The losses become intimate now. Privacy, balance, and the ability to be alone are fading.

And yet, in the middle of painful humiliation and dependency, moments of strange grace continue to appear, in laughter, music, memory, love, even in the raucous anger of an Eminem concert and a midnight hot tub conversation beneath the stars.

Ilene starts asking a different question: how do I remain myself despite the disease.

Ilene

I leaned forward in the wheelchair, opened the front door, rolled out onto the postage-stamp porch and positioned the wheelchair at the top of the ramp.

“You can close it now,” I called over my shoulder to Margarita. “I’ll meet you at the bottom after you open the garage door.”

A small surge of adrenaline jabbed my chest as the wheelchair’s front wheels dropped to the ramp when I eased the joystick forward and began my descent.

Still, the fresh air flowing past my face lifted my curls as I zipped down the ramp, across the pavers and down the next ramp to the driveway. I twirled the chair in a freeing rush of independence and relished beating Margarita down to the garage.

Now that I’d finished Lynn’s drawer, I wanted to make one for Mom. Even so, like the puffy clouds in the day’s sunny sky, random thoughts about my relationship to ALS blossomed and floated through the back of my mind as I sifted through a chest of memorabilia for things to use. How could I fight back now? The BNG had been my last hope. What can I do go give meaning to fighting … what? What can I fight for instead of against? What can provide meaning for fighting this disease, for my life?

The afternoon slipped by. The clouds outside gathered, darkened, flashed lightning and thundered before cleansing the forest with rain. My inner clouds thundered too and struck through my being. Nothing could cleanse my failing body. Nothing. What was left?

“If I am a spiritual being on a human journey, is death such a bad thing?”

“What soul learning can I find in the nature of this disease?”

I rummaged albums for images of Mom and found many of my father too. A brilliant chemical engineer and mathematician, he‘d died from a virulent cancer in the left hemisphere of his brain, never really accepting loss of his analytical abilities. Yet the disease forced him to experience his emotional side in the waning months of his life. Was that his lesson?

“Like father, like daughter,” I muttered. I loved my physicality as much as Bernie loved his intellect. How could I balance the call from the other side against that?

More questions roiled thunderclouds in my mind. How do I let go? Is surrender the same as giving up? Can I help those dear to me let go? What will become of my husband? This is so unfair. Why now? Why can’t we grow old together? Why? Why? Why?

Tears streamed down my face as I continued to search for pictures of Mom that might fit the project. So many questions.

I found a photograph I’d made of her at a biker rally in Fairplay shortly after Nick and I moved to Colorado. Milly had loved the gleaming motorcycles, biker outfits, tattoos and characters at the event.

Using Photoshop, I’d pushed the image to garish colors, giving Mom’s skin a lime green and blue cast. Her baseball cap, worn backwards, hip-hop style, perfectly fit her eccentric, quirky personality. A personality I often clashed with in my teens and early twenties. Mom had liked the image so much she had used the photo as part of her artist’s statement in one of her shows, and again, tears seeped from my eyes. Would I ever have a show of my work?

I placed the photograph in the center of the drawer. Despite our differences, she had been central to my life. And the drawer was about her, not me.

I dried my tears. Life has been good. The real question is: How do I end it well? What is a good ending? What do I do now? No, how can I “be” between now and the end to make life good? Maybe that is the fight. Being me to the end and not giving in to despair.

Bane

The husband and cousin play gin rummy with the woman. They blow off steam and hurl epithets at each other over losing hands. Halfway through one game she makes a bathroom “run” on her own—as usual.

She rolls up to the doorway to the toilet closet. Lurching out of the wheelchair, she quickly latches onto each side of the doorway. When she reaches for the safety bar, her right leg buckles and she falls. Her right knee smashes onto the floor, sending a jolt of pain through her body.

The husband and cousin hear her fall and rush to her aid. She didn’t even have a chance to cry out before they appear. She lies on the floor, clutching her right knee to her chest, sobbing with pain and needing to pee.

The husband lifts her and puts her back into the wheelchair.

“Put me on the toilet!” she yells between sobs.

“Margarita!” he yelps as he lifts her to a standing position and turns so she can sit on the toilet. All three of them squeeze into the tiny toilet closet.

The cousin reacts instinctively, unzipping the woman’s jeans, pulling them and her panties down in one quick motion. The husband sets her on the toilet just in time.

Hunched over in pain and embarrassment, the woman sobs while holding her knee.

The caregivers wait, expectant … and helpless.

When she finishes, she lifts her head and sees them, blurred and magnified by tear-filled eyes. My grip on her tightens, squeezing independence from her body. The husband stands to one side, holding her against his waist until the sobbing passes, while the cousin brings tissues.

“I can’t stand this,” she gasps between ragged, snotty breaths.

“I know babe, I know.”

The cousin stands in front of the woman, her feet planted in a determined position, her face even more insistent, she glares at the husband. “We need to switch bathrooms now.”

“I agree,” he says.

Shamed by the experience, she keeps her head bowed. Blowing her nose, she glares at useless toes protruding past her jeans. The woman nods her head in agreement and curses at another loss. She can’t get used to it. She will never get used to it.

None do.

Ilene

The next evening Nick drove me and Margarita to Denver’s Pepsi Center for an Eminem concert. I must have been the oldest fan at the concert, and I loved every minute of his angry lyrics as they resonated inside me. Nick waited for us at a nearby sports bar.

In a burst of pot-induced energy, when we got home at 12:15, I insisted on getting into the hot tub. Nick transferred me from the wheelchair to the chaise lounge the way we’d been doing it for the past few months. He would position my feet in the water and stand behind me. I would push my hands against the chair to lift and swing my butt to the edge of the tub. This time my arms couldn’t push my butt off the lounge. I twisted and looked up at him, as the pain and frustration of this new loss seared my mind like a branding iron.

He saw my helplessness, my anguish. Without a word, and with a warm, enveloping compassion, he reached under my arms and swung my body to the tub’s edge.

“Do you want me to lower you in?” he whispered. I loved him for asking that so softly.

“No, I’ve got it now.”

∞

Once in the hot water, the force of the jets adds to Ilene’s feeling of weightlessness. She sits in the recliner nook, gazing at the galaxy, bright in the moonless night. “I think we’ve been together before in some past lives, maybe even on some other planet” she says.

“What makes you say that?” Nick asks.

The bubbles massage her naked body. “I don’t know. It’s just that the three of us mesh so well. There is a closeness that feels older, longer than the time we’ve actually been together.”

“Makes sense to me,” Margarita offers. “I’ve never felt this close to anyone in my life. I’ve never felt this comfortable, this accepted by anyone else either.”

The anger Ilene released at the concert no longer roils her gut. Her mind roams through the Milky Way, wild. “Maybe between lives we agreed to be with each other this way. I’m sure we had different kinds of relationships with each other. Any one of us could have been male or female, brother or sister, parent or child, lovers or, who knows, even a master-slave relationship.”

Margarita says, “It’s hard for me to think of you two,” she says, “and me—in a different relationship with each other, but, somehow, it feels right.”

“I know,” Nick says in his halting manner, “It used to be that way for me too. Less so for prior lives because I didn’t think they make any difference in the present life anyway. The idea of making agreements or contracts between lives though, … well … didn’t ... set …”

Ilene senses what he is about to say and jumps in, “But it doesn’t negate free will. Your ego might take over and break the agreement.”

Margarita shifts to the corner seat and a different set of jets. “What happens then?”

“Most likely you try again in another lifetime. Both souls are still likely to want that experience,” Ilene says.

“So what do you think our agreement was … or is?” Nick asks.

Buoyed by the water, Ilene pushes herself out of the reclining seat and slides into the seat next to him. She pulls her legs up and lets them float across his legs. Margarita, sitting in the corner seat, catches her ankles and rests them on her thighs.

“I think we each had things we needed to do on our own before we reconnected. Like how we bounced apart and together again so many times before we got married,” Ilene says then nods toward Margarita. “Like when you left our house in San Diego just before we were about to tell you that you were adopted. Now I am a mentor for you … maybe in exchange for you helping me with the effects of ALS. And,” Ilene squeezes Nick’s thigh to get his attention, “Nick, you get her help with me in exchange for the stability and security you provide at a time when her whole identity is thrown into question by learning she was adopted.”

“And I’ve learned to love more deeply, freely and unconditionally with you,” he adds.

Tears come to Ilene’s eyes, obscuring her vision of the pines and stars above. Her heart swells as she embraces her gratitude for these two souls who accompany her through this stage of her life. For the moment, despite her body’s betrayal, she is at peace with her world.

Bane

I am at war with the woman. She is her body, nothing more. All of her meditation and mind-talk has no effect on me. Not now. Not ever.

Nick

I missed having Tasha around the house. It felt empty without a dog to accompany us on the “walks” Ilene insisted on to get out in nature. I thought a puppy would be an added distraction for Ilene to focus on. I found a breeder and picked out another white German shepherd puppy and brought him home.

I named him Shilo, after the Neil Diamond song.

Ilene

My growing dependency shades my self-worth. I am my body … and something more. I enjoy—enjoyed—its flexibility, lithe movements without thought, striding through life with ease and grace. All those lovely, haunting memories, blown away like clouds forming and dissolving.

Did I appreciate being embodied enough?

I joke to cover my embarrassment at being carried, and about Nick and Margarita’s growing protectiveness. The jokes hide my resentments. My caregivers are the only ones I can be completely real with—so far. They help me keep my spirits up in different ways. Margarita plays with me. Nick provides the solid foundation for the play. And Shilo always wants to play.

She shifts her focus away from stopping what is happening to her body. She starts learning how to live with the disease … and how to let go of the losses.

The losses are about external forces and capabilities, and she begins to shift her focus inward.

Bane

“My legs, back, and shoulders keep getting weaker. Even my arms feel weaker. I hate seeing my belly turn to flabby fat,” the woman confesses to her journal. “I don’t know this body. I don’t want this body anymore.”

I’ve dissolved her taut, muscled legs into flaccid appendages. Nearly unresponsive, those muscles float, thick ineffectual cords clinging to bones beneath her skin. She cannot escape the uncertainty of her certain nightmare.

Her hot flashes are more intense and more frequent.

Still, she continues the BNG protocol in the absurd, blind hope it blunts my attack.

For the past five months she has compensated for her increased leg weakness by using her arms to pull herself up and ease herself down. Now I send the arm muscles into sporadic spasms. They telegraph new fears of my advancing desecration. Each time she pushes herself from the wheelchair, she assesses her strength and balance. By the end of the day, her arms and shoulders are nearly exhausted. She fears their descent into uselessness. Her future is short, bleak. There is nothing she can do to prevent my continuing invasion.

Ilene

I grew disconnected from my body. I was losing my body to ALS and I couldn’t seem to do anything about it. But I was not my body. As much as I loved my body—well, used to love it—I would not let it or this disease define me. That would be giving up. I would still fight it, yet somehow, in those moments of calm during my meditations, something reminded me that I didn’t have to lose me. Although I loved being in and tending to my body too much to think about dying, I always saw it as intertwined with yet separate from the real me. The questions now were: If I have to, how do I let go of this love of my body? How do I let go of friends, family and Nick? And last, how do I embrace the unknown?

As soon as Nick learned there were handicapped-accessible rental RVs, planning our road trip became my top priority. It took my mind off the disease. I intended the road trip to be a celebration with friends and family. Maybe like a mobile wake, certainly not a funeral. I laughed when I told Nick and Margarita, “It will be my own personal farewell tour.” I had to laugh. I’m not going to give myself up to the disease even if I was losing my body to it.

Nick located a rental RV and we went to Denver to check it out. The lift gate overcame our main concern: getting the wheelchair and scooter on and off the RV. Although the living space was cramped, we decided we could make it work and made the reservation. I felt overjoyed at the prospect of visiting friends and family one last time. I had something to look forward to.

***

A few days before we were to leave, I’d rolled out onto the front door stoop. I peered down the first of two skinny sixteen-foot ramps of plywood and steel Nick and Margarita built to span the two flights of steps to the driveway below. In only three days, they had removed the rough rock pathway between the steps, installed a twenty-foot walkway of concrete pavers in place of the rocks, and built the ramps.

“It looks awfully narrow. Are you sure it’s wide enough? It’s steep too.” The tremor I felt in my voice betrayed my anxiety.

Nick grinned at me. “You’ve got three inches of room on either side of the wheels. It should be enough for an expert wheelchair racer like you,” he said.

I edged closer to the ramp. My throat tightened and my body stiffened as I watched the front wheels dangle a few inches above the ramp. It felt like a couple of feet.

“It’s OK,” he said, “The center drive wheels are stable, ease forward. Just don’t go too fast.”

I eased the joystick—why do they call it that?—forward, creeping farther out, and was rewarded with a drop that drove the knot in my stomach to my throat. With fingernails biting into the left armrest, I let out a whoop.

“It’s like starting a roller coaster ride!”

I zipped down to the new walkway.

“Easy, girl,” Nick cautioned. “Those guide rails are only two inches high. You could jump them if you’re not careful.”

I was already past him and ready to start down the second ramp. For the first time I had the wheelchair outside in the mountain air. I spun around the driveway, loving the breeze fluffing my curls and cooling my face, heated by another BNG-intensified hot flash. “I can go out for walks on the dirt road with this now,” I announced as I relished this new freedom.

Nick’s grin at my cavorting around the driveway disappeared. “I suppose so, and we will have to check the tires before you go back into the house to see if they picked up any rocks.”

I sighed, spun the wheelchair and dashed toward the edge of the driveway. I gazed down our hillside—the hillside I could never walk on again—and out over the trees toward Windy Peak. I brushed tears away before they could fall. Even the tiniest bit of regained freedom cost something. Not for me, but for Nick and Margarita. They are the ones who must do for me what I cannot do for myself. They must pick up the burdens ALS has imposed, compensate for my useless legs. It is so fucking unfair. To everyone. Let it go.

I buried the regret and headed toward to the ramp. “Let’s go back up.”

I centered the front wheels on the bottom ramp and started up slowly. Then the wheelchair started scratching the asphalt and refused to move. I leaned sideways and saw the drive wheels suspended between the front and rear wheels. Nick groaned. “The ramp’s too steep.”

He pushed me a bit and the drive wheels caught the ramp and I shot up several feet before stopping. It must have alarmed him because he held on to the handles as I made my up the rest of the ramp. I eased up and the ramp disappeared from my sight just before the front wheels fall to the platform. Now I knew what to do. I sped up a bit as I approached the top ramp. My momentum carried the drive wheels into contact with the plywood and I spurted up. I immediately slowed down for the rest of the way up to the door stoop.

“Thanks, honey,” I told Nick after we gathered in the house. “It was a little scary at first, but I can do it.

The pained expression on his face revealed his disappointment. “I should have made the ramps twenty feet long. It would have been easier for you.”

I let go of my regret, “The walkway is beautiful and the ramps will be OK. It’s not as if I’m going anywhere without one of you.” I knew he was fighting for my independence too.

I could take the wheelchair on our road trip … and down to the art room.

Ilene

The road trip almost didn’t happen. Fifteen minutes from home a huge bull elk stepped out from the shadows toward the road. Nick swerved the RV in time to avoid it. Although Margarita and I were rattled for a while, we settled down for the drive to Nick’s sister in Portland.

The RV ate away the miles between Denver and Portland. I gazed out at unfamiliar scenery—and knew I would never see it again. Sometimes I felt a quiet joy as I took in the blessing of seeing new towns and terrain. I viewed the land from a last-look perspective. An appreciative yet letting-go perspective. It paralleled my meditations—mostly.

As I embraced the passing pines, plains, canyons and farms, I remembered another time—long before I knew about the disease—a time when everything was as it should be. Not long after we moved to Colorado, Nick and I had taken our ailing, enfeebled cat to the veterinarian to be put to sleep. Throughout the drive, I had held him in my lap, and he raised himself up to see the passing scenery. “It is like he knows this is his last trip,” I had told Nick.

I shuddered, then let the memory fade away. This is my last vacation and I will not make it sad. I will make it a celebration.

∞

Flutters rise in Ilene’s stomach as Nick backs the RV into his sister’s driveway. She has not seen her sister-in-law since the diagnosis. She studies DeAnn and her husband Mark standing in the long driveway. A tall, athletic, woman with straight, shoulder-length blond hair framing a lightly tanned, smiling face, DeAnn earned supermom status in Ilene’s eyes by raising three big rambunctious boys, mostly by herself until she met Mark.

The lift gate lowers Ilene and her scooter off the RV and she rolls up to the steps of the back deck. “I’ll get you,” Mark says as he bounds down the steps. With his Lincolnesque stature and strength derived from decades of construction work, he easily swoops Ilene out of her scooter and carries her to a chair on the deck. The smell of barbequing steaks and chicken fills the air. Nick and Margarita follow, lugging the scooter up to the deck so Ilene can be mobile in the house.

The next morning, Margarita showers with Ilene. Ilene clutches the shower stool’s handholds and locks her arms to sit up straight while Margarita bathes her. Fear of falling forward prods her to tell Margarita, “Don’t scrub my back too hard.”

For three days they talk, laugh, play board games and visit the Oregon coast. No one talks about the disease.

Leaving Portland, they stop at a state park along the coast for their first break between visits. Nick props Ilene’s feet atop pillows to help the blood flow back to her heart. Like her ineffectual leg muscles, her blood circulation requires assistance.

He fluffs the pillows and moves her legs about, trying for a position where she can sleep comfortably. They can’t find one. Her new reality dawns on her. Maybe there is no comfortable position anymore. “This or better,” the hopeful mantra of a few months back, haunts her. She needs something about letting go of expectations—especially expectations that can’t be fulfilled in this lifetime—and appreciating what is in the present.

“There, that’s close enough,” she says at last. This or close enough. My new mantra.

Nick’s glance holds a question. She blinks her eyes quickly before tears can form in response to his sorrowful look. A wan smile crosses her face to signal, It’s OK. It’s not perfect. It will do. She knows she has plenty more to learn about letting go. Move on.

The trio next visits Sally, a friend from Ilene’s leadership group. When Sally takes Ilene to see the co-op art gallery she and her partner recently started, Ilene whispers to Nick, “You know, I still want my own show.”

“Smiling broadly, he says, “I can make it happen. Let me know when you want to do it.”

Bane

The woman claims she wants to learn to let go of life. But I want her to cling to hope, to life, and feel the full force of the despair I command. She will not escape the harshness of my assault. I am no teacher. I am the reaper, the destroyer.

Unlike her European and Hawaii trips the year before, the woman cannot put me on a shelf in a back corner of her mind. I linger just beyond the light she calls forth from within. She defies me, ignores my darkening shadow and casts her bright light outward upon those around her. Still, she feels my presence, waiting, just beyond her glow. My shroud shades each meeting. She knows each encounter with a friend is her last.

Ilene

I accepted my deterioration a bit more easily. Somehow. Sometimes. Maybe it was my meditations or my openness or curiosity. Maybe it was my stubborn refusal to give in to the despair and darkness of this disease. What am I learning about life, my life, and those around me? Can I find happiness in dying and share it with those I love? Maybe my spirit guides are helping.

Not against the disease alone, but against dependence, exhaustion, and the slow erosion of capability. Every movement must be planned. Each step fought for. Small victories come at a cost.

And still, she refuses to give in.

Ilene

I’d reached a point of quiet non-thinking, when a pine bough outside our bedroom shed its load of snow. The plop broke my morning meditation. I started over. How do I fight this now? How do I endure this now? How long must I endure this? Can I accept this? How, how, how. Let it go. How? Move on. How? Celebrate the moment. How? How do I get through each day? Where are my spirit guides? The temporary silences in my mind yielded no answers. Calm came and I felt something … just beyond, and it disappeared more quickly than my questions. I needed answers I could act on, not the temporary soothing moments of nothingness from the silent void. And yet, I felt, more than heard, that presence–their presence?–coming through …

We are here dear one. Let go of your quest for answers. Find reassurance in the path you have chosen and our support for your journey. Be open to our presence without expectation.

Frustrated with my search, I gave up, stretched my arms and twisted my torso side to side as I lay in bed. I couldn’t stretch my legs. I took a deep breath and clenched my teeth. As if I were working out, I inhaled deeply through my nose and exhaled through my mouth as I pushed myself into a seated position to begin my morning fight routine.

Round One. I tugged my pajama bottoms to maneuver the dead weight of my legs over the edge of the bed. I leaned forward, judged where my feet landed. I pushed my legs with my hands to make sure the feet I no longer ruled lay flat on the floor. I made sure my ankles wouldn’t roll to one side or the other and shifted my feet far enough apart that I wouldn’t lose my balance when I pulled myself up. I didn’t want to collapse into a helpless heap, possibly hurting myself on the wheelchair or nightstand. If I had to call Nick or Margarita for help, it would be another admission of my impotence. I would not give in to it. I needed to focus on making the transition to my wheelchair. Nothing else mattered in that moment.

Round Two. I bent toward the wheelchair, reached out and clutched the armrests with a death grip. Grinning inwardly at the irony of my hold on the wheelchair, I pulled myself forward and willed my weakened calves and thighs to lock my knees beneath me as I wrenched myself up. I leaned on the wheelchair’s armrests and paused to prepare for the next move. I wasn’t vertical, but at least my legs were. Next, the tricky maneuver. I pirouetted awkwardly around my immoveable feet and useless ankles and flopped onto the wheelchair’s cushion. I expelled the breath I had held with an audible huff. After untangling my feet, I lowered the wheelchair’s footplate, removed the power cord charging the chair’s batteries and, using both hands, pulled each knee up to let my bare feet fall onto the cold steel footplate.

Round Three. I rolled into the bathroom to face my next hurdle: getting to the toilet on my own. I shoved my feet off the footplate, lifted it up and repositioned my feet flat on the floor. Focus! Nothing else matters! Stay independent—as long as I can. I pitched myself upright, braced myself against the narrow walls and staggered to the safety bars on either side of the toilet, pirouetted around my feet again and used my arms to lower myself to the elevated seat.

Bane

Setting herself on the toilet maintains the woman’s dignity. It’s a fleeting, moment of self-delusion. Yet the tiny reward buoys her—a temporary triumph, like life itself, in the face of inevitable death. She knows I will win. What does she gain by her puny stubbornness? Pride? Self-respect? Independence? Fighting the good fight? No, she tells herself, she wants to discover some lesson she is supposed to learn from me. What is that lesson? TBD, she says to herself with a lopsided grin, laughing in my face. Foolishness! Arrogance!

Ilene

Each time I wiped myself I remembered telling Nick last year that I would kill myself before I allowed him to do that. It’s more intimate than sex. I pushed myself out of the seat, braced against the walls and thrust each hip forward to thrash a leg toward my wheelchair.

Part of me wanted to scream at the injustice and indignity of my condition. I let it go. Inner calm returned. I dropped into the wheelchair and congratulated myself.

Round Four. Since I couldn’t stand in front of the vanity mirror, I pushed myself out of the wheelchair again and sat on the towel covering the side of the tile-enclosed bathtub to brush my teeth and remove my pajamas so I could shower.

By now, only my upper body, arms and hands defended my mobility and freedom. They steadied me so I could flip my feet alongside the shower enclosure and open the doorway. I clutched the side of the shower enclosure with one hand while using the other hand to lift each leg—its foot dangling like a limp washcloth—over the four-inch lip to the shower. Using the faucet handle for balance and support, I slowed my descent to the shower chair.

Nick had already lowered the adjustable showerhead and hose so I could easily reach them after I sat down.

Round Five. The cold chair sent a shiver up my spine. I couldn’t risk turning on the shower to heat the chair before I got in. I turned the showerhead away from me, twisted the faucet on and waited for the water to warm. Even washing myself required concentration to stay balanced and not slip from the chair. Throughout the shower I remained vigilant, yet tried to recreate the luxury of relaxing in a hot shower.

Round Six. The hot shower felt good, despite sapping my strength. I gritted my teeth for the scary part, getting out. I had fallen once. I trained the stream of water on the shower pan to flush all the soap away. I turned the faucet off and waited for the water to disappear. Carefully, I planted my feet solid on the shower pan and grabbed the faucet handle to pull myself to a standing position. I strained, concentrating my focus and muscles to lift my legs and limp feet over the lip of the shower, and took three baby steps back to the tiled tub enclosure.

I propped myself up against the enclosure, half sitting, half standing. My basket of beauty products sat at the end of the long vanity. I combed the tangles out of my curls. I rarely used makeup other than around my eyes and some neutral gloss on my lips. I liked my natural look—a lot. That’s why I always kept my body in good condition … until now. Let it go.

I inserted my contact lenses and turned sideways to look in the mirror. An exhausted face stared back at me. How long can I keep this up? How long do I even want to keep this up? I leaned on the vanity and fought back useless tears and a stomach as empty as this new life.

Round Seven. I rolled back to the bedroom. Margarita had picked out underwear and a pink jeans and shirt outfit and laid it out on the bed, saving me the trouble of reaching for coat hangers. I dreaded tugging the heavy Spandex support hose up my legs. I couldn’t stiffen my feet, so they flopped around like a landed fish as I fought to pull the material past my heel. It took all my strength to tug the hose up my thigh. I reminded myself of the payoff: they helped my blood flow against gravity back to my heart, a pumping task my flabby legs once performed with ease.

Still seated, I pulled my panties up to mid-thigh, then my jeans to the same level. Once again, I raised the footplate and pushed myself upright. With one hand braced on the armrest, I used the other to pull my panties and pants up to my waist before falling back into the chair to zip and button the fly. With relative ease, I put on my bra and shirt. After leaning forward to let the shirt slide around my back, I found it a bit harder to sit erect. Might I reach a point where I couldn’t push myself back into the wheelchair if I leaned forward? I squashed the dread rising from my belly. Don’t think about the future. Don’t cry. Stay in this moment.

Round Eight. “I’m ready for my boots,” I shouted. Margarita bounced in, showered and ready to go, her blond hair dripping water on her shirt. If I concentrated, I could put my sneakers or flats on, but not the heavy boots. I wanted to keep my legs warm when we got to the hospital. I’d found that as my heel traveled farther inside the bootleg, the boot bent my toes down. Sometimes they painfully curled underneath my foot or squished together. Margarita had become an expert at putting them on just right. The satisfying “thunk” of my heel hitting the insole without my toes being cramped signaled the end of another morning bout.

Margarita zipped the boots and I rolled out to the aroma of the omelets, bacon, coffee and tea Nick had prepared for breakfast. I had won the fight this morning. At what cost? Do I have enough energy left to eat?

Nick

“Can I go to bed now?” Ilene joked as I set breakfast on the table.

I chuckled, knowing her humor masked the strain she put herself through most mornings.

“No, really,” she insisted, “I’m already tired. Just thinking about what I went through to get ready to go to the appointment with Dr. Ringle makes me tired.”

I stopped smiling. I heard something deeper. I felt my eyebrows pinch together.

“I understand,” I said slowly, “But we do have this appointment.”

“I know.” she said. “I just wish it was later in the day. It takes me so long to get ready that I’m exhausted before I start.”

“And you’re not getting a good night’s sleep either.”

She stared past me out at Windy Peak. “No, I’m not.” For one of the few times in our relationship, I heard resignation, maybe even regret or remorse, in her voice.

Ilene

Once, I remembered: Once I moved all over the bed, snuggled next to Nick, only separating when he became too hot. I took that simple freedom of movement for granted back then.

Now, in the middle of the night, discomfort or actual pain woke me up. When I turned over, my hips rotated—reluctantly—with my body, but my flaccid legs twisted around each other like a limp pretzel. My feet tangled in the sheet. I had to wear pajamas now. The only way I could move my legs was to grab the pajamas just above the knees. I missed the skin-to-skin contact with Nick. Static electricity sparked under the covers and stuck the cotton sheets to my feet and pajamas as if they’d just come out of a clothes dryer. It took at least five frustrating minutes of pushing and pulling before I could find a halfway comfortable position so I could drop off to sleep again—for an hour, maybe two—until my body and subconscious mind rebelled against the inertia and demanded movement.

Nick shifted into problem-solving mode. “Let’s ask Dr. Ringle for a prescription for sleeping pills when we see him this morning.”

Asking for sleeping pills hadn’t crossed my mind. Maybe it wouldn’t be such a bad idea. In the back of my mind another thought, darker, emerged. I better do this now. Get as many as I can. They may be useful—later.

“OK,” I replied. “We may as well see if sleeping pills can help.”

The thought of dying no longer terrified me. Even what was happening to me didn’t terrify me. I’d adapted pretty damn well. I still fought it, of course, although I was becoming curious about how I might handle the losses. Only two things terrified me: complete incapacitation and the inability to communicate. Contemplating my own death was less sad than the inability to see friends and family who had been unable to travel to Colorado.

“There are so many people I’d like to see and I can’t travel,” I complained.

∞

“Why not?” Margarita asks.

“I can’t take my electric wheelchair on airplanes. I’d be dependent on you two to push me around everywhere. I’d be miserable.”

“What if we took the scooter? It breaks apart and we could have it as part of our luggage,” Nick says.

Ilene pauses, reluctant to reveal how much her abdominal muscles have weakened.

Windy Peak, still covered with snow in the distance, draws her attention … and silence … as she debates how much of her weakness to reveal. What the fuck.

She stares at her hands and shakes her head. “I can’t use the scooter very long anymore. I need the support the wheelchair gives my back and torso when I get tired. The scooter doesn’t do that. My arms get tired from reaching out in front. It’s getting too easy for me to fall forward.”

Nick gazes into the distance, then back at her, his face knotted and puzzled. “But you’ve been using the scooter just fine around here and on our trips to Denver. I don’t understand.”

“That’s because it’s only for a short while. The rest of the time I’m in the wheelchair. I can’t go a whole day in the scooter.”

“That eliminates air travel,” he says bluntly.

“What about an RV?” Margarita asks.

“How could we get the wheelchair up the steps of an RV?” Ilene asks. “Besides, it is too big to fit through an RV’s door.”

“Maybe not,” Nick says. “Some RVs have tailgates for motorcycles and ATVs. Maybe we could rent one.”

“Whoo hoo,” Margarita hoots. “Road trip! I love road trips.”

Ilene looks up to respond with excitement about the possibility. Her face turns bright pink and beads of sweat pop out on her forehead. Her hot flashes now surge with greater intensity and frequency since she stopped hormone replacement therapy and started the BNG treatment.

“It’s just the BNG burning up the ALS,” Ilene says, with a game grin and a sparkle of hope in her eyes. She pulls the hand-held electric fan from the wheelchair’s pocket, turns it on and directs the breeze over her face and chest and waits for the episode to pass. If the BNG isn’t working for the hot flashes, she wonders, how could it delay the onslaught of the disease?

Margarita cheers, “Go BNG! Go BNG, burn it outta there, BNG!”

Ilene’s grin slides into a wan smile. “It’s another ‘healing flash’,” she says, hoping to recast the ferocious flare-up in a positive light.

Nick forces enthusiasm into his voice, “Right.” He’s not at all convinced.

The beads of sweat evaporate and Ilene feels her face return to normal.

“I’ll start calling tomorrow,” Nick says. And check online too.”

Ilene’s eyes sparkle. She envisions visiting with everyone she wants to see. And if the BNG is working…maybe, just maybe, there’s some hope for her after all. And if there isn’t, she consoles herself, at least she will have one last vacation—a farewell vacation.

Bane

The woman introduces the cousin to the neurologist, then he starts the familiar regimen of muscle testing and questions. The woman’s voice drops low and slow. The banter of prior visits diminishes. Reporting the functional losses I have inflicted on her body since her last visit dismays her. He gives her a prescription for Trazodone to help her sleep. It is all he can do to ease her symptoms. In his helplessness he can only mitigate the edges of her trauma.

She tries the drug. For the first time in months, she sleeps through the entire night. When she wakes up and moves, pain jolts through her. She feels like she had worked out all night long. Sleeping in one position all night makes her body ache. Worse, she feels like she’s in a fog until early afternoon. She tries the pills again. Twice. Then she puts them away.

She rolls to her office. Her body relaxes and slumps slightly forward. She stiffens. Can’t let that happen, she says to herself, swearing that she will not let herself become a worm.

That a worm moves does not occur to her.

She promises not to wait too long. Not to lose the ability to end her life on her own terms.

Such pledges and oaths do not concern me. I trust the instinctive human desire for survival to make my victory complete. I shall render her entirely immobile before letting Death claim her.

In this chapter, effort and hope collide with evidence. Letting go begins to take a different shape.

Bane

The teapot’s whistle shrieks. The woman strains as she pushes out of the wheelchair to stand at the stove and turn off the burner. She had filled the teapot one quarter full. Only then could she handle its weight. She pours steaming water into a mug. Unwrapping the BNG, she dips the lozenge in the hot water until it slides off. Falling back into her wheelchair, she waits for the tar-like BNG to dissolve. She licks the gooey residue from the plastic wrap. She savors the taste despite the oyster-like texture. The body always likes what it needs, she reminds herself. She hopes for the best. I know better. I deliver no best, only worse.

She screws the cap on the mug and rolls into her office to record her response to the treatment as she had been directed. For three weeks she’s dutifully consumed BNG and recorded changes in her body. The ritual fuels her unfounded hope. The distant neurologist had said it could take three to five months to see any results. I sense no effect. Nor do I expect to. Nothing touches me. The woman remains patient. She is not surprised at recording her disasters as I continue my climb up her legs. My forays into her upper body are increasingly successful.

“Last night thighs twitched horribly,” she writes. “Worse, is weakness in belly muscles. Scary. Too much sitting in wheelchair. But can’t do much about that. It’s still too early to tell.”

Leaning back in the wheelchair, she studies her impossible attempt at objectivity.

She cannot sense any abatement in my attack—there is none. Nor will there be.

The twitches signal my march through her thighs. Soon, her arms will come under my siege.

Her notes are the only way she has to evaluate the effectiveness of the BNG. Beside each new or increased loss of function she draws a teardrop marking the defeat. The ink makes permanent the tears that fall to the paper, raise welts and disappear. Each time she draws a teardrop, a little more air from her balloon marked hope escapes. The teardrops she draws strike her as descending balloons, not rising ones. She asks herself why she can’t have even one full, rising balloon. She thinks that if she could compare herself to someone who is not taking BNG, or some other “standard” rate of decay, she might re-inflate her balloon.

I am too opaque for scientists. My attacks are too varied, almost unique to each patient, despite the obvious similarities. No treatment blocks my march toward victory.

Ilene

I loved the electric wheelchair and scooter as I zipped from place to place quickly and efficiently. I felt a renewed sense of mobility. I tried to ignore the cause and the cost: acknowledging that my legs were atrophying into useless appendages. It took my undivided attention and concentration to stand and move just a half-dozen steps. If only I could find some way to activate my muscles and maintain my strength while the BNG worked its magic.

An artist friend suggested I contact her physical therapist.

Nick and I both had doubts, but what the hell. I’m trying a Chinese herbal treatment with no scientific proof supporting it and a Western medicine with minimal documented efficacy. Why not physical therapy? What do I have to lose? A few days? A few weeks? Certainly not years.

Nick reminded me of Dr. Ringle’s caution against stressing the muscles, but the inactivity was driving me crazy. I called the therapist and he came out to the house to assess my condition. He had little knowledge of ALS and said he would do some research and see what he could do to help. After a couple of days he invited us to his office to talk over his results and suggestions.

We decided on a regimen of 12 stretching exercises three times a day. By the third day I felt drained abut delighted to be doing something physical. I also felt random twitches in my lower abdomen and hips—so like the tremors that struck my feet and calves the year before.

I kept at the workouts. The tics in my legs subsided as Dr. Ringle had explained––or I might say predicted––they would as my motor neuron cells succumbed to the disease. I didn’t tell Nick or Margarita about the twitches until just before our next visit to the therapist. I ended my report with: “Maybe they will go away as the BNG takes hold.”

Nick’s forehead wrinkled and one eyebrow arched, but it was Margarita who softly questioned my assertion. I tried to sound optimistic, I had to. “We’ll just have to wait and see.”

The therapist attributed my exhaustion and tics to the newness of the exercises. It stoked my competitive nature. I continued the exercises for a week but needed a nap after each session. Worse, the twitching in my hip and abdomen increased, triggering emotions ranging from annoyance to fear, especially when I tried to relax or sleep at night. Then they intruded on my morning meditations. It was too much for me to control. When I told Nick I couldn’t do it anymore because I didn’t have any energy left over for my coaching, artwork, or anything else, he said I should quit. Tears flooded my eyes and I slapped the arm of the wheelchair.

“It feels like I’m giving up. You know I don’t do that.”

“Don’t be so hard on yourself,” Nick said. He moved behind the wheelchair to massage my shoulders. “You gave it a try. It didn’t work. We move on. Together.”

At least I gave it a shot. Now I had to let it go. Move on. Just like in my meditations, acknowledge the thought, then let it go. Let something new come in—from … somewhere else. Why did I create this path?

Bane

For the past few weeks only the woman’s willpower, not her leg muscles, have kept her standing in the shower. Today is no exception. She uses one hand to lift her weaker right leg over the lip and through the shower doorway. She waits for it to lock in place before shifting her weight and hiking her left leg into the shower. As she leaves the shower, she starts to repeat the process. Just as she lifts her right leg, her left leg buckles. She collapses and falls on her hip.

The hurt coursing through her body inflames her injured pride. She refuses to call out for the husband or cousin. Instead she grabs a faucet and pulls herself upright even as tears of loss and anger fill her eyes. Minimizing the real reason for the fall, she tells herself that she just took too long in the shower. She asks the husband to buy her a shower stool.

Nick

I sat down at the table to play cards with Ilene and Margarita. I noticed Ilene take a deep sigh and look down at her hands. I knew the gesture. She was about to announce something she had been pondering. She’d decided to sell the Mazda. When she said she would never drive it again I knew what it meant. It had been symbolic of her body and spirit. Her joy was driving it, not riding in it. Her decision was an early signal, maybe an unconscious one, that she was starting to let go of her attachment to her body. My heart ached at the realization.

I researched fair pricing for the car while Ilene sent out an email announcing the availability of the car. Two coaching friends responded, and the sale and transfer would take place at a dinner with her coaching community.

Ilene

I navigated on the scooter between the chairs of the crowded dining room but couldn’t maneuver it close enough to the table. Margarita and Nick lifted and slid me onto a chair close to the table. It felt like being carried on a litter. “I feel like a queen,” I joked lightheartedly, hoping my face hadn’t turned red.

“You are a queen,” Margarita said.

I went with both of my coaching friends for test drives. I was saying goodbye, and I wanted to savor its power and handling characteristics one last time. I wouldn’t cry. I just celebrated this moment, what I had. It’s in the past. Let it go. Move on.

On the drive home, I let some tears fall at the loss of my Mazda, my symbol of independence and freedom. Then, from somewhere else, words arose in my consciousness.

You are learning to let go, dear one.
No attachments; that is true freedom and independence.

It still hurt. Everything that was happening to me hurt. Only my meditations, art, writing and jokes gave me fleeting relief. Could I learn to let go of the pain?

Hope.

Even as her world narrows, she reaches for relief, for meaning, for something that might still turn or slow this down.

∞

“It’s here,” Nick says, sliding past the chairlift to reach the main floor.

“Great. Let’s see it,” Ilene says, wriggling with anticipation in her wheelchair.

He opens the FedEx box and her first two-month supply of BNG tumbles out. The distributors call them lozenges. She holds one in its neat, intricately folded plastic wrapper as if she is about to open a beautiful gift. Possibly a gift of longer life. At least she hopes it will be.

Ilene carefully unfolds the plastic and peels it away from a gooey paste the size of a teaspoon. It looks and feels like a patch of sticky tar. According to the directions, the goop can be eaten directly or made into a tea twice a day, one half hour after breakfast and dinner. It adheres to the plastic like black bubble gum stuck to a shoe. She makes a tea. “Here we go,” she says, and takes her first sip. The tea tastes … surprisingly good. Not at all like its dank pond-scum appearance. She likens it to a robust, fennel-flavored dark coffee with a slight aroma of molasses.

She savors the mildly bitter taste and relishes the sweetest taste of all: Hope. Hope that she can stop the disease. Driven to squeeze every last bit of hope from the packet that she can consume, she licks the residue of the BNG from the plastic wrapper.

Only the Chinese neurosurgeon knows its mysterious concoction of oils and herbs. Considered a medicine in China, the West sees it as a hoax or at best an herbal supplement.

Ilene doesn’t care. For decades she preferred holistic and herbal remedies to Western medicine wherever possible. The Boston doctor even said the lozenges contained herbs helpful for menopausal symptoms, and that Ilene could quit taking her hormone replacement therapy.

“We’ll see if it helps my hot flashes too,” she tells Nick. She grasps the cup warming her hands as if its warmth would seep through her body and block the advance of the disease.

Ilene

I sat in the chair with sensors attached to my head, wrists and ankles leading to a computer biofeedback program. The practitioner’s new program had him glued to his computer screen for the first half hour, as he instructed me to relax and think about what was happening to me.

“All of your neurological systems are under tremendous stress,” he announced—as if revealing new information to me. I stifled a snort.

I smiled inwardly—thank God Nick wasn’t in here with me.

I’d found out about the practitioner from a friend and decided to give it a try, hoping it might reveal something I could do to thwart the disease. Nick hadn’t objected, though he asked if I had told him my diagnosis. I had. He’d raised both eyebrows but took me to him anyway and waited in the guy’s living room when I started the session.

“Moreover, your heart, kidneys and liver are not far behind.”

I barely kept from rolling my eyes.

“Now I want you to enter a meditative state,” he said.

I closed my eyes, relaxed my mind and released my concerns about the world, the disease—almost everything. I soon felt a soft, warm glow emanating within my chest. It was like a reassuring light spreading throughout my body easing the tension in my muscles and my mind. From somewhere far beyond my body I sensed a source, more like a vibration deep within my whole body, not my ears, a voice saying:

Everything is as it should be, there is nothing to fear, we are with you.

He ended the meditation before I could respond to the voice.

Afterwards, he recommended homeopathic supplements for my heart, kidneys, adrenals and liver. Nothing for my nervous system. What the hell. I bought four bottles of supplements.

Nick’s eyebrow raised and his eyes rolled a bit when I described the purchases. He tried to keep an open mind, despite his prevailing skepticism. He waited in silence until we left the house to ask how I felt about the session.

“I think he was more interested in his new computer program than connecting with me. He hardly talked to me at all. But the program seemed very thorough and quite amazing.”

“OK, but what about the biofeedback part? Was it helpful? Could it help?”

I paused, recalling the warmth I felt and the words vibrating my body. An odd calm came over me. You’re approaching a nonphysical path. I remembered the voice and my earlier sessions with Dr. Backman. Maybe it is one I’ve been on all this time and didn’t accept it. Maybe it is my deeper spiritual being comforting my consciousness, my ego.

“It’s too late,” I said quietly. “It might have helped earlier, but not now.”

He sighed, stared at the traffic on the highway and said nothing.

I welcomed the silence. I knew the biofeedback machine did nothing for me physically. Perhaps, if I had done it years ago, or consistently practiced meditation? Now it’s too late. I’ll never know. Let it go. Move on. Embrace the journey.

I let my mind go blank and returned to the meditative state I had been pulled away from. Deeper than hearing, I feltthe words that came:

You would not have had the opportunity to learn the lessons you chose.

Bane

The woman and the mother wave to the husband from the bedroom window as he drives off to the airport. They can’t trust the woman’s ability to be alone for more than a few hours at a time. The mother flew out for a few days while he travels to Los Angeles to help the cousin load a U-Haul trailer and drive back to Colorado.

She shifts her weight in the wheelchair. Its cushion provides more comfort than her office chair and scooter. After her first coaching call, she has ten minutes before her next consultation. Just enough time for a bathroom break. She rolls back from the desk and slides the pocket door open. As she hurries into the master bathroom one of the plastic balls on the front wheels clips the side of the door. An indented white streak mars the wood.

“Damn it,” she says and slams the heel of her hand on the armrest. That’s the second time this week she’s hit the doorway. “I’ve got to be more careful,” she fumes. “I’m going to wreck our home if I don’t.”

By force of will she staggers upright and braces herself against the narrow walls of the toilet closet to relieve herself. All this for thirty seconds of relief, she sighs, then swears to get there on her own as long as she can.

By the time she makes it back to her wheelchair, her ten-minute break is gone and she feels exhausted. The phone rings. She speeds through the doorway. The control mechanism scrapes the doorjamb. Another scar mocks her disability.

Silently she curses her carelessness as she rolls up to the desk.

Ilene

For the past year, most mornings I listened to the meditation CD on my personal player. When I started, I practiced “mind over matter” exercises, hoping to find a different cause for my symptoms or stop the progress of the disease. I was still trying that from time to time—getting the BNG was proof of that. However something in me was changing. The voices I felt––I couldn’t really say I heard them, the sensations just permeated my body, reassuring me like nothing else. They let me know that dying was about letting go of my attachment to material things, my body, and my relationships. I didn’t think I had ever been especially attached to material things. I was wrong.

The night after Nick returned from California with Margarita, I rolled near the dining room table where Nick sat. Margarita and Mom had gone to bed. I leaned forward in the wheelchair, placed my elbows on the armrests, clenched my hands together over my belly and glared at the base of the table, straining to quash the ache tormenting me.

“I’m banging into things with my wheelchair. Look at the China cabinet, look at the table, and look at the doors. I’m ruining our lovely home.” Tears gushed as I broke down, dropped my head and gave in to emotions deeper than my attachment to material possessions.

Nick didn’t glance at the table. He squatted down, wrapped his arms around my shoulders, got below my head to catch my downcast eyes. He radiated warmth and love. “All these things can be fixed.” He paused and his eyes moistened. “Later … after you are gone … if I want to. I don’t worry about them. I don’t want you to worry about them either, OK?”

I leaned over the armrest of the wheelchair, reached around his neck, squeezed him tight, and collapsed on his shoulder. I pulled back and nodded my head emphatically as I regained my composure. “Are you sure? It feels as if I’m destroying everything we’ve worked for.”

Nick got a box of tissues and squatted in front of me. Margarita heard me crying and came downstairs. She stood behind me, her comforting hands resting on my shoulders.

Nick continued. “What we worked for is what we have created in the souls of the people we’ve been with. These … things … aren’t what we’ve worked for. What we’ve worked for is the relationship we’ve built with each other, what we continue to build with each other. Banging up material things is nothing compared to that.”

I blew my runny nose and daubed my eyes. “I know, but …”

He didn’t let me finish. He held me again. “But nothing. That’s the way it is. It might be different if you were a reckless speed demon in your wheelchair. You’re just a speed demon.”

I chuckled at his lame joke. “Just wait until I get this thing out of the house. I’ll make you run to keep up with me. That’ll work off those extra pounds you’ve gained since I got sick.”

Nick

I lied to Ilene. I saw the dents, the scrapes and the scratches. They pained me too. They were constant visual reminders—as if I needed them—of what the disease was doing to her. Each scar reminded me of how the disease robbed her of her grace and elegance. Every scratch carried a memory of what she came to call her dance with ALS. I didn’t want to fix the damage. I didn’t want to lose any of those memories of her struggle with the disease.

One night, after Milly had gone back home, the three of us enjoyed the heat of the hot tub as we looked over the snow-covered trees into the clarity of the galaxy above. I sipped wine while Ilene and Margarita had a couple of hits from a joint. When we were complete, I helped Ilene out of the tub, dried her off, wrapped her robe around her, and helped her hobble to the chairlift.

When she reached the top, I watched her tug her legs with her hands to move her feet to the step in front of the footrest. She couldn’t do it. Red-faced, her nostrils flared as she collapsed back into the chairlift and dug her fingernails into the armrests. If she couldn’t do that, I knew she wouldn’t be able to lift her leg to the next step. I guessed that the hot tub had sapped the strength from her legs and arms.

I started up the stairs. “I can’t make it,” she called down to me. The pain in her voice stabbed my heart. She looked down at me as tears filled her eyes. “I can’t lift my leg,” she sobbed as she leaned over her useless legs and gave in to the frustration of her failure.

By the time I reached her, anger had replaced frustration, and her chest heaved as she gasped between sobs so deep I thought she might fall out of the chairlift.

“Can’t you fix this so I don’t have to step up?” she cried out.

I assessed the situation and tried to stay calm even as I clenched my jaw. “One thing at a time.” I said as I squeezed between the chairlift and the wall and stepped over her useless legs.

“Don’t step on me!” she ordered.

I ignored her outburst and positioned myself in front of her. “OK, I’m going to help you stand up. Then I’m going to lift you and put you in the wheelchair.”

“You can’t lift me in your arms, the stairwell is too small,” she retorted.

“I know. I’m going to keep you upright. Just hold my neck. I’ll get under your butt and lift you straight up. I’ll turn, step up and get you in front of the wheelchair.”

“The step is too small. How are you going to turn around?”

I sighed. “Just trust me, OK? I’ve got it all figured out. I’ll use the chair’s footrest for one of my feet while I lift and turn you.”

“Will the chair hold us both?”

I was almost as frustrated as she. Guilt at not foreseeing this issue six months ago twisted inside me. I bit out my response. “The maximum weight for the chair is three hundred and fifty pounds. Together we’re eighty pounds less than that. We’ll be fine.”

“I’m just asking,” she snapped through her glare.

“Ready?” I asked, hiding my guilt behind a granite façade. How else could I make up for my inadequacy? I didn’t recognize that her discovering this new loss inflamed her, turning disappointment into rage. I thought it was all about my failure.

She nodded her head and I bent down. Ilene wrapped her arms around my neck and held on. I pressed her close to me and lifted her upright and in the process squeezed air from her lungs. Quickly she locked her knees and waited for my next move. I relaxed briefly to give her a chance to breathe and to reposition my arms.

Without warning, I lifted and turned her as I stepped up to the floor level and her wheelchair. She twisted in my arms and grabbed the left armrest to guide herself into the seat.

The whole transfer took less than fifteen seconds.

Bane

The transfer seems like an hour to the woman. The need for the husband to make the transfer proves she is losing ground in her fight against me. Anguish surges up from her belly. She hunches forward in the wheelchair, head nearly down to her knees. Her chest heaves out of control. “I can’t do this anymore,” she gasps between sobs.

I’ve broken her spirit.

The husband embraces the woman and pulls her close.

“I’m working on it,” he says. “I have a welder coming out tomorrow to see if we can weld a piece from what I cut off and extend the rail. I’m pretty sure we can do it.”

“I’m not talking about that,” she says. “I’m…”

He cuts her off. “I know. One thing at a time,” he says, hoping the diversion forestalls a descent into despair.

Within two days the welder and husband modify the ramp. The husband fashions a hinged bridge over the first step that folds out of the way when not needed.

The torment from two nights before has eased. The woman evaluates the bridge and new position of the chairlift. “This will work for me now,” she says. She doesn’t emphasize the “now,” She accepts this as another temporary fix. “Watch me.”

She reaches down, lifts her wheelchair’s footplate out of the way, pushes herself out and thrashes two steps inside the stairwell. She leans forward, catches the armrests, twists, and transitions to the chair.

“See,” she smiles up at him. “I can do it just fine now. Thank you for fixing it.”

“Of course, love, whatever works,” he says.

He wonders how long this fix will last. Like her, he keeps it to himself. It is enough for him that he can support her independence and mobility for a while longer.

I will render their little victory hollow. Soon, quite soon.

And Bane scorns.

Bane

Over and over the woman tells herself that she will define me, defeat me. Telling herself that lie and acting on it are two very different behaviors. Her mind is as split as her brain. One side knows she must submit, the other says no. Knowing versus no-ing. Often, she tells family, friends and students that she has accepted my laying waste to her body. Still she rejects the fact that she is helpless before me. Her foolish conceit is that she has a choice. Even now she convinces herself that she has the power to resist my conquest.

A month ago she and the husband started investigating an experimental treatment for ALS. They found a Chinese neurosurgeon injecting olfactory unsheathing fetal cells into the brain’s frontal lobes, a procedure he calls OEC.

The anecdotal reports about the procedure startle the couple. Patients report significant recovery of body functions almost immediately after the treatment. However, the successes appear short-lived. After more than a year of the surgeries, there had been no tracking of the post-surgery results beyond three months, making the long-term efficacy questionable at best.

Her hope that she might defeat me lifts her spirits—just in time for the trip to Hawaii with the cousin. I shall crush that groundless hope too.

Margarita

I drove a convertible up Maui’s west coast to Napili Bay. I figured getting the wheelchair or walker in and out of a convertible would be easier than a sedan. As I drove, the skies darkened and fierce winds forced me to pull to the side of the road and put the top up.

Once in our room Ilene turned the television on to check the weather. Gale force winds battered western Maui. The weatherman cautioned that should the winds reach hurricane level, residents and guests on the western shore should “walk, do not drive, to higher ground.”

“Yeah,” Ilene quipped, “like I’m going to walk anywhere.”

I busted out laughing at the irony and we laughed together.

Our trip was off to a good start.

The next morning the skies cleared and we put our bikinis on. Ilene frowned at her belly. In just three months, it had plumped up like rising dough lapping over a pan.

“Look at me, I’m getting fat,” she whined.

“Just more of you to love,” I said, hoping to cheer her up.

We left the wheelchair at the top of the stairs leading to the beach. Three months ago she could use the walker. I held on to her on one side and she held the handrail on the other as she flipped one leg, then the other down the three steps. On the third step one leg gave way and I had to hold her up. She glanced at me, eyes wide with shock or pain as she clutched my arm encircling her waist. Three months ago she negotiated these very same steps alone. True, she had to hold the railings for support then too, but she could do it by herself. Not now.

The air and sand were warm and I went for a quick swim to test the water. It was colder than when we were here in October. Ilene wanted to swim anyway.

“No problem,” I said. “I’ll find some buff dude to toss you in the water.”

She didn’t like the idea of a stranger taking her out at first, so I turned it into a game.

“You pick ‘em, I’ll hook ‘em,” I said.

Like catty teenagers, we judged the men walking down the beach. Finally, I said, “That’s the one.” I jumped up and ran toward a twenty-something guy, calling out, “Hey, dude.”

As an active surfer back home, I knew just how to talk him into helping my disabled “mom.” He looked embarrassed at first, then he glanced at Ilene and I got my way like usual.

“Hey, mom,” I yelled over the sound of the surf as we approached Ilene. “This is Greg. He’s going to carry you out into the water.” I explained the strategy for getting Ilene through the surf. He nodded, bent down on one knee and scooped Ilene into his arms.

“Thank you,” Ilene said as he eased her into the water just past the surf line.

I handed her a noodle for support and helped her get her fins on. By the time we were ready to swim out the reef, Greg had disappeared down the beach.

“How am I going to get out?” Ilene asked.

I grinned. “No worries, I’ll find another hunk to carry you out.”

She laughed. “I’m sure you will,”

I stayed close to Ilene as she swam. She didn’t ask for help, but I made sure I was near.

After only twenty minutes, her kicking had slowed down to intermittent flutters. “I’m getting cold,” she called out, “Can you help me in?”

“Absolutely. You swim in close to shore and I’ll find somebody to help you out.”

I spotted a muscular, good-looking guy lying on the beach, told him about my disabled “mom,” flashed my lopsided smile and got him to pluck Ilene from the surf.

Ilene thanked him profusely and I chatted with him as we walked back to his spot on the beach. He was curious about Ilene’s condition—and me. I thanked him for his help, although I blew off his inquiries and offer of a date by telling him I was engaged.

When I sat next to Ilene, she quizzed me about how I got him to help and why I didn’t respond to his interest. I told her I wasn’t interested in dating anyone because I didn’t know who I was anymore, now that I knew for sure I was adopted. She studied me silently. I knew something uncomfortable was coming.

Who do you want to be?” she asked.

I fidgeted with the sand and scanned the horizon. “That’s just it. How do I know who I want to be if I don’t know who I am right now? Everything I was told about who I am is a lie. And everybody knew it but me.”

She repeated the question with a special emphasis. “Who do you want to be?”

“I don’t knoooowww,” I wailed playfully to avoid digging deeper to answer her question.

She let it go … still, I knew she would bring it up again—and again—until I had some sort of answer. And I wanted her to. Just not yet. I wasn’t ready.

“Do you think living with us will help you find that out?”

Just the opening I needed. “Absolutely,” I said. “I can’t do that in L.A. There are too many distractions, too many responsibilities to my business and people. My parents chose me to make their family complete—I love them for that—and I’m grateful. But they never told me I was adopted. Now I get to choose my family, and I choose you and Nick.”

Ilene

I smiled as I searched her blue eyes. I loved her energy, her positive outlook. She lightened the atmosphere of our home and eased my burden on Nick. But she needed to be moving toward life, not running from her life. I didn’t want her making her life about caring for me. Determined to help her build real self-confidence, I told her it wouldn’t be easy. I’d push her to do things for herself, for her own growth.

Her eyes lit up and she clapped her hands. “I’m counting on it. It’s going to be awesome.”

My heart, warmed by her excitement, radiated outward. The sun warmed my skin and penetrated inward. Gratitude surged through me as I gazed at waves rolling toward me. Each wave was the same, yet different, as it swirled and caressed the sand. I felt the ebb and flow of the sea, a force older than life itself, and melted into it. For the moment, I felt calm and unconcerned about the softening flesh hanging from my bones; flesh that threatened to become as squishy as a jellyfish swept this way and that by the tidal waves of this disease.

At the end of our first foray on the beach, Margarita helped me to the three steps leading up to the lawn. I held onto the railing with one hand and Margarita with the other. I couldn’t lift either foot five inches to the first step. My chest caved in and I wanted to yell my pain. I felt my face knot as I twisted toward Margarita.

“I’ll do it,” she said. Before I could ask, she lifted each leg to the next step. I had to tug on the railing and her, to pull myself up each step. A shiver—not from the cooling breeze—shook my body as I fought to keep tears from rising.

The next morning, I descended to the beach clinging even more tightly to the handrail and Margarita. Overnight my legs seemed weaker than the day before. When Margarita reported that the water was even cooler, I decided not to go swimming.

That night, I lay in bed giving thanks for the day before going to sleep. I chanted a mantra inwardly. I will fully use whatever physical capability I have until I choose to stop. If I have to leave this life sooner rather than later, I will leave it well spent. I will use up as much of my physical capability as I can endure. I choose to reject ALS every step …

I chuckled at myself. Really? Isn’t there another word? …of the way.

Nick

Every morning and evening I’d called to hear how Ilene and Margarita were faring. When I got up on the fifth morning, I found Tasha had died near the fireplace. Tears filled my eyes as I stroked the white fur of her motionless body. She was only eight years old. I skipped the morning call, unsure about whether to tell Ilene and ruin her trip. I called that night, nervous and hesitant. I shared the bad news despite worrying that it would spoil her vacation. The next day she told me about how the two of them had made an altar on the dresser that night with an orchid wreath, which they later swam out past the breakers to the current Hawaiians called the Molokai Express.

Our hope for a “this or better” year staggered off on a rocky path.

∞

After Hawaii, Ilene finds home cold, even boring without her cousin to lighten things up. She hopes Margarita’s return to live with them will lift her spirits. The days return to familiar routines. Nick gets up early, makes a latte and descends to his cave to write—and cry in silence. Ilene wakes up mid-morning and meditates, seeking a state of openness that might let understanding emerge from her silence and help her discover the lesson in the disease. She gets up, makes her protein drink and coaches clients from ten to three. He makes dinner, and she reminds him that he isn’t getting enough exercise. As usual, he puts her off.

She has learned to schedule clients to ensure she has one or two opportunities to sit and put her feet up during the day. Her inability to walk more than a few dozen steps forces blood to collect in her feet instead of being pumped up her veins to her heart. The longer she sits upright, the more likely her feet become painful.

She recalls how she stiffened her arms slightly behind herself so Margarita could support her walking in wet sand one last time before they left Hawaii. One last time to feel the texture of sand giving way beneath her feet and between her toes. One last time to feel the sea swirl over her feet. She swears to walk the house as much as possible. I’m going to walk as long as I can, no matter how hard or halting it might be. I am a warrior. I am not giving up. Ever.

Midday she grabs a handful of printed e-mails, shoves away from her desk, lurches two steps to grab the armrest of the loveseat and twist her body into a controlled fall to the cushion. She uses her hands and arms to lift her legs to the far armrest. Last, she picks a throw pillow from the back of the loveseat, shoves it behind her head, and lies against the other armrest. The simple shift from chair to couch demands conscious forethought.

Ilene’s chest heaves with a long sigh as she waits for her puffy, purple feet to shrink and become pink again. Staring at the feet she ruminates: It takes six times the effort for me to do one sixth of what I could do last year. No wonder I tire so easily.

She re-reads the e-mails. One offers a ray of hope. Through the course of researching the OEC surgery being performed in China, she comes across a Chinese herbal treatment called BuNaoGao, or BNG. The American agent for both the BNG and the Chinese surgeon has an adult son with ALS. For the past few years he has devoted his life to finding alternatives to Western medicine that might help his son, and he shares that information with others.

According to the agent, the Chinese do not consider ALS a terminal illness. They claim their herbs stop the disease’s progression. The surgical procedure is experimental, Ilene learns, and costs twenty-five thousand dollars. The surgeries are booked out a year in advance.

Ilene studies her feet propped up on the loveseat’s armrest. They’re pink and not throbbing. For how long, she asks, for how long? She works her way back to her desk and sends an e-mail to the agent: When can you call me? I want to know more about BNG and the OEC.

Hopefully, he will reply before I get any worse, she muses. Hope, it’s all I have. Breathe. No that’s not accurate. I have Nick, family and friends. I can still have fun.

“I’ve found a contact person for the Chinese treatments,” Ilene tells Nick after dinner. “I sent him an e-mail asking him to contact us.”

“How long do you think it will be before he contacts you?” Nick asks.

“I don’t know, but with a year-long waiting list, maybe we ought to get my name in now. I can get the BNG sooner. Maybe only two weeks.”

He becomes pensive, apparently lost in thought. “Maybe the agent will have more recent data on the effectiveness of the OEC surgery, but let’s get the BNG going as soon as possible.”

“I hope so,” Ilene says, fighting to keep her voice even. She cautions herself against the hope yet can’t stop the feeling.

Bane

The husband watches and waits from below. The woman braces herself at the top of the stairs. She flails her foot to the edge of the step. He has unfolded the chairlift’s seat and the footrest to make it easier for her to get to the seat. The woman is satisfied that she has mastered the balancing act of getting into the chair.

The electric motor whirs and the gears grind the lift slowly down the stairwell. The husband moves the electric scooter close to the chairlift. She only has to take a single step to reach it. It’s so simple. All she has to do is plant her feet on the floor, push out of the chairlift, grab the scooter handlebar and back rest to balance herself, twist and sit down. She has done it at least a hundred times over the last three months. She thinks she has mastered the transfer.

My advance is still subtle. She’s unaware of shifting more weight to her arms when making transfers recently. The handlebar twists under her left hand. Her weaker right hand misses the back rest and drops to the seat. She slumps downward; her knees are about to hit the scooter or tile floor. The husband grabs at her, roughly catching her around her chest and waist. One knee hits the scooter’s footrest, although not with her full weight. She yelps with pain as disbelief, humiliation, and anger ride the adrenaline surging through her body. He lifts and turns her to position her on the scooter’s seat. The twisting motion sends a stab of pain into her right knee.

“Careful! I don’t bend that way,” she barks.

“I’m trying,” he says, frustration and guilt colors his voice and face red.

His frustration provokes the woman’s aggravation, especially when she discovers she can’t move her foot to relieve the pain. “Move my foot, it’s twisted,” she orders and grabs her knee with one hand. She feels as if the second it took him to release her foot lasts an hour.

“Are you OK?” he asks evenly.

She glares at him in disbelief. “Of course I’m not, my legs don’t work and I almost made it worse by falling, then you twist my knee getting me into the seat.”

“I’m sorry,” he says. “I tried to catch you.”

Fear and anger fuel her lashing out. “Well, you didn’t. No, that’s not true. You did, just not quickly enough. Then you twisted my leg.”

He stands beside her in silent helplessness while she takes a deep breath. Guilt surges from the churning in her belly. Breathe, she tells herself, trying to return to her earlier meditative state. “It’s not your fault,” she says as she rubs her knee. Tears flow, tears she has hidden from him and herself. “It’s my fault. I wasn’t careful enough.”

The husband envelops her shoulders within his arms and draws her close to his side. She cannot see his anger and fierce determination. His embrace warms and comforts her. “It’s not your fault either,” he murmurs. “It’s the disease.”

He is right, of course. His anger and determination do not affect me.

She sighs deeply and asks for a tissue as she guides the scooter into her art room.

My victories no longer surprise her. Still, she refuses to capitulate. Stubbornness masks her fear of approaching defeats.

***

Excitement swells the woman’s chest when her electric wheelchair arrives. The technician reviews the controls with her and she chooses red fenders before trying it out.

As she darts and spins around on her new wheels, she grins and tells the husband, “You’ll have to run to keep up with me.”

“Nothing new about that,” he laughs. “Let’s check the fit through the bathroom doors.”

The woman easily maneuvers the chair through the main floor guest bathroom, then steers to the smaller doorway to the master bath. She has maybe a half-inch clearance on either side. She slows the wheelchair as much as possible and inches through the gap.

“The outer door makes it too tight a fit,” the husband says. “I’ll take the door off. That will give you an inch clearance on both sides. Just don’t speed through it.”

The second doorway, to the en-suite toilet, is far too small for the wheelchair to pass through. I’ll be fine with this, the woman tells herself. I can get in and out of the wheelchair on my own. Nick can install more safety bars to help me get to the toilet.

Seven weeks ago she congratulated herself that she did not need an electric wheelchair. I command her body to shrink from its responsibilities. She focuses only on the present moment, always fighting to maintain what she has. Only in moments of deep emotion does she think about what she has lost—and never about what she will lose.

Ilene

I finally got to talk with the agent about the OEC surgery and BNG treatments. He confirmed what I had learned about OEC on the internet—namely, that it appeared to stimulate a significant improvement initially, but that the changes diminished over time. Worse, no follow-up studies had been conducted beyond ninety days. However, he reported that his son appeared to have stabilized with little further deterioration as a result of taking BNG.

I asked to be put on the list for the surgery. It was so far in the future that perhaps there would be some longer-term studies available before making a final decision. As for the BNG, the sooner, the better. Nowadays, sooner was always better. I got the information on how to contact a neurologist in Boston so I could start the BNG supplements.

Again hope rose in my heart. Maybe, just maybe I could stop what was happening to me.

Looking back, I see how quickly hope returned whenever a new possibility appeared. Even after a fall. Even after needing electrified wheels to get around the house. We were learning to live in cycles of failure, adaptation, resurgence—and failure yet again.

Ilene

I insisted on holding on to doing what I could as long as I could. Case in point: getting in the Jeep. I’d grab the strap attached to the roll bar with one hand and used my other hand to lift my left foot to the Jeep’s running board. As Nick lifted me, I pulled on the strap with all my strength and swung my butt into the seat. My excuse? I knew his shoulder wasn’t back to normal.

My mood, like the Jeep swaying through the curves down Turkey Canyon, swung between bittersweet pensiveness and curiosity about our current excursion: to get me fitted for an electric wheelchair. It would ease the strain on my legs, shoulders and arms and give me greater mobility. Regrettably, it symbolized another defeat, another surrender.

“It has to be small enough to get through the bathroom door,” I reminded Nick. After all, I had to have some measure of privacy.

“I know, hon, I’ve got the measurement. I just don’t know if they make them that small.”

In just two weeks, I’d become completely dependent on the scooter when I left home. I could only walk about twenty-five yards—with the braces, walker and a counter or someone to hold on to. How long before I’d be completely dependent on a wheelchair in my house? The uninvited thought made me shudder. I had to refocus on finding something to stop this from happening.

In the parking lot, I held onto the overhead strap with both hands as Nick lifted me out of the vehicle. I took one step to the scooter, grabbed the handlebar, twisted my body and fell into the seat. Not graceful, but on my own. He stood by, ready to catch me if needed.

In Apria Healthcare’s reception room, I got out of the scooter and sat in a chair beside Nick and held his hand. I wanted to appear as if I were a normal person, not an invalid. I squeezed his hand and gazed up at him. The pain of another defeat I didn’t want to accept revealed itself in the tears that formed in my eyes and threatened to flow unchecked.

Nick wrapped his arm around me and drew me close. “It’s OK, baby. It’s OK,” he said. If I had been home, I would have let the tears flow. Not here. Not in public. I blinked my eyes and shut the tears down just before the sales technician walked out.

We explained our needs. He disappeared somewhere and returned with two models.

Nick helped me into the first, and I made the best of it. “Wheee, look at this!” I wheeled the thing around gleefully, turning in one place and moving forward and backward with a light touch on the control stick. “This is great. Let’s race.”

Nick grinned down at me.

“She’s a natural,” the technician said, “I’ve never seen anyone take to the controls so fast.” It took another forty-five minutes for him to get all of my leg, hip and back measurements and for me to decide on a model and seat cushion that would fit me best.

“You will want the seat that feels the most comfortable,” he said. “You will be spending a lot of time in it.”

His off-handed comment stirred up my misgivings again. I still couldn’t imagine being stuck in a seat all the time. To myself alone I admitted that he was right, even though I didn’t want to think about that now. “I like this one, the smaller one with the red fenders.”

***

I swayed as we passed through the tight curves of the wooded canyon leading to Denver. Only last month I had given up driving, and now, as Nick drove me to Betty Lewellen’s birthday party, I felt like an eight-year-old being chauffeured by her father.

The restriction, the dependency, soured in my gut like bad food. It’s not like he objected to taking me anywhere I want to go. I objected. To me.

I worried how much more difficult it would be for him, and for me, if—or is it as now?—I lost more functions. Every time I got weaker or more dependent, it was another burden. He said we would get through it together. He had to be angry about it. Like me. And he had to release it.

“Are you mad at me?” I asked.

He kept his eyes straight ahead. I could barely hear him over the whirr of the snow tires on the interstate. His chest heaved with a sigh.

“No.”

“Well, I’m mad at me. How can you not be mad at me?” I jabbed.

An infernal minute or two passed. “Well, don’t you have anything to say?”

“I’m thinking,” he said, probably hoping I would give up.

I waited, alternating between staring at the road and at him as my irritation grew.

“It’s just that we can’t do anything about the disease,” he said at last. “It isn’t your fault that you have the disease, so how can I get mad at you? It’s not like you did it on purpose.”

“But what if I did? What if, between lives, I decided to have this disease?”

Silently he concentrated on his driving, Finally he said: “I guess that means that I agreed to go through it with you. It doesn’t change anything. If you chose this for some kind of ‘lesson,’ then I must have chosen to be with you for some kind of ‘lesson’ too. All I know for sure is that I will be here with you, that I will take care of you, no matter what happens. That’s my job now.”

His words tumbled over me like an avalanche burying me under dependency and guilt. I glared out the window again as we passed Denver’s outskirts, blinking back hot tears.

“No. That’s not the way it’s supposed to be. We’re supposed to be equal partners. I don’t want to be dependent on you. I don’t want you to have to take care of me.” In the window’s reflection I saw him look at me, his face slack with hurt. He dropped one hand from the steering wheel to pat and squeeze my leg. It was a light squeeze, yet his fingers sank into my softening flesh—flesh that was solid muscle not that long ago.

“I know you don’t, hon, but this is our reality now,” he said. “There are …”

“This reality sucks,” I blurted, cutting him off with my anger at … whatever.

“I know it does, but there are lots of ways for us to keep being partners. Ways we haven’t even thought of yet.”

My angry fever started dissipating. I put my hand over his, laced my fingers between his and squeezed. He squeezed back and we drove on in a comforting silence.

“You are the bestest,” I said, initiating a familiar ritual.

“No, you are the bestest,” he replied.

Nick pulled into Betty’s driveway. “Just help me to the door,” I told him. “I won’t need the walker or scooter once I’m inside.”

He raised an eyebrow, silently questioning me.

“Really. I’ll be fine.”

He helped me to the door, greeted my friends and said he would be back in two hours.

On the way back up the mountain, I said, “I should have had the walker. It would have been less of a strain than grabbing the furniture and counters for support.”

I hated admitting that.

∞

Ilene’s friend Jenn calls and asks, “How would you like to do some horseback riding?”

Ilene’s eyes light up. “Sure. That would be fun.”

Over the past summer Ilene had investigated Internet websites promoting programs with titles like “Horse Leadership” and “Horse Therapy.” Back then she had hoped it might ward off the disease. Now the opportunity to ride a horse once again satisfied her.

Jenn, who is a psychic counselor, explains that she recently did a psychic reading to help a woman find her lost dog. “Her name is Tanya. She’s a horse trainer and has her own horses. I asked her if she could let you come ride.

“Her mouth dropped open when I told her about you,” Jenn says. “She told me she just had a dream about a small woman with light hair who had some problem and was going to ride with her. What do you think about that?”

A couple of days later Nick comes home after the first meeting of his newly formed writers group and revealed that the woman Jenn talked about was in the group.

This can’t be a coincidence, Ilene thinks.

Nick

It was about three in the afternoon when I helped Ilene out of the Jeep. She clung to me as I helped her up the steps to the door of the A-frame house.

Tanya opened the door wearing bib overalls and a blue flannel shirt. She was powerfully built, about six feet tall and a hundred sixty, maybe seventy pounds, with no apparent fat.

“Hi, I’ve been looking forward to meeting you,” she said, immediately putting Ilene at ease with her warm smile and unpretentious manner. “Nick told me so much about you, and Jenn too. Did he tell you that I already know you?” she asked. “I’ve never met you, but I know you from a dream I had. I dreamed about helping a small woman with blond hair.”

The introductions had to be short because of the dwindling light and temperature.

Ilene

I studied Tanya’s strong, weathered hands. I’d safe with her.

“I was going to ride with you,” she said, “but the snow and ice on the trails makes them kinda slippery. I think I’ll just walk with you. Can’t go very fast or far in this stuff anyway. So are you ready?”

It took both of them three tries to get me up and in the saddle. Tanya adjusted the stirrups to fit me. I had to tell her that I couldn’t squeeze the horse with my legs.

“That’s OK. You don’t need to.” Tanya clipped a lead to the hackamore, handed me the reins, and led the horse away from the house and into the woods. Like a child at a fair, I clutched the saddle horn with one hand and the reins in the other. The horse’s pace was slow, yet the rocking back and forth forced me to clamp the reins over the pommel with both hands.

Grinning, I relished the gentle sway of the horse beneath me. I savored the freedom to move naturally through the woods. It was like the walks I used to take through forests. The horse compensated for what I had lost.

Twenty minutes later the Tanya led us out of the forest. Nick made several photographs as we came down the trail. “The trail was pretty icy,” Tanya said. “Tchaiko is sure-footed, but I think we should go down the road for a ways if you want to ride some more.”

What I really wanted was to ride fast and feel the wind through my hair. I accepted that going down the road for a bit was enough. Then the horse stopped and wouldn’t move. I’d been shifting my weight because my sit-bones were getting sore.

Tanya asked if I was getting tired and I had to admit I was. My back and abs were getting tired from the rocking, though I didn’t want to quit.

“Tchaiko’s picking that up, Tanya said. “He knows you are uncomfortable and he’s protecting you. Let’s head back.”

I vacillated between the pleas coming from my heart and mind for more time on the horse, and what my body was telling me. It wanted to obey me, but … .

I nodded my head, letting some sadness creep in.

∞

Ilene and Nick return to Dr. Backman for more exploration of life between lives. Ilene gives her a list of questions she wants asked during the session. Under hypnosis, Ilene sees and speaks with Malachi, the white-robed spirit guide who seems to speak for several other guides.

Malachi laughs at her stubbornness, her desire “to do it all alone.”

Miffed by his accusation, Ilene retorts, “It’s my life, and my lessons.”

Malachi gives her a stern look. “Yes, dear one, AND you are not supposed to abandon your higher self.” When Dr. Backman asks what that means, Ilene says, “I get it. I get so thoroughly involved in the earth plane that I doubt and discount any other plane.”

Dr. Backman asks Ilene to seek advice from Malachi. Captured on the session’s recording, Ilene replies, “He’s not quick to give advice—which is probably why I abandoned him.” Still, Ilene asks him to tell her ways for her to know he—and other spirit guides—may be near her. He reminds her: “When you call me in your meditations, I am present. When you feel weight in your hands, I am present.”

Dr. Backman moves on to Ilene’s urgent reason for this session. “What is the purpose of Ilene’s illness and how is she to deal with it?”

Malachi’s presence blends with Ilene’s. Her voice takes on an uncharacteristically slow and deliberate tone. She reports: “Malachi smiles softly at me and I feel humbled, as if I should know the answer to the question. He says, ‘It is a way for you to teach the strength of the human spirit to others. But you need to be careful when you get prideful’.”

“Why?” Dr. Backman asks.

“It taints the purity of the experience and lessons,” Malachi says. Trying to bend things to your will is stubbornness. You love to be in charge. This is about learning to have trust and faith on a more complete level. You don’t believe you are in good hands and can be cared for.”

Dr. Backman asks if the illness is about Ilene not feeling deserving. “No,” is the reply.

She asks if Ilene is on a “fast track” of some kind, and Malachi chuckles before answering. “You are always in such a hurry.” Ilene isn’t sure whether he is talking to her or to the hypnotherapist, and she acknowledges that she, Ilene, chose a fast track for herself in this lifetime. Crying softly, her voice barely above a whisper, she admits that her illness could be part of the “fast track to becoming a healer.”

Dr. Backman addresses Malachi directly: “Is Ilene likely to return to another incarnation quickly?” He replies, “You always have a choice about that. You can take as long as you want, and you could make a quick return.”

The therapist shifts the focus to Ilene’s higher self, soul, and spirit. She asks her to identify her own path in this and future lives.

Slowly, Ilene says: “The illness is about learning humility, trust and faith,” and adds that the spirit guides are telling her that she is here to learn how healing energy works.

“Malachi says he is tired of me not trusting that work. He wants me to trust that I can read energy, that it is real, that I can direct and work with it. Whether it is sensing or sound, there is a whole realm of energetic work, and I keep discounting it. He’s tired of my pushing it away. There is learning for me with this illness. I need to experiment with it more.”

Dr. Backman asks a question Ilene had written about the renewed presence of Margarita in her life. The reply comes: “It is a fine relationship, he says, and I can trust that there is a need for both of us to be connected right now; that it is important for both of us.”

When the therapist turns to a question about Nick, Ilene weeps as, in a brighter timbre than Malachi, she responds from the perspective of her higher self. “I am to show him that he is more than he believes he is capable of. In some ways I am his teacher. He gets confused as to what is real strength. He and I have similar lessons. He is stubborn too and tries to do it all himself. So both of us are learning how to trust and work with others—not to do it alone.”

Dr. Backman asks if having ALS is more likely for an older soul.

Malachi says, “Souls are given what they can bear.”

Ilene reports that her higher self adds, “Nick doesn’t think he could bear the disease, and he underestimates what he can handle, because he separates himself from others. I’m teaching him about trust and dependency as I teach myself. He’s given me lots and taught me lots, not necessarily in this lifetime. This is definitely another contract and an agreement between us.”

When Dr. Backman asks for anything else the spirit guides would like to share with Ilene, Malachi says: “Stop feeling sorry for yourself. Welcome this as a gift. There are opportunities here that you can’t receive in other states of being. Stop seeing the disease as a punishment.”

On the way home Ilene shares what she can remember with Nick and plays the recording. The shifts in her speech under hypnosis comfort her and authenticate her vision of the reality she’s been seeking to understand.

She recalls the scimitar dream. Maybe the figure floating through the gap of the rotating scimitar was really her higher self passing between one plane of existence and another.

Bane

Her vision eludes me. Her reporting of an entity in a white robe is a delusional fantasy. It is not worthy of my consideration. One report was accurate. I am not a punishment. Neither am I a gift. I simply am. I conquer because I can.

On Christmas Eve, the three decorate the ten-foot tree the husband cut and hauled up their hillside property. The woman’s mother will arrive soon to spend some of the holidays with them.

The woman studies the tree, directing the husband and cousin. “Nick, please be careful,” she cautions the husband high on a ladder as he stretches, one hand on a wall for balance, to reach the top of the tree.

“I’m OK,” he says.

She can’t help with the tree … a weight like a dumbbell collapses her chest. It sinks into her gut and twists, threatening to rise up as tears. His cup of eggnog is empty. She puts it on the seat of her walker and shuffles to the kitchen. I compel her to use the walker to cross any open space. At night, it stands next to their bed, a constant reminder of her loss.

Just before the husband takes her mother back to the airport, he tells the woman, “I’m going to get a lightweight wheelchair for you and Margarita to take to Hawaii. The one we borrowed from the Muscular Dystrophy Association for our trip in May is too heavy for you two.”

He returns with a “companion” wheelchair. It does not have the high wheels that will allow her to move on her own. “It’s a lot lighter and easier to handle for the trip to Maui than the ones with big wheels. Besides,” he says, “you’ll have your electric scooter, and soon an electric wheelchair for everything else.”

Ilene

On New Year’s Eve Margarita, Nick and I went to a party at Jenn’s home. We had to use the new wheelchair because the main floor of the home is on the second story and accessible only by stairs. Nick wheeled me around to meet the other guests while Margarita disappeared to play with Jenn’s 4-year-old daughter.

Nick parked me in the middle of the dining area and went to get me a drink and appetizers. Without the high wheels of a standard wheelchair, I couldn’t move on my own. Even if I could get my feet off the footboards, I couldn’t use my legs to push or pull against the floor.

I sat in the middle of the room and smiled while everyone else milled around looking over my head. Mostly they avoided making eye contact with me. I felt like an abandoned mannequin, stuck in everybody’s way because I couldn’t move.

By the time Nick returned, my eyes were aflame from forcing back angry tears.

“Don’t do that to me!” I hissed as he handed me a drink and plate of hors d’oeuvres.

He saw my eyes and heard the indignant fury in my voice. “What do you mean?”

Clueless.

“Just get me to the side somewhere, not out here in the middle.”

He moved me to the side. Kneeling down so he was eye level with me, he lowered his voice. “What’s the matter?”

“I was in a fishbowl there and everybody was staring at me,” I muttered, “I couldn’t get away.” I fought back tears as my eyes bored holes into his thick skull.

He looked around at the hosts and guests chatting amicably among themselves. Still not comprehending my anguish, he said, “Nobody’s staring at you.”

“I can’t move. Everybody has to walk around me.” I grabbed his arm hard and glared into his eyes, “Don’t ever do that again.”

“But I thought you would want to be where you could talk to everybody.”

“I don’t want to be in the middle.”

“OK,” he said. He still didn’t understand, but he hovered nearby while I regained my composure and let my emotions drain. For the rest of the evening, he didn’t stray far from my side. After dinner he rolled me into the family room and helped me into a corner of the couch as everyone gathered around to listen to Jenn.

Bane

The psychic distributes pens and small slips of colored paper to everyone. “Write down at least one thing you want to leave behind with this year. Then we will burn it in the fireplace.”

The woman stares at the paper then writes: “I leave behind my fear of ALS.” She folds the note and gives it to the husband to put in the fire. To herself she swears to find the gift I bring.

I offer only nothingness, fear and despair.

Two hours before midnight, weariness overcomes her. She doesn’t have the energy to stay and celebrate the New Year. Home again, and in sleepwear, she, the husband and cousin manage to stay up late enough to see the ball drop in Times Square. She lifts her eggnog and repeats a toast they had come up with on the Hawaii trip, “This or Better.” The three of them promise to make that catchphrase their mantra for the New Year.

I will permit nothing “better” for her. Only worse.

Ilene

Nick fell asleep quickly while I stared out at the starry night sky. A three-quarter moon dusted silver across the snow-clad pines.

And me? I wondered about the oncoming year.

What are the lessons my soul desires? Can I respond to the lessons (and whatever this disease is) with curiosity rather than judgments about better or worse? Can I access my spirit guides more effectively? Can my mind be still enough and my heart be open enough to hear them?

Ilene

I called Lorry to discuss my final workshops. He and his wife were my oldest friends in the coaching community. We had attended the Coaches Training Institute leadership program six years earlier. Last spring, long before being forced to depend on the walker for mobility, long before I knew how quickly I would decline, we had planned to lead two workshops in Denver so he and Wendy could visit me and Nick in the week between the two courses.

I wanted to work with him one last time, but my weakness sapped my confidence. I felt ambivalent—not my normal state. Then again, nothing was normal anymore.

“I don’t know if I can lead any longer,” I told him. I couldn’t keep my voice from cracking with repressed grief and apology.

“Whatever you decide is fine with me,” Lorry said, “And I still want to lead again with you. I trust that you can do it and we can work out any issues that come up.”

I hesitated, torn between desire and practicality. “OK, let’s do the first weekend. ‘In The Bones’ is my favorite workshop. It will be a good one for me to end on.”

The next day I leaned heavily on the walker and slogged down the hospital corridor toward Dr. Ringle’s office with Nick at my side. I could last about a hundred yards with it—if I pushed myself hard. So I avoided distances where possible. I minimized my limitations when talking to Nick, but I didn’t go out very much anymore, even to movies and malls, especially the malls. If I went to the grocery store with him, I used the electric shopping carts.

Dr. Ringle performed the ritual muscle testing. Even though I put everything I had into the test, I felt weaker. He felt it too. I joked with him to hide my embarrassment and my failure to meet my expectations in defending my body. We laughed—my main way to relieve frustration.

“I want you to do a respiratory evaluation,” he told me at the end of the examination.

I gulped. “Why? I’m breathing fine.”

“Exactly,” he said. “We need to do this now while you are breathing well so we have a baseline for comparison later.”

I felt my chest cave as if all the air had been sucked out of my lungs. He’s preparing me, preparing me for the future he sees. A future I still wasn’t ready to admit.

“Oh, sure, OK,” I mumbled. It made sense. My immediate need though was more important. “I think I need a scooter. Will insurance cover that?”

“Of course,” he said. “I’ll write a prescription right now. Unfortunately, ramps for your home or lifts for travel are not covered. Those aren’t considered medical issues.”

“No problem,” Nick said. “I can take care of those things.”

I left the hospital glum yet uplifted. The pulmonary examination meant Dr. Ringle saw that as the next step in my decline. At least a scooter would give me back mobility and independence.

That night Nick helped me walk from the chair lift to the hot tub. I fluttered my buoyant legs in the hot bubbling water and let myself be absorbed by the vastness of the Milky Way sparkling beyond the tree tops above. What will follow this life I’ve loved so much?

Nick

Ilene glared at me, her eyes, boxed and hot. “I don’t need a wheelchair right now,” she said. Her voice, pitched higher than usual, bit the air between us. “A scooter will do just fine.”

I stayed calm. “Our deductible has been reached for this year,” I reminded her. “We’ll save some money if we get it now instead of waiting until sometime next year.” I bit back saying early next year.

“OK, but can we check the paper for a scooter too?”

“Of course. I’ll keep checking the classifieds and calling the medical supply companies.”

By the time I found the right medical-equipment supplier to work with our insurance, we couldn’t get an appointment until December. When I learned that insurance would pay only for an electric wheelchair, not a scooter, Ilene grew angry. No one said it directly, but the message was clear. Why spend money on a short-term solution? She had to prepare for the worst-case situation. She wouldn’t give in to that thinking. It would be admitting she had no choices left.

Bane

She yearns to be active. The muscles in her calves beg for stimulation. The motor-neuron cells I’m killing cannot respond. My victory there will complete the first phase of my conquest. Denied stimulation, her muscles must surrender to entropy. They devolve into flaccid flesh. Only her sheer willpower makes them move. But not for long. Nothing in her legs moves without conscious forethought. Motor neuron cells I’ve unsheathed touch muscles that scream through twitches at the unprotected contact. She fears most the twitches—as she should. They signal the nerves’ protest against the impossible demands made on them before they burn out and die.

The woman still believes there must be a reason she has this disease. She wants to figure it out, find a gift or a lesson hidden in my attack. She now knows the answer will not come from mere doing. I block that line of thought. She has come to believe the answer must come from some other source. She plops down at her desk and opens her computer.

Jesus,
you have
to take
my feet,
my legs
my hips
away--
to get me
to sit still?

Oh, I will make her sit still. Be assured of that. More still than she can imagine.

Ilene

I didn’t believe Jesus, or any other spirit guides, would intervene with my illness. I believed I touched my guides though, that somehow, I sensed them and found reassurance from them through my poems and other writings. They gave me the strength to continue my journey.

Bane

After dinner the woman and husband sit at the dining room table discussing their schedules for the rest of the month. He sips from a half-empty glass of wine. Muscles in her right thigh twitch. Fidgeting with her pencil, she stares out at the darkening forest and then toward the husband. Twisting just below her heart like a rag wrung of its last drop of water—or blood—lies admitting another defeat. It’s time.

“Honey,” she pauses, waiting for him to look up from his calendar. “I have to stop driving. It’s getting too hard.” The confession, too long in coming, depresses her voice to a whimper.

He sips at the wine, gazes over the rim of the glass and raises his right eyebrow. “Oh. What makes you say that?”

She finally reveals how she’s been using her hands to help her legs shift to the pedals, that now they are almost too weak and heavy to move. She can barely push the clutch in.

“OK,” he says. His voice sounds neutral—but behind his blue eyes, sadness betrays him. “I’ll take you wherever you need to go from now on,” he says, his voice barely audible.

He gets up, walks behind the woman and wraps his arms around her shoulders. Bending down, he sniffs her hair and whispers in her ear. “It’s OK, honey, we’ll get through this too.”

∞

Ilene sits in the Jeep with Tasha, reviewing the week as Lorry, Wendy and Nick scramble up some pine tree-rimmed rocks off the road outside of Breckenridge. Nick starts making pictures of the two of them for a drawer they asked her to make after seeing the ones Ilene had made for her mother and sister. They’d had a good day exploring Breckenridge with her friends, even though she could only walk about a hundred yards at a time before having to rest. Tasha sits erect, watching as if on guard before laying her head in Ilene’s lap. It had been a good week for Ilene, leading her last workshop with Lorry––despite the incident in the elevator.

She replays two scenes in her mind. A comedy and a triumph as she smiles inwardly.

Lurching into the elevator after saying goodnight to Lorry, she’d put her clipboard on the walker’s seat and punched the button for her floor. As the elevator rose, she shifted her legs and knocked the clipboard to the floor. Automatically, she squatted down to pick it up and rediscovered she couldn’t stand back up. She gave in and sat on the floor. Someone will come.

The elevator reached her floor, and the door opened … and closed. She fought back her first responses, helplessness, frustration and anger and replaced them with a wicked grin, thinking this is going to look pretty strange to the next person getting on the elevator.

The elevator lunged upward. When the doors opened, a heavyset black woman stood above her, eyes wide. Immediately she blocked the door with her foot and asks, “Are you OK?”

Ilene had wanted to laugh at the thought that flashed through her mind: Of course I’m OK. I always ride elevators sprawled on the floor.

“I fell and I can’t get up. Can you help me stand?” Ilene said.

The rescuer kept her foot in the doorway as Ilene scooted around so the woman could lift her from under her arms. Halfway up, she grabbed the walker and stood on her own. The woman picked up the clipboard and handed it to Ilene. After thanking the woman profusely, Ilene left the elevator, hobbled back to her room, threw herself on the bed and sobbed. This confirmed her decision to stop leading workshops––so she would make this last one memorable.

The next day Ilene provoked an imposing former professional athlete, into admitting that his biggest fear was making mistakes, being wrong and hurting his clients. She insisted that he see his clients as capable of being as big or bigger than he is––after all, neither can see the other over the phone.

“You’ve got to believe that they can be a big as they want to be. That’s your job.”

Ilene smiles at the memory.

It was a good workshop to end on.

Suddenly, a longing pain, sharp and unexpected as a misdirected sewing needle, jabs Ilene. She so wants to be up on the rocks, making them laugh, helping them enjoy the beauty of life. She lets it linger as if she were sucking on the drop of blood from a fingertip. She buries her face in Tasha’s fur to blot the forming tears and takes a deep breath.

Feel the pain. Move on. Enjoy watching Nick in photographer mode, oblivious to everything as he works with our friends in the warm, fading light. Let go of feeling guilty about curtailing his freedom, his creativity—and let go of my own shattered dreams.

I choose to celebrate the moment. Celebrate each moment. Celebrate this moment.

She lifts her head. They’re returning to the Jeep. Only Nick notices the slight redness in her eyes. He arches an eyebrow in silence and she nods her head ever so slightly.

Ilene

Margarita returned to spend Thanksgiving with us. Her vibrant presence delighted me in ways Nick could not. Her bright, infectious laughter, so childlike, helped lift the disease’s cloud of doom. Her youthful optimism and musical interests reinvigorated my joy and laughter. We fed on each other’s quips about my disabilities and her experiences as a private investigator. Like Nick said in Hawaii last month, I felt that she was the daughter we never had. Over dinner, we explored the possibility of her moving to Colorado.

“They chose me,” Margarita said of her parents. “I appreciate that and all they gave me, but now I get to choose a family, and I choose you. I’ll to help you live while you fight ALS.”

“OK,” I said, “but you can’t make us, or me, the center of your life. You have to do things for your own growth, for your own self.”

Nick went to bed, while Margarita and I stayed up. I told her how much fun I’d had in Hawaii and wished I could go again.

“Let’s go,” she said. “Just the three of us. We would have a blast.”

Late the next morning, Nick emerged from his “dungeon” for breakfast. Afterwards I asked, “What do you think about going back to Hawaii, just the three of us?”

Margarita squirmed in her chair with excitement. “It would be so much fun!”

He looked up from the paper and shook his head. “Too soon for me, I get bored over there. Why don’t you two go?”

“Why not?” Margarita said, smiling broadly at me. “We can stop overnight at my house in L.A. going both ways so the trip won’t be so long or hard on you.”

I was disappointed by Nick’s response, even though I understood it. I paused at the thought. If I’m going to go, I need to do it soon. I don’t know how much longer I would be able to fly. A couple of months, maybe?

“How about January?”

Margarita clapped her hands and bounced in her chair. “Woo-hoo, let’s go. I love Hawaii.”

Her excitement made me feel like a teenager again.

After I told Margarita Nick still hadn’t found a scooter, she started looking online and found one. It was perfect, almost new. Nick made a ramp to get it in the Jeep and the first thing we did was splurge on some clothes at the Cherry Creek mall.

Now that I had the scooter, the braces that had made walking so grueling for the past nine months gradually disappeared. I saved my strength for standing and taking a few steps. I focused on what I could do, not what I couldn’tdo. My body might be getting defeated, but I was not—despite the tremors creeping up my legs.

That night in bed I listened to the wind rustle through the pines as a sliver of moon peeked through the windows. A year ago, I walked unaided. Yeah, I knew something was wrong; however, I didn’t have a diagnosis then. A year ago I looked forward to the future. My future, our future. What now, what can I look forward to?

Using the walker without my braces, I shuffled into my office, lit an incense stick, packed my pipe and took a couple of hits.

I stared down at my computer and cried softly. Gradually my gut clenched like a fist, and the tears were hot as anger rose and my heart pounded with incoherent rage. I hammered at the keyboard like I had slammed the pillow into the bed nearly a year ago:

ARRRRGGGGGH

It’s not fair!
I didn’t ask for a body that couldn’t move!!!
I asked for spirit to guide me.
I want to understand.
Why????
Is this necessary?
Is the universe that chaotic?
Is there a reason?
AAAAAAAARRRRRRRGGGGGHHHH

I closed my eyes, breathed deeply, quieted myself and listened for answers. There were no words. Then an odd … calming emanation rose within me. It wasn’t speaking to me, more like infusing me with concepts and sensations rather than words, but words or maybe paintings were the only way I could reveal the perceptions. I felt like I was being reminded of my asking for an acceleration of my spiritual path. Maybe it was my spirit guides suggesting I dwell less on the manner and timing of this transition and spend more time contemplating the learning I may find along this path. Maybe I need to accept that my soul is the driving force in my life, not my body.

I closed the computer and pushed the walker into the moonlit bedroom where Nick lay sleeping. Perhaps it is time for more meditation, more creative work, more celebration of life even as it ebbs from the body I’ve loved so long. Maybe.

Bane

Poetry, spirit guides, meditation, faugh! I have no reason, no rationale for choosing her. I merely exploited a weakness in her body. The only thing she will learn from me is loss and pain. As for her creativity, I will take that too when I seize her hands. I give her nothing to celebrate. I control her. Utterly.

Ilene

The oven timer beeped from the kitchen. I pushed back from my desk, shuffled to the kitchen to check the cookies and relieve my thirst. Glass in hand; I reached for the refrigerator door when a sneeze exploded from my chest. My feet flew out from under me and I dropped the glass as I fell and slid backwards across the polished oak floor. I was shocked but unhurt, as fear welled up and collided with the amusement in my mind. Do I cry or laugh over a simple bodily function that put me in danger? It’s pretty funny when my sneeze can knock me down and across the room.

Nick would have to take care of the broken glass when he came back from walking Tasha. I scooted away from the shards, grabbed the counter, and pulled myself up to stagger back to my desk. Laugh or cry? No. Neither. Write.

Tinkling fragile glass,
Shatters in slow motion
Onto the floor.
…more like a marionette,
dropped by her puppeteer,
limp, expressionless.
Who floats on whiffs …
fresh baked cookies.

Here I lie in a crumpled pile,
Vexed by my comfort with spaghetti limbs.
Laugh or cry, the choices call equally.

Caress me, bright night of the soul.
Warm the touch of icy fingers reaching across dimensions.
Let me know design’s perfection,
As my lovely design shatters …
On the edge of uncharted destinations.

“Shattered Destinations.” That would be a good title.

∞

The Kouzel Hawaiian vacation begins on October second. It is the first all-family gathering since Ilene’s childhood. She doesn’t say much about the loss of functions she experiences from week to week despite using the Rilutek her neurologist prescribed. She knows any activity done sooner beats than any activity later.

Ilene and Nick are the last to arrive at the condominium and after greetings are over, slather sun block on and venture outside. Without her braces, and supported by the walker, Ilene flips her functionless feet through the grass toward the beach. Leaving the walker on the lawn, and with Nick standing behind her, she clenches her jaw, clutches wooden handrails and takes three careful steps down to the sand. The surf churns sand and water only twenty yards away.

Stiffening her body with determination, Ilene tells Nick, “Don’t carry me. Just stand behind me and hold my hands.” She lets go of the handrail, reaches back, latches her hands in his, and locks her arms to stabilize herself. She lifts each thigh high enough to fling her wasted calves and floppy feet forward above the sand.

“Over there,” Ilene directs Lynn, who spreads the mats and towels over the sand. Ilene glances at the complex behind her and sees her mother and aunt cross the lawn with towels and mats. Soon the beach around her is a patchwork of towels and blankets .

Memories of herself as a Southern California beach girl, body surfing along the coast, float through her mind. With a practiced eye, she studies the two- to three-foot wave sets rolling into the steeply sloped beach. It shouldn’t be difficult to get out past the surf. That reef, about fifty yards out, knocks the power out of the incoming waves. Back when I could walk and run, it would have been an easy, graceful entry, even with gear.

She closes her eyes and pictures what she would have done so long ago. Take a half dozen running steps timed for a dive between the waves. Make four quick crawl strokes past the surf line, roll on my back, tread water, and slip on my fins. Pull the mask down, pop the snorkel in my mouth and off I go, face down, to explore the amazing world below.

She shakes her head. That was then. Now she just wants to swim.

“Let’s go in the water,” Ilene says to Nick and Lynn. “I can’t wait.”

“Do you want me to carry you down?” Nick asks.

“No. I can do it if you and Lynn help me walk out into the water.”

Ilene extricates herself from memories of athleticism, the graceful ease of movement and the perfection of independence. She knows she will not enter the water gracefully, so asks herself, what will I learn from this? Detach from the past. Celebrate this moment.

Braced on either side by Lynn and Nick, she makes her way down the steep slope into the water. The reef weakens the waves but the knee-high surge on the steep slope pulls at her legs and washes sand from under her feet. She can move her legs with her thighs, and she’s supported by her husband and sister. Still, the surging waters push her calves and feet around like seaweed.

“OK,” Nick says. “Everybody ready?”

Nick

As we inched out, the surge knocked Ilene off her feet, even with me and Lynn holding on to her. We tumbled back up the slope toward the beach. Frustrated, I swooped her up and dropped her out past the worst of the surge. She surprised me by how quickly she swam out to deeper, calmer water. I followed with her fins but she couldn’t get them on her floppy feet and float at the same time. I swam behind her and, pumping my legs frantically for several minutes, held her up enough to finally get both fins on her feet, adjust the mask and blow sea water out of the snorkel. The effort exhausted me and I paddled back to the beach to catch my breath.

Ilene

I wore Nick out and was glad he headed back to the beach. I started swimming out to the reef. Regrettably, even with the buoyancy of the water, my legs weakened and I couldn’t seem to float. I was tiring before I even got to my friends and family. I had overestimated my ability.

Lynn passed me a foam noodle .“This is great,” I told her as we paddled the rest of the way out to the reef. Despite the relief, the bitter taste of failure, loss, and dependence lingered in my mouth like salt. A year ago I would never have considered using a flotation device. But … that was last year. Let it go. Let it go like the foam disappearing into the sea. Be in the now.

We followed the brightly colored fish and occasional sea turtles. With the noodle’s support I felt almost normal for a time and celebrated the freedom of movement in the sea with my family.

When my body shivered from a surprising chill. I called to Lynn, “Let’s head back.”

Closer to shore, I saw that the tide had risen and the surf was heavier than before we went in. I didn’t think it would be too hard. Let the surf carry me in as far as possible, then Nick could help me stand up and walk out. I watched as he got up and swam out to meet me.

Nick

“Ready to come in?” I asked.

Ilene nodded and the two of us swam toward the surf line.

When her feet touched the sandy bottom, I tried to help her stand. Her fins, the steep angle of the beach, and the quickness of the waves pounding against the shelf all conspired against us. As she tried to stand, even with my help, a wave would knock her feet from under her and the two of us would tumble into the surf.

We laughed—at first.

It took us a half-dozen tries before we finally figured out that I had to carry her in my arms like a child and time my steps between the surge and backwash. I was wiped out once again.

“There’s gotta be an easier way,” I gasped as I set her down next to Milly.

Ilene

For the next half hour I dug sand out of my suit while Nick and Janet’s husband worked out a solution. Nick would carry me into the ocean with fins, face mask and noodle in place, and Robert would carry me out. The relatively unencumbered time I spent chasing fish and sea turtles around the reef was worth it. I released the old memories. Celebrate the present.

Margarita, Milly, Ilene, and Lynn in the background

That night, after the youngest and the oldest in the family had gone to bed, we gathered to celebrate Margarita’s birthday. We sang and toasted her, then I raised my glass and said, “Here’s to ALS, for bringing us together as a family to laugh, play and enjoy one another.”

***

The week flew by and everyone scattered to their homes. Nick and I took a red-eye to San Francisco that arrived at 2:30 in the morning. I’d planned to visit Elene in Santa Cruz before attending the Coaches Training Institute annual leadership conference. Fortunately, Nick’s long layover let him help me get my baggage and walker to the rental car.

He asked if I was OK to drive. I still hadn’t told him how difficult driving had become. I couldn’t surrender that freedom, not yet.

“It’s an automatic,” I reassured him. “It’ll be a lot easier than driving my car.” I checked my watch. “It’s four a.m. There won’t be any traffic to worry about.”

I took my time driving down Interstate 280 to highway 17. The traffic was light, and I kept my stronger left foot propped in front of the brake pedal and stayed alert to road conditions. I climbed Highway 17 from Los Gatos. Dawn broke behind me and warmed the trees with the comforting first glow of sunrise. As I crested the summit and glided down, the apricot shaded fog bank engulfing Santa Cruz started to lift and lose its color in the clear light of the rising sun. For a few seconds I celebrated the quiet beauty of dawn—at 55 miles per hour.

Although I missed walks in the mountains and on the seashore, Elene and I deepened our companionship. I enjoyed the playfulness of her two boys who, at eight and five, were beginning to grapple with life’s joys and frustrations—just as I might be leaving them behind.

Bane

The woman drives up the coast to Tiburon, refreshed by the stay with her friend. Her coaching community welcomes her. But ... as a psychotherapist she reads their subtle reactions. A slight widening of the eyes here. A furtive glance at the walker there. Some attempt to ignore it completely, just like she attempts to ignore me. She cannot admit to anyone that she is losing ground to me. She treats each compensation as if it is a victory, not the defeat it is. She will give in to me. I give her no choice in that.

The coaches like to hug. She clings to the walker with one hand. Then she holds them heart-to-heart. Yet not too tight—lest she lose her balance and need to cling to them for support.

It’s a dance, she lies to herself. She tells herself to play with her body differently. She shifts her balance from feet to hands, to the embrace and back again. It’s a subtle dance. Her struggle is hidden behind the ease with which she makes the transitions from the walker to the hug and back again. She imagines she’s in control.

I will end her smug self-satisfaction. She clings to a fantasy. A fantasy I will destroy.

Ilene

As the plane circled up over San Francisco Bay, I studied the scene below. Tears filled my eyes and my stomach churned. I won’t be able to do this next year. I have to let it go.

The next morning before I woke, I felt something else. It was that soundless, wordless voice I had heard before. More like a presence that said I needed a different kind of help.

At breakfast, I told Nick, “That’s my last leadership conference. I’m not going again.”

His head snapped toward me, surprise written on his face. “Are you sure? Why?”

I hadn’t told him about many of losses I’d experienced while traveling and leading workshops. He offered to travel with me and make that part easier for me. That wasn’t the real issue. It was my inability to lead workshops the way I needed to that clinched my decision.

“I can’t do the training right,” I said quietly.

“What do you mean? Just because you’re using your walker doesn’t mean you can’t teach. The participants come to learn what’s in your mind, heart and soul, not how you walk.”

“But I can’t move,” I wailed. Emotions I had stuffed during the trainings surged through my plaintive voice. “If I can’t move, I can’t be me. I can’t do it right.”

“But you have so much more to offer than moving perfectly.”

Angry tears filled my eyes. I can’t meet MY expectations. If I can’t beat ALS, how can I challenge others to go for their goals? How can I sit in front of a class and not do the job the way I know I could if I was healthy? The gap between what I want to do and what I can do is too great.

“But that’s who I am. My body communicates as much as I do—maybe more—and I can’t use it. Can’t you see that?”

“Can’t you see beyond that?” Nick asked evenly.

Blindsided, I shouted, “No!” and fought my way out of my chair. “No, I can’t.” I grabbed the walker and lurched to the bedroom. Tears blurred my sight and streamed down my face.

Nick followed me.

“Leave me alone! Just leave me alone!”

I sat on the bed waiting for him to leave.

He didn’t. He stood there, ran his fingers through his hair, folded his arms, then propped his chin in one hand, mulling over what to say.

“I know how much leading workshops means to you. I want to support you. I just don’t want you to give it up prematurely. It shouldn’t be a decision you later regret.”

“I know what I’m doing. Can’t you trust that?”

“What if we get a scooter so you can ride around the class? You won’t have to walk,”

“It’s not just doing the workshops. I want to get back to my art. I want to paint too. You of all people should understand that.”

He was silent for a long while. “Yes, I do. You should do it.”

Yes, I longed to make art again, and more than that, I yearned to be healthy again. I couldn’t admit my body was failing—fast. I needed a different focus that did not hit me in the face every time I wanted to do something and couldn’t. All I needed for coaching on the phone and my art was my arms and voice. I didn’t consider I would lose those too.

I glared at Nick through blurry, tear-filled eyes.

“Thank you,” I said, rimming the words with razors, cutting in every direction. “Thank you for letting me make up my own mind.”

“You’re welcome,” he snapped and stomped out of the room.

Only I knew the magnitude of the losses I had experienced over the past few months. I’d made up my mind. I would cancel all my upcoming workshops.

I hung my head and wept quietly. Let it go. Let it go.

Am I running away from something or toward something? The words echoed in my mind. I laughed bitterly and mumbled, “Shit, I’m not running anywhere. I can barely walk,”

Late in the evening I closed the door to my office. Nick was already asleep. I took a couple of hits from a joint and sat down to write—something, anything to release my feelings.

Creating

I promised to create my day.
I promised to do it and have completely forgotten.
No, not forgotten,
Overlooked
Stepped over.
I got real busy . . . with work:
Coaching,
Training,
Supervising,
Team-building.
Got pulled away from me
From my creative process,
Which is even more than …
Than these things I make more important.

The next day I reviewed the poem. It felt like pot-inspired gibberish. Still, I sensed something … something hidden behind the words as if I was reaching for something, or someone watching, waiting for me to understand. My spirit guides?

She insists she is not in-valid, that she is capable, but humiliations intrude in small, cruel ways.

Bane

“Margarita!” the woman shouts. She waves and rolls the walker toward her cousin emerging from the Denver airport’s arrival portal. The cousin’s mother died three months ago, and only then, did she learn she had been adopted. Everyone else, including the woman, knew the truth. The secret still angers and confuses the cousin.

Her eyes widen, then a big lopsided smile splits her face. She rushes toward the woman, who leans into her with a big hug.

Trudging back to the car, the woman again gives in to the weakness I inflict on her legs. “Would you mind driving?” she asks.

Margarita

I’d hidden my shock at seeing Ilene leaning on the walker. Like me, she had always been athletic and lively. As I drove toward their home, we shared memories of a time when I’d lived with her and Nick while I was at law school in San Diego. Despite a twenty-three-year difference in age, I had always felt a special closeness to Ilene and was delighted to visit now. She had always supported my interests and encouraged me to look inward, find the best me and bring it forth—she even liked my music! This would be a good respite from the betrayal I felt at the family withholding my true origins. Maybe she could teach me how to deal with it.

Ilene

I loved Margarita’s youthful heart, the way her long blond hair bounced vibrantly when she greeted me. Her physical energy was so much like mine––before my world imploded. Deeply wounded by the open secret of her adoption, resentment and anger boiled just below the surface, compounded by her inability to know her genetic history.

“I always knew something was different about me,” Margarita confessed as she drove. “Sometimes I thought I was adopted, but I was too scared to ask about it.”

I might not be able to heal myself yet, but I thought I might help her begin to heal over the next ten days. And, maybe, unlike Nick, she would share a hit or two from a joint with me. I had returned to smoking pot to lighten my mood and renew my energy, at least for short bursts. We talked incessantly, and her infectious joy reinforced me. She was eager to help with anything and I lightened up in her presence. I supported her exploring how to heal. It was a fair exchange. I admitted that I wished she was closer and could visit more often.

Margarita searched my face with an unspoken question.

“Don’t get me wrong,” I said. “Nick is so supportive—but serious, he’s like that Dog Star, Sirius.”

Margarita laughed. “Does he know you call him that?”

“Oh, yeah. We joke about that too. But you make jokes with me. He doesn’t very often. I’m the one who makes something funny, not him.”

*****

Over our last dinner Margarita asked, “Could I come stay with you guys? I don’t feel like I belong in L.A. anymore, I don’t know where I belong. And I want to help you.”

I had suspected her request was coming and had talked about it with Nick, and I worried about her reasons for volunteering to help. Margarita was wounded and casting about. Was she simply trying to escape or truly seeking herself? Would her helping care for me get in the way of her own growth? Certainly it would help me … and Nick. And I could support her finding her own sense of self. Nick deferred to my judgment with a glance.

“Yes …”

Before I could finish, Margarita clapped her hands together gleefully, fingers splayed and pulled back like a five-year-old.

“But promise me that you will work on yourself. This can’t be all about caring for me.”

Margarita leaned over and embraced me. “I will. I promise.”

Nick

A few days later, Ilene and I attended a “Healing Turning Point” conference in Sacramento for cancer survivors, along with her sister Janet and her friend Elene. Ilene hoped she could learn something that would help her fight the disease even as she still resisted seeing it as ALS. The conference was billed as open to anyone with a life-threatening disease. However, the focus was entirely on cancers––completely irrelevant to Ilene’s condition. Nonetheless, I was determined to support everything she wanted to do if it gave her any boost to live fully.

In a small group session for sharing how people were coping with their disease, Ilene revealed her diagnosis. She had to describe it as several women did not know about ALS.

“It is an orphan disease,” Ilene said. “Only about five thousand cases a year, so it doesn’t attract much research or public attention.”

Ilene turned to me, pain written across her face. I took her hand and nodded my support.

“If only there was this kind of attention for ALS,” she continued. “Maybe something would be done; maybe there would be progress. But our numbers are too small for drug companies or the government or the media to be interested.” Rivulets flowed over her cheeks past the corners of her mouth and onto her chin. “This disease is insignificant to them. I’m insignificant to them.”

I put my arm around her as tears filled my eyes.

I whispered in her ear as I inhaled the sweet aroma of her hair. “That’s their loss, no, the world’s loss, because you are not insignificant. Especially to me.”

“I know I can beat this,” she told me yet again. “All I have to do is find the key.”

There was one memorable moment for both of us. Doctor Jean Shinoda Bolen paraphrased Pierre Teilhard de Chardin: “Perhaps we are spiritual beings on a human journey.” One sentence made the whole conference worthwhile. It became our key to the future.

“That gives us a completely different way to look at the disease,” I whispered in her ear.

Ilene

The sentence, and Nick’s observation, vibrated deep inside me, almost as if someone had plucked a chord on distant strings. I sensed a special truth, a truth that could not be defined yet could be felt, could be known. It was a truth about me, and us. It reassured my soul.

It was as if a voice or voices—maybe my spirit guides?—were saying:

“You are correct. Life’s energy exists in more than the physical realm. What you think of as ‘life’ is far more narrow and limited than you know.”

My mind raced faster than I could speak. “Perhaps I’m not supposed to have a chance,” I blurted. “What if there is another message, another learning for me in this disease? What if I’m supposed to learn something from this on a spiritual level? What if, for some unknowable reason, I chose this disease? What if, in creating the successes I have, it is time for me to understand interdependence on a deeper level so I can be better prepared for something between lives or in my next life? What if there is something I have to do between lives that requires this experience in the physical world?”

Nick

I pondered her questions before responding. “All of that may be, my love. We have no way of knowing. Something about it just feels right to me too. But I can’t look at the disease as a teacher the way you suggest. It’s a brutal burglar in the night, no, it’s a sadistic murderer that takes your life tiny bit by tiny inevitable bit. It broke the window to our dreams and is stealing them away. It’s too soon, love. Too soon.”

I turned away from her to blink back tears before they could show.

Bane

First the woman grasped at the straws of Lyme disease, then “mind over matter.” Now she strains to search some mythical dimension for a reason to explain my presence. The physical world is all there is. Her “what ifs,” her fantasies, have no substance or reality.

Ilene

Denver, heading to Minneapolis for another workshop. Six weeks since Toronto. I reached the bottom of the jet way for my flight and squatted to collapse put my walker in the bag Nick had had made. When I finished, I started to stand—and failed. Disbelief and fear surged through me. I struggled with all my might. Even using my arms to help, I could not push myself out of the squat, and the rest of the passengers had boarded. Finally, in desperation and inner panic, I grimaced up at a flight attendant standing in the aircraft’s doorway.

“Are you OK?” she asked as she approached and stood over me.

My pride broke. “I can’t get up. I need help.” I detested the whimper in my voice.

I felt my face heat up from my hopeless attempts, my embarrassment, my incompetence. I wanted to cry and curse my frustration with my helplessness. Like a toddler who has fallen and waits for her mother’s help, I fastened my eyes on the stewardess. I was afraid that if she helped me from the side, it might throw me off balance because of the braces.

“Can you stand behind me and lift me that way?” I pleaded.

Finally, standing like a normal human being, I thanked her profusely and teetered down the aisle to my seat. I consoled myself with the notion that at least I could direct a helper. Still, I asked for a wheelchair before arriving in Minneapolis.

No more shuttles. I took a cab to the hotel. And no more out-of-town workshops, I could see it coming. To save my strength, my co-leader and I had all our meals in the hotel.

On the flight home, in the darkening skies outside the window, as the aircraft lost its race with the sun, I wiped tears from my face as I grieved leading my last out-of-town workshop. I still wasn’t ready to tell Nick about this new embarrassment.

***

Coaching from the comfort and privacy of home allowed me to continue to work, write and create as I chose. My clients all came to me, either on the phone or in person. I could always talk. I could contribute from afar.

I worried that Nick did not have any support in his increasingly demanding role of caregiver. One evening as we were in the bathroom getting ready for bed, I questioned him.

“It’s simple. Taking care of you is my job now,” he answered.

It hurt to hear him talk like that. I didn’t want to be anyone’s job, least of all his.

“No, it’s not,” I retorted. Was I mad, sad or guilty? I didn’t know. “We’re supposed to be partners sharing our lives, not one dependent on the other for everything.”

“You’ll never be dependent on me for everything,” he said, “And…

“Damn right I won’t. I’ll leave long before then,” I said.

My eyes started tearing up with anger and determination as I glared at him while holding onto the bathroom vanity.

“I won’t let myself become an invalid. You know what that means, in-valid. No validity. I won’t let that happen to me, to you.”

I broke down, crying full out now, my eyes and nose flowing like rivers.

He handed me a tissue. I sat on the walker, swiveled to face away from him, blew my nose and stared at the floor. He knelt down to look up into my eyes, which must have been bloodshot.

“You will never be an invalid to me, sweetie. I know you better than that. You will always have something to give … all the way to the end.” He handed me another tissue. The softness in his voice would have comforted me if I could have heard it. I was too lost in my grief. My losses.

“But this isn’t how it is supposed to be,” I blubbered through the tissue. “We were supposed to be skiing into our seventies.”

“I know, babe, I know.” He stood and looked out the windows at the moonlit pines, ran his fingers through his hair and clutched the back of his neck. When he turned back and knelt down again, I could see tears drying in his eyes. Tears he didn’t want me to see.

“I hate it that you can’t work on your friendship book project. It is such an important project. I’ve stopped you from doing it.”

“No, it’s just delayed. Besides,” he pivoted, “now I’m writing this fantasy novel. It never would have happened if you weren’t sick.”

I dried my eyes and blew my nose. I was over feeling guilty. I was lucky to have him; to have his love and support; to have his adaptability. I just hated this weakness invading my body.

Nick

During the cruise a few months back, I’d gotten to know Ilene’s friends Bill and Marilyn beyond the surface level. So I was more than glad when they came for a three-day visit. Marilyn’s raucous off-color humor triggered Ilene’s quick repartee and lightened everything up in ways I rarely could. Bill too relied on their humor.

Bill and I made time to be together by ourselves. He had lost his first wife to cancer a dozen years before, and we hadn’t talked about that during the cruise. He was a large, powerful man, a wrestler in high school and college and a retired English teacher and wrestling coach. On one occasion we sat in my office sharing our experiences.

“I didn’t cry during the entire time of my wife’s illness,” he confessed.

“I cry sometimes—when I’m alone,” I admitted as I slid my writing pad aside.

“Good for you. I wished later I could have cried then.”

I paused, silently contemplating the pen in my hand until I looked up and studied Bill’s face. “She’s the one who is dying, not me. There’ll be time enough for grief later. Not now.”

“Do you ever need to get away?” he asked.

“No. Not physically. But I do when I write. I guess that’s my escape. And, unlike working in the darkroom, writing is easy to break away from whenever she needs me.”

Bane

Like the woman, the husband cannot escape my clutch. He feels the effects of my conquest—differently, of course—and he feels it to the core of his being. He adapts to the immediate effects of my victories. He cannot—or will not—look to the future. I doom them both to failure. Everyone falls before me in the end. There are no keys to my prison, no tunnels that allow either of them to escape.

Ilene

It had been a year since I last led a workshop in Toronto. Back when I walked without thinking about it; when I didn’t need a walker. Now I calculated every move. Like now: One-way streets forced the shuttle driver to park on a side street 30 yards away from the hotel entrance. He deposited my walker and two rolling bags on the sidewalk and drove away, leaving me alone in the dimly lit street.

At least it wasn’t Atlanta. I put my rolling briefcase on the walker’s seat, balanced myself between the suitcase handle and walker and flung my legs toward the entrance foyer. There, I confronted a flight of steps to the main floor and felt my chest collapse. There was no way.

Finally a bellman walked by.

“How do I get up there?” I shouted.

He pointed to a cage to the left of the stairs. “There’s the handicapped elevator.”

“OK,” I said. “Come take my bags and I’ll meet you back upstairs.”

“Oh, no,” he said as he trotted down the stairs. “I must operate the lift.” He whipped out a key from his pocket and inserted it into the lift’s gate. “Wrong key,” he said and left. My legs were weakening when he returned with a woman who used the opportunity to train him in how to run the lift. Somehow they shoehorned me, the walker and luggage onto the lift. It stuttered upward. My gut wrenched at my dependency on others for what used to be simple tasks.

Even though I began the workshop by explaining ALS forced me to use the walker, I still didn’t believe it. I took stock of my situation as I lay in bed that night. Everything I want to do is taking longer and is harder to do. How long? How long can I keep leading workshops? My independence, like my life, is slipping through my fingers, like the tears sliding down my face.

I brushed the tears away. I would find another cause for my condition.

Bane

The following weekend the woman’s friend flies in from Santa Cruz. Ten months have elapsed since she urged the woman to see a doctor. Ten months of enduring my defilement.

The woman drives squeezed in close to the steering wheel. She scrutinizes the road before her, alert to any possibility of danger. She still pushes the pedals adequately. I force her to cheat. She rests her left foot lightly on the clutch. Sliding her hand under her thigh, she helps her leg move between the accelerator and the brake pedal. Sometimes she slips her left foot over the brake pedal when she needs to slow down more quickly than just easing off the accelerator. Stopping in a hurry is problematic. She no longer drives in a state of relaxed alertness.

Pulling up outside the airport terminal, she waves excitedly at her friend standing on the curb. She pulls her legs out of the car and, leaning on the car for balance, hikes around to the passenger side to give her friend a welcoming hug.

“Elene, can you drive us home?” she asks. “It’s getting kind of hard for me.”

The friend’s eyebrows arch ever so briefly before agreeing to the request

The woman will not take the same chance driving with a passenger as she will with herself. She is not ready to tell the husband her difficulties with driving. She won’t relinquish this bit of freedom. Yet.

At home, the two women, like ancient sorceresses, use symbols and metaphors to tease out hidden feelings. They meditate, cast rune stones, do intuitive readings from tarot decks, and create scenes in the sand tray using figures from the woman’s collection. They attempt to explore the meaning of the woman’s life and my presence in it.

The woman draws images of me on paper. She creates visual barriers around the images in a vain attempt to isolate me. The two women make a life mask of the woman’s face from wet cloth stiffened by starch. But the gray and black paint the woman applies to the mask betrays her hidden fear that it is her death mask. It is.

When the friend suggests the woman contact an acquaintance who has had ALS for twenty-five years, the woman’s heart surges, then recedes.

“I don’t know, Elene, I think there is a lesson for me if this is ALS. If I can figure out the lesson, maybe I can stop it.”

Superstitious images and symbols have no effect on me. Even the woman’s mother knows this. I am not a lesson, Ido not teach. I annihilate. I destroy the spirit.

Milly

The last time I visited my Ilene and Nick, she was alive with energy and excitement about their beautiful new home. Only a year ago. We had had such a great time, going to a biker rally in Fairplay and traipsing through an art fair. This visit was far different. I wanted to do everything I could to help out. I had been an Army nurse in World War II. I had lost my husband to brain cancer, so I knew a lot about disease and dying.

But this was my oldest daughter.

Ilene was creating art with a passion I had not seen since she was young and vibrant. Not that she wasn’t still vibrant, just not her body. I helped them move her art supplies, easel and table down to Nick’s digital studio so she could create art when the chairlift was installed. We had fun workoing together to complete the drawer she had started featuring my youngest daughter, Lynn.

Doing something together made me feel useful even though she refused to talk about the disease; that awful disease I wished had struck me instead of her. Our work gave us a chance to reminisce about her childhood. The only future we talked about was my plan to take the entire Kouzel family on a Hawaiian vacation in a couple of months—a vacation I hoped she would be able to manage while she was still mobile enough to get to the beach and swim if she chose.

The evening before I left, the three of us relaxed in the hot tub. I couldn’t stay silent any longer. “How are you are you coping with the disease?”

“I don’t think it’s ALS, Mom. I’m sure it’s something else. I just haven’t figured it out yet.”

“But how can you deny it? All the symptoms are there,” I said.

“I just know it’s something else. I don’t want to talk about it anymore.” Her tone was brusque and defiant. I probably should have stopped there. I knew my daughter, though, and wanted to help her face reality. “How can you fight it?” I persisted.

“With hope,” she spat. “I have to have hope. That’s how. And I don’t want to have to defend myself. Nick, will you help me up?”

I watched in silent disappointment as he lifted her out of the tub, helped her stand, dried her off and wrapped the towel around her.

“I’ll be back in a few,” he said over his shoulder as he carried her upstairs

He returned and slipped back into the tub.

“She’s so much like her father,” I told him. “He never admitted his brain cancer was fatal. He fought it all the way to the end. He thought if he admitted it was fatal, he was giving in to it.”

“I don’t think it’s exactly like that with Ilene. She’s fighting it, but there is something different too. I’m not sure what it is, but there is a difference. It’s spiritual,” Nick said.

“I guess. I wish I could take it from her. I’m an old lady, I don’t need to live much longer.”

The timer ended. The bubbles stopped popping. In the hushed, comforting warmth of the water, we gazed wordlessly beyond the pine tops into the silent night and soaked in the enormity of the quiet light of the galaxy’s brilliant stars and wondered, lost in our thoughts.

Nick

The chairlift track arrived and I managed to get the track bolted to the stairs that day. Unfortunately the chair was too heavy for me to fit on the track. I’d have to take it apart and reassemble it on the track. Frustrated, I gave up at dinner time and left it to finish the next day.

Ilene

By noon the next day, after much cursing and grunting, Nick finished the installation and invited me to take the first ride. I had to get down two steps from the main floor to the landing at the top of the staircase. I clutched the handrail with one hand, took two steps down, reached for the armrest with my other hand and twisted my body around to execute a controlled fall onto the chair. Smiling up at Nick, I pressed the switch on the armrest. The motor ground to life and carried me down to the basement floor.

He followed me down the stairs. “It’s not pretty, but it works,” he said.

I heard his pride. “Yes it does,” I replied, grateful that he hadn’t hurt himself. Brackets bolted through the carpeted steps held the track in place and the chair blocked the staircase at both ends. “Good job,” I said. “But how are you going to get around it at the top and bottom?”

“Get off the chair a sec.,” he said. He showed me how the chair and footrest were hinged to swing up and out of the way.

“It’s workable,” I said, even as part of me silently screamed. This shouldn’t be happening. We’re destroying our dream home because of me. I scowled at the wide grey metal track ascending the stairs like a centipede. It was nearly half the width of the stairwell. I wrapped an arm around Nick’s waist and peered up at him. “I’m sorry, honey.”

He scrunched his face. “What for?”

“I’m sorry you have to work so hard to make this happen. I’m sorry you had to drill into the steps and ruin the stairs. I’m sorry we have to have this ugly thing in our beautiful house.” Tears welled up in my eyes and dribbled down my cheeks. “I’m sorry …”

He cut me off. “Don’t worry about it. I’m happy with whatever works for us. It’s no biggie. A small piece of carpet will fix the staircase when we no longer need the chairlift.”

I peeked up at him to see if his face matched his words. They did. Still, his eyes clouded with tears too. He’d said “we,” but I wondered if he meant “I.”

Bane

The husband pulls away, gathers his tools and starts cleaning up. The woman thinks he feels the same hostility toward the chairlift as she. He doesn’t.

He takes things a day at a time. He’s cursing himself for uttering his last sentence. He didn’t want to think about replacing the carpet at some future date. Not yet. Not ever.

As he puts his tools away, dark clouds gather outside and thunder rolls through the air, promising rain that does not fall.

I thrust further into her body, promising only more devastation.

Looking back, on how fiercely Ilene protected her belief that this was not ALS, I see that it was her armor. It allowed her to keep teaching, keep driving, keep imagining there was still another explanation.

This chapter invites you into a shifting chorus: medical authority, inner resolve, spiritual conviction, and the cold certainty of physical decline. As Ilene seeks coherence and purpose in what is happening to her, I struggle to hold my ground as witness—unwilling to grant the illness any claim to wisdom, even as it tightens its grip.

Bane

July 2nd. The woman and husband meet with the university neurologist. She continues her useless fight to live on her own terms. She can’t tell if the drug he prescribed restrains my conquest. No one can. She must hold the husband’s arm, or whatever is handy––for balance. She leans on them to stand and walk. Protesting twitches signal the added strain on her nerves. Her thighs still obey her demands. However, she feels her calves yielding to my enervating grasp.

The neurologist sits down in front of her, ebullient as usual. The woman marvels at his joyful presence in the face of constant defeat and the loss of patient after patient.

“How do you do it?” she asks, “how do stay so happy about your work when you can’t make a difference in someone’s life?”

His eyes dance, bright behind the wire-rimmed spectacles. He purses his lips before speaking. “It’s not the disease that makes the difference,” he says. “It’s patients like you who keep finding ways to live their lives fully that make me happy. You are doing the work. Anything I can do to help you succeed is small potatoes compared to that.”

Oddly, the honesty of his defeat comforts the woman.

He performs the ritual muscle tests. Her torso and arms and push and pull with strength. I’ve subjugated her legs from the knees down to my will. I won’t let her legs obey her mind. Hard as she tries, her right leg, the beachhead of my attack, does not have the power it had on her last visit three months ago. The doctor assures her she is doing fine. But she knows she is ceding territory to me. She doesn’t suspect that his “doing fine” refers to her emotional state. She manages her response to my march well.

I will destroy that confidence too.

Ilene

While not comfortable, walking in my braces had become almost automatic. I lifted my hip higher and used my thigh to flip the lower leg forward. I ignored the ache grinding my hips. I parked the car with only a few minutes to spare to get inside the post office and mail my gift.

Those days I had to hold the car door for balance and push the backrest to get out. I grabbed the package and “rushed” toward the post office. I didn’t scan the pavement below my feet. When I hiked my right hip, either the muscles did not respond as quickly as I expected or I wasn’t paying attention. My right shoe was fractionally lower to the ground as I swung it forward. Just low enough to catch a crack in the pavement outside the post office.

The stumble sent me sprawling forward. The package flew out of my hand as I reached out to block my fall. Despite catching most of my weight with my hands, my right knee crunched to the asphalt and I cried out.

A man asked if I was OK and extended his hand to help me up. My jeans concealed the braces that kept me from getting up the way a normal person would.

“I’m fine,” I said, mortified at the fall and having to push myself, butt first, from the ground. I got back up on my own.

He picked up the package and handed it to me, a question written on his face. I chose not to answer. I felt heat in my face. Was it embarrassment at falling or from struggling to stand?

“Thanks” was all I could think to say.

My knee throbbed. Still, I walked on my own—carefully, and limped.

After mailing the package, I sat in the car fighting the turmoil in my belly pushing me toward tears. I envisioned the fall from a place of detached curiosity. I didn’t want to admit I had lost something. Again. I fell because I wasn’t “in the moment.” I’d been focused on the future. Now I had a limp to add to my lurch to remind me to live in the present––mindfully.

∞

Ilene and Nick survey the medical supply store. Throughout June she had felt her legs weakening and found it harder to walk a hundred yards unassisted. By mid-July that distance was cut down to maybe fifty yards. The ache in her right knee constantly reminds her to be vigilant.

Avoiding what the wheelchairs threaten, she focuses her attention on her immediate need––a walker to support her mobility. She fills the defeat she feels with the promise of extended independence. She picks one she calls sporty with its metallic red paint, large wheels, bicycle-style hand brakes and flip-down seat.

She’s to leave for Minneapolis in three days, and she frets over how to keep the new walker from unfolding or getting damaged in airports. Nick devises a system of Velcro straps and she does a practice run, using the straps to secure the walker.

At the airport, she navigates the handicapped security check on her own and feels independent again until she gets to the bottom of the jetway.

Her practice folding and securing the walker seems like a year ago. She fumbles with the straps and waves off flight attendants and passengers who offer help. Half the passengers board the plane before she gets the last strap wrapped around the frame. She leans on the frame to push herself up to a standing position. The co-pilot sees her struggle and offers to help.

“Could you make sure the baggage handler carries this down the stairs instead of using the luggage slide?” Ilene asks.

“Don’t worry,” he replies, “I’ll take it myself.”

Surprise and gratitude fills her heart and tears start to form in her eyes. “Thank you so much. This is the first time I’ve had to take a walker,” she says.

He nods his head and carefully lifts the walker.

Ilene watches him go down the steps to the tarmac. Then, steadying herself with the handle of her rolling overnight bag, she boards the plane, and lets the warmth of the co-pilot’s unexpected kindness fill her chest as she lurches down the aisle.

On exiting the plane in Minneapolis, she finds the walker at the door—scratched. Damn, only three days old and it’s dinged up. She undoes the Velcro, straps her overnight bag to the seat, and toddles toward baggage claim.

I don’t need the wheelchair. I can move on own.

She gets her bag and allows herself a satisfied smile at another little victory as she hip-hikes her way to the cab line. She doesn’t even ask a bellman to take her suitcase to her room.

During the workshop, she navigates the walker through the seated students more easily than she imagined. Leaning on the walker relieves her legs of some of her body’s weight, making her lurch less pronounced. The built-in seat allows her to sit and not loom over the students. Self-satisfaction pushes the loss of gracefulness to the recesses of her mind. Mostly.

On returning home, she uses the walker around the house and on trips down the mountain to Denver. She tells Nick it’s a bit strange to drive fifty miles to Denver for a meeting, then wrestle the walker out of the trunk. She’ll keep doing it herself. Until…she doesn’t think about that.

Bane

For several months, the woman has thrown laundry—and anything else unbreakable—down the stairs. The laundry bags almost always make it to the bottom. Often loose articles fall only part way down the stairs. She can’t carry anything up or down the stairs.

Prideful, she refuses to limit her chores because of me. Her tenacity deceives her. Her sense of empowerment deceives her. She doesn’t tell the husband how she compensates. When something can’t be thrown, she sits on the step and uses her arms to bump down or haul her butt up, advancing the items a couple of steps ahead of her. She fears I’m closing in on her. She’s right.

Even so, she counts each trip as a victory of mind over matter; will over surrender, independence over dependence.

I’m destroying her with each trip, bit by bit.

Nick

Ilene always enjoyed the buoyancy of the hot tub, and though she was still tired from the Minneapolis trip, I thought it would help her sleep better. She resisted at first, then confessed how she’d been going up and down the stairs on her butt. I hid my dread at what that meant behind a grin and said I’d carry her down. She worried about me stressing my right arm that still hadn’t healed properly from the accident ten months ago. That’s when she first asked about getting a chairlift.

I surveyed the carpet. “Yeah, I know, I’ve been researching them on the Internet. Those things are expensive. And hard to find. I’ve been trying eBay, too.”

Ilene suggested I try the Muscular Dystrophy Association and I contacted them the next day. They knew of a chairlift that was available about a hundred miles away at a shop in Fort Collins. The shop told me that the track was only six feet long. I had to purchase two eight-foot sections of track to make it fit the stairwell and wait a month for it to arrive.

Ilene resigned herself to another month of awkward climbs and descents. At least she knew that a solution was on the way.

Bane

Both she and the husband think only of the immediate problem I present. They do not plan for what I will do over the course of my march. Their “one step at a time” approach mires them in the present. Instead of a chairlift for her to climb in and out of, they should find a wheelchair lift. They avoid thinking that far into the future.

A future I alone control.

*****

By the end of this chapter, Ilene’s conviction felt steadier than the ground beneath. Her clarity gave her strength. I could see how much it mattered to her to frame what was happening as purposeful rather than arbitrary. I wanted to protect that strength without surrendering my own sense of caution. Rather than resist her beliefs, I tried to find a way to stand beside them without letting them redefine what I understood the disease to be.

There are moments when old desires and aspirations reassert themselves and when loss requires acknowledgement, despite determined disbelief.

Ilene

Like the long descent into Denver, I came down from the high of our vacation slowly. I had clients to work with but the first of my two June workshops got canceled. The sudden hole in my schedule allowed me to think deeply about my life and what I wanted for the future. I made lists of things I loved doing and wanted to do, things I didn’t want to do, as Tasha slept on the floor behind me and the cats curled up on the loveseat. The lists were just do’s and don’ts. There wasn’t any feeling in them, so I tried a poem instead:

I love being in my body,

Running, dancing, jumping, climbing, hiking, skiing, skydiving.

Has my love for my body taken me away from consciously creating?

Doesn’t have to.

I can break that connection.

Between activity and sitting still, writing.

No, No.

Stop making myself wrong.

I did both.

But I wasn’t into creativity then.

During my morning meditations I heard an unwelcome worried voice somewhere inside me. It told me that if I didn’t find another cause for these symptoms, or a nontraditional cure, my tomorrows were few. I listened to the voice and told myself, lead only one class per month from now on. It reminded me to make time for art while searching for another cause…or cure.

The Mazda smoothed the washboard dirt road through the forest and scattered houses as I drove to Denver for art supplies. I loved driving this car—especially now. My braces were hidden from everyone. I was equal to anyone else on the road. The car embodied my true self: quick, independent, and responsive. It offset my diminished physical capacity. It maintained my independence, my little victory—but like all my victories, even little ones, there was a cost.

I had to move the seat forward as far as possible to get my rigid feet at a decent angle to operate the accelerator, brake and clutch from the low car seat. I felt like a little old lady peering over the top of the steering wheel and holding on for dear life. I was hyperconscious of the traffic around me and tried to anticipate what other vehicles might do and how I would react.

When I returned to my upstairs studio, I caressed paintbrushes I’d seldom used since college. Touching and holding them reminded me of easier, more optimistic times. They felt as comfortable and solid as old friends in my hands. I started where I’d left off so many years ago, painting abstractions. I completed a three paintings over the next few days.

But when I stepped back and examined them, and my feelings, there wasn’t enough emotion on the canvas, no connection to reality, nothing grounding. They were like me, floating in a sea of nothingness. I wanted—needed—something more real, more concrete and physical; something of this world, this world I felt in danger of losing.

∞

Ilene grips the handrail with one hand and braces herself against the stairwell wall with the other. Like a puppeteer yanking a marionette’s knee, she jerks each leg down to the next step to get to the bottom floor of the house. Each step sends a jolt from her stiffened legs up her spine. She wonders if it’s time to find a chair lift to the bottom floor … which includes the garage, darkroom, workshop, laundry room, Nick’s photo studio and the dark, wood-paneled office she christened his “Dungeon.”

Narrow floor-to-ceiling windows line the photo studio, welcoming June’s bright light from the south, east and west. Ilene gazes through one open window to the scattered wildflowers, evergreens and mountains outside. She calls it the sunroom even when Nick has closed the blinds so he can work with his digital photographs on the computer.

She opens all the blinds and summer’s sunlight floods the room. The rays warm her arms and face before she turns to see how the light falls and wraps shadows around objects in the room. The energy lifts her spirit with its light and openness to nature. If worse comes to worst, she could move her upstairs studio down here—if the stairwell would accommodate a chairlift.

For now though, she is curious about using Photoshop as an alternative to painting and closes the blinds to use her husband’s computer.

She starts the computer and finds one of the pictures she made of her youngest sister during their “sister’s retreat” in February. Clad in a white bathrobe, Lynn stands with arms outstretched, balancing herself on a low wall and profiled against a light stucco background. Falling snowflakes streak around her. Massage oil coats her dark hair and her face is free of makeup.

Ilene manipulates the photograph on the computer, not quite sure what she wants to do. When she removes all the color, she finds what she’s looking for. Unadorned by color or makeup, an essential inner essence radiates from her sister. It takes days before Ilene feels satisfied with the total image and asks Nick to make a print. It is a start, she thinks, now what?

The next day she wobbles into her husband’s workshop. Underneath the power saw she spots a dusty shallow desk drawer about the size of a kitchen sink.

She takes the drawer into the photo studio, lays Lynn’s picture inside and studies it, waiting for something to form in her mind. Lynn, she thinks, is like delicate lingerie protected inside a dresser. The drawer is a metaphor. Inside the drawer she is the unadorned woman hidden from view. The front and sides of the drawer are what she projects to the world.

Ilene lays the drawer and photograph down and clambers up the stairs to her office. Examining her collection of sand tray therapy figures, she’s drawn to symbols representing her sister—a perfume bottle, fanciful fish, goddess figurines, and jewels. Ilene stiff-walks into the bathroom and gathers unused makeup brushes and trays. She places everything in a grocery bag, slides it over her wrist, and works her way back downstairs.

As she plays with placing the items in and around the drawer, her mind leaps to creative possibilities for the future. I could create a whole series of drawers for people; perhaps have a show of my own someday—at last. Perhaps I could even make some money by creating personalized drawers for people. Perhaps…

Her thigh twitches. She pushes it out of her mind. One step at a time she tells herself.

Clearing a space on one of Nick’s tables, she starts to work … and play.

By the time she has to leave for a workshop in Atlanta at the end of June, she has constructed the basic ideas for Lynn’s drawer and contemplates a second drawer, one of herself. This is satisfying. It steadies me. I can face whatever comes next.

Bane

The woman does not yet recognize the new vulnerabilities I inflict upon her. Again, she faces the rigor of travel. Conceding to me, she resolves to save her energy for the workshop. She submits to wheelchair assistance at both Denver and Atlanta. In Atlanta, however, she rashly follows company policy to take a train to a nearby station, then a cab. Despite the late hour, she boards the train. She yanks her two rolling bags across the gap and wobbles to an open seat.

Not wanting to be seen as an easy target for a mugging, she sits erect and alert. She tracks everyone who boards on the train and notes their position and behavior.

Along with a handful of passengers, she departs the train. The woman uses the handles of her bags for balance. She hikes her hips as unobtrusively as possible. As confidently as the braces permit, she totters side to side toward the exit. The other departing passengers quickly outdistance her despite her best efforts to stay close.

Beads of sweat dribble in her armpit—not only from the humidity.

There’s nobody near me, so I have to look capable. Stand up straight. Walk confidently. Don’t appear as weak or as helpless as I am. Shit, I can’t run two steps without falling if I saw a potential attacker. Never again.

She reaches the exit from the station—alone. Under the harsh halogen streetlight she reaches for her cell phone only to discover it’s dead. She waits, exposed and vulnerable, for a cab to appear.

Shifting her weight from foot to foot, she scrutinizes each passing car from the corner of her eye. She tries to appear as if someone is going to pick her up any second.

At last an empty cab pulls up and she lets her shoulders relax. But her self-confidence is shaken. From now on, she swears to take a cab from the airport.

Yes, she adjusts. Because I force her to. Her “little victories” merely hide her retreats.

∞

“I’ve been diagnosed with ALS, Lou Gehrig’s Disease,” Ilene says when she introduces herself to the workshop participants. The normal light rustle accompanying the start of a class dies suddenly.

“Don’t feel sorry for me,” she tells them. “I am the lucky one among us. All of us are going to die. But we don’t know when or how. I am conscious my death will be sooner, not later. There is no false sense of endlessness to my life. My days are closely numbered. I am more aware of having a clear purpose for the rest of my life. Can you say that?”

Her eyes flicker over the participants. Some appear expectant, waiting for her next words. Others glance down or away from her. Few hold her gaze.

“This is a gift for me. Not a welcome gift to be sure, but a gift to be understood. No, I can’t say I understand this gift yet. But I must open it. Inside, I find that the gift makes me aware of the ecstatic in the present moment; to want to make things count; to hear and follow my own truth as never before; to waste no time with bullshit; to kill the gremlins in the back of my mind that gnaw away at my desires. It takes courage to be yourself. To reach for your own fulfillment is a courageous act.

“You can be sure leading this Fulfillment course is what I want to do this weekend. And you can count on me being real with you.”

She pauses for a moment to let the impact of her words settle within the participants. Then, when the hushed tension feels just right, she says, “Now let’s have some fun in finding your fulfillment and how you can assist your clients in discovering what fulfills them.”

*****

By the end of this month, Ilene no longer pretended that adjusting to a loss would hold. The losses were too visible. She acknowledged the diagnosis in public but privately fought it for months to come. Maybe, just maybe, that was her first tentative step toward acceptance.

Ilene

Nick slept in the seat next to me as I squirmed, trying to get comfortable on the flight. Ever since art school I had dreamed to see the art I studied at Berkeley. When Nick added the Mediterranean cruise and our friends Marilyn and Bill accepted the invitation to join us, everything promised to be magical. I just had to will my body to cooperate—if I could.

On last month’s flight, I took my braces off and walked to the bathroom while holding onto the seat backs. Now I had to put the braces on to make the very same trip. Every month brings a new loss. I’m losing this fight I’ve got to win. I’ve got to find the real reason for this illness. Although, for the next three weeks I’m going to set it aside…somehow.

I stared out the window at the broad orange horizon as the sun promised to ascend once more. I felt so estranged from my body. I seemed to reside somewhere else, outside of myself, objectively watching my struggle to cope with each new restriction the disease, whatever it was, inflicted on me. I couldn’t waste time lamenting each a new loss. It was what it was. I accepted the loss as a new obstacle to overcome and continued my search for another cause. More than anything, I promised myself to make the most of each moment that came.

∞

Ilene closes her eyes to meditate to the tune of the droning plane. Inwardly she chants a mantra of acceptance and gratitude to clear her mind for the adventure ahead. She swears not to let anything interfere with the joy she hopes for. Her body cannot fight the disease, so she will fight to contain it and celebrate the vacation. So she thinks as she drifts into fitful sleep.

As Nick unloads the suitcases—and a wheelchair—from the cab, Ilene scans the Roman hotel. It is so skinny it looks like a slice of ham in a sandwich. However, the location, next to the Vatican wall, and only a few blocks from the entrance, makes up for the inconvenience.

Hungry for something beyond airport food, they set out for their first Italian meal and confront their first obstacles: slim sidewalks, vehicles parked without regard for “No Parking” or handicapped signs, uneven paving stones that jar the wheelchair and Ilene’s spine like sledgehammers. Only at major intersections are the corners clear of parked cars.

Nick rolls the wheelchair over the cobblestones and Ilene, pitching about like a rag doll, clutches the chair’s armrests.

“I think we should have brought a seatbelt for me,” she quips, despite the discomfort.

He chuckles. “Yeah, you must feel like you are riding in one of those dune buggies in a Baja road race.” He rivets his attention on the sidewalk ahead, jockeying the wheelchair to avoid the worst of the cracks and ledges and navigating between obstacles with fractions of an inch of clearance. The challenge of staying in the wheelchair distracts Ilene from absorbing the sights, smells and sounds of modern Rome. Still, as they make their way back to the hotel, the taste and aroma of cioppino lingers on her senses.

Nick

Each evening we planned the next day’s outing and how to fight through the obstacles together. We ignored the impact ALS forced upon us––mostly. We didn’t even mention it. We thought of our struggles as merely logistical. “All we have to do is know how to get from point ‘A’ to point ‘B’,” I said. “Once we know that, everything else is simple.”

We learned that Ilene had to use the wheelchair throughout the day. On occasion—or when pressed—she might walk a hundred yards steadied by my arm. An elevator took us to the main viewing deck of the Coliseum where we marveled at the arena and catacombs below and the surrounding views. We tried to imagine what it was like to be a Roman citizen––or slave. Occasionally she stood for a picture. I made sure the wheelchair was out of sight. In the ruins of ancient Rome, I bumped the wheelchair over worn and irregular paving blocks the size of coffee tables while avoiding the wagon-wheel ruts carved into the stones centuries ago.

After two days, the vigilance, jostling and hanging on to the wheelchair had frayed us both.

Ilene

Two days into the trip we were coming back to the hotel after a long day of sightseeing. Two days of my body getting banged around as Nick rolled me over cobblestones small and huge throughout modern and ancient Rome. I’d yelled my alarm at yet another crack I feared he didn’t see. He heard my tone as critical when I just meant it to be helpful. He might have been right, yet that wasn’t my intent, I just wanted to help. “Can’t I help?” Sarcasm coated my words like vinegar.

“What do you think I’m trying to do, hit all the biggest stones and deepest cracks?” He shot back just above my head, as he continued to push me over the bumpy cobblestones.

Tears of helplessness blurred my eyes. I tightened my grip on the wheelchair and saw my knuckles turn white. I had to stop this all too familiar pattern before it got worse.

“Stop the wheelchair,” I demanded, “We need to talk.”

“Why now? Why not wait until we get back to the hotel? It’s only a few more blocks,” Nick pleaded.

I recognized the suspicion and distaste in his voice. He thinks I’m fighting him. I made sure I didn’t have an edge in my voice and said, “Just stop the chair. Just for a minute.”

“OK,” he said, “how about at that bench up there?” He sounded less tense.

“That’s perfect.”

He locked the brakes, moved around to the bench in front of me, and stretched his back in four directions. He sat down with a deep sigh. His shoulders were pulled back and he sat rigid and upright, even though he folded his hands in his lap instead of crossing his arms.

“I’m not complaining, honey,” I said. His right eyebrow arched ever so slightly. He was on guard and waiting. “Let’s be a team on this?” I asked. “I know you are doing the best you can. We have the whole trip ahead of us. If we work together, we can make it easier for us both.”

“OK.” His shoulders dropped somewhat as he waited for me to continue, wariness still written on his face.

“I’m not criticizing you.” His body stiffened and his brow pinched. Before he could say anything, I said: “Even if my voice sounds that way to you.” He sighed and let his body relax.

“I’ll work on keeping the edge out of my voice for you if you can do something for me.”

Although his body softened, the furrows on his forehead betrayed his suspicion. He drew out the first word of his reply. “Whaaat … do you want me to do?”

“Don’t assume I’m being critical when I’m trying to help. Give me the benefit of the doubt. We can both lead the way if we give each other space. That way you can sightsee some more and I can take responsibility for some of the bumps in the road.”

Nick leaned back against the bench, sprawling his arms across the filigreed metal. He looked away as he considered my proposal.

“OK,” he said at last, “and here is something that might help me. Try to make what you see into a question, not an order or demand. Better yet, a simple observation.”

“I’ll try,” I promised.

“I will too.”

∞

Ilene endures the spine-jarring cobblestones her husband rolls her over and concentrates on the sights he brought her to see with her own eyes. He pulls her and the clunky wheelchair up and down centuries-old steps in the Vatican so they can stare in wonder at the ceiling of the Sistine Chapel, the artifacts in the Vatican museums and Michelangelo’s Pietà in St. Peter’s Basilica. Her heart aches for him as he struggles alone with the luggage, wheelchair—and her—at railway stations. The inconveniences seem to disappear when they behold Michelangelo’s David in Florence, the Leaning Tower of Pisa, and the canals of Venice and St. Mark’s Square.

Marilyn and Bill join them in Venice for the cruise. The luxury of the ship they board in Venice overwhelms them as they sail toward the eastern Mediterranean.

Ilene

The four of us created our own little protected environment. We explored ports-of-call in Dubrovnik, Croatia, the Greek islands, Athens, Ephesus and Malta. In the evenings after dinner we dressed in bathrobes as if they were togas. Someone’s bathrobe fell open, exposing some pubic hair. We laughed, named our bubble “Pubian’s World” and filled it with fanciful names, games, laughter and joy as we recounted the day’s activities. Each night before I went to sleep, I said a prayer of gratitude for the experiences.

Nick

With the wheelchair, Ilene and I overcame every obstacle. I even hauled Ilene to the top of the Acropolis and through its museum. I gladly rolled her over the two thousand-year-old chariot-rutted roads of Ephesus and accepted her directions without resentment—most of the time.

“Stop here,” Ilene said. She got out of the wheelchair and tottered toward an ancient column with wild roses growing at its base. She rubbed her hands over the column, feeling its worn and pitted surface. “It’s like I can feel what the stonecutter felt when he carved the flutes.”

“Let me get a picture,” I said. She leaned against the column for support. Although her stance appeared a little awkward, she smiled while I made the photo.

Joyful for the shared experience, I pushed her through the narrow, hilly streets of Santorini to gaze over whitewashed walls and blue domed roofs overlooking the Aegean Sea.

Wherever she could, Ilene eased my chore by getting out of the wheelchair and climbing up or down a few steps, or to get closer to something she wanted to see. I saw how her knuckles turned white from holding the armrests so tight, and how she would rub her hands together when we stopped for a rest. Thankfully, we had no accidents.

Only once, to my great regret, did she limit herself. Late on the night we left the last port-of-call, I asked her to dance with me on the ship’s deserted dance floor. The half-dozen couples scattered around the lounge were watching the midnight sea. I knew she felt awkward, especially after a long day of sightseeing. I knew she was tired and fearful that she might stumble. I also knew I could support her with ease.

She reached over, stroked the back of my neck and said, “No, honey, I don’t think I can.”

“I can hold you up and you can stand on my toes,” I cajoled. After her third rejection, I conceded. I wish I hadn’t. It proved to be the last time we might have danced together.

Bane

The woman and husband disregard my advance during their trip. They treat each of my victories as if they were all I would do to her. They adjust, get by, and adapt to whatever happens in the moment. They do not think about their future.

They ignore me, and in that ignorance suspend me from their world.

I will not be held in abeyance. When they return to the real world, they will find that I took no vacation. I continue my march up the woman’s body.

Ilene

Nick helped me out of the car at the Denver airport and into the waiting wheelchair. Checking my bag at the curb and having an attendant roll up a wheelchair was a blessing. I could have walked, but I wanted to preserve my strength for bathroom runs on the long flight to London and getting to the hotel. Second in line at handicapped security, I gazed longingly at the serpentine thread of passengers. If only I could stand there again.

Shortly after takeoff, I slid my pant legs up, took off my shoes and braces, and shoved them under the seat in front of me. I read until I had to go to the bathroom. Dare I go without my braces? I scanned the narrow aisle to ensure it was empty and, clutching the seatbacks, I made the trip. I avoided the questioning eyes of those I disturbed as I lurched back and collapsed into my seat. I took a deep breath, satisfied with my accomplishment. Then it hit me: Celebrating my ability to perform simple tasks merely masked the pain of my losses. If I admit that I was losing the ability to perform simple tasks, then I want to do as many as I can before they disappear.

∞

At the end of the first work day of conducting proficiency exams for prospective coaches with Bill Kegg and Jim Patterson, Ilene returns to her room and collapses onto the bed. Just before going to sleep she calls her husband.

“It was a good day, but I’m exhausted. There was too much sitting.” Her voice catches and cracks as she fights tears and despair. “Nick, I had to take a cab to the meeting room and it was only eight short blocks away.”

“I understand, honey. I feel the loss in your voice.”

She hears the support … and the anxiety … in his voice.

Bill

I don’t think I ever had as much fun leading a workshop as I did with Ilene. She donned silliness as part of the training as if it was a royal robe. We began the workshop by dubbing ourselves the Prince and Princess of Paddington and frequently assumed bad British accents. The students loved it and made fun of both of us. Ilene found a purple dry-erase pen and waved it around throughout the training to emphasize her “royal” demeanor. I think the dance we created with the trainees helped her forget about the disease attacking her body.

Midway through the course Ilene urged a student who was resisting fully claiming her goals to get out of her seat and lie on her back. Ilene struggled awkwardly to get down on her hands and knees just above the trainee’s head. Then she leaned forward and pinned the woman’s shoulders to the floor.

“Tell us what you want and get up,” Ilene challenged. “Stand up for what you say you want.”

Ilene drew upon some unknown, powerful, source to keep the trainee pinned down. The student, at least twenty-five pounds heavier than Ilene, appeared as surprised as I was at Ilene’s strength. It seemed to take forever for her to match the intensity in her voice and push Ilene off.

I helped Ilene stagger to her feet, and, as she leaned on my arm, absolute joy lit up her eyes. She radiated delight at physically demonstrating the powerful connection between one’s body and their desires. I could only wonder how losing that ability would affect her.

The workshop energized her. She created a magical connection with the students. I understood, though, why she went to her room early. She gave so much to the students—and to me.

By the end of the workshop Ilene had used her purple pen as a scepter, sword and magic wand. She “knighted” me with it, and as a final gesture, gave it to me as a reminder of the magic we’d created. I kept the pen, carried it home in my pocket and placed it on my personal altar.

Ilene

I settled into my seat for the long flight back to Denver, satisfied with my accomplishments. I’d even managed to take a bus and walk to a Hard Rock Café to get a couple of pins for my sister and niece. It was scary, though. My braces made going up and down inclines under intersections difficult and time-consuming. I almost missed the train back to the airport. Still, I felt proud of my little victories of independence, though the battles drained me.

Nick met me in the airport lobby and asked me about the workshop as we drove home. Snow glistened on moonlit pines near home, but I feel Spring’s promise of new life as hollow.

“I had some trouble walking very far, but everything else was great. Bill and I had so much fun. It was the best workshop I’ve ever led,” I told him. “And I got the pins for Lynn and Melissa.”

But my stomach knotted. I set my jaw. I told him about my struggle with walking. “That was my last overseas training. It’s too hard getting around after such a long flight.”

He glanced at me, raised an eyebrow, turned back to the road and nodded his head. “OK, then,” was all he said—thankfully.

Bane

I welcome the woman’s obstinate clinging to independence. It eases the path of my destruction. Stressed, her motor neuron cells become more vulnerable to my relentless attack. Her foolishness eases my conquest.

The nutritionist calls and says his laboratory results suggest a potential for Lyme’s disease. Then the holistic neurologist reports a possible link as well. She refers the woman to an infectious disease specialist for more testing.

Two weeks later the wishful woman and husband sit at the specialist’s desk. “The tests show no trace of Lyme disease,” he says without emotion.

His detached statement rips the woman’s threadbare hope apart. Even so, she questions him about the sensitivity and reliability of the tests he ran. She shows him the nutritionist’s test results. He explains that there are many tests that result in false positives. He admits he is not familiar with the tests the nutritionist ran or the labs that were used. The results confirm the husband’s suspicion that the nutritionist’s tests were quackery, but he keeps it to himself.

The couple walk out of the office and sit in the car in depressed silence.

“Nick,” she says, “traditional doctors don’t give these tests any credence. I know this is something else, and we just have to find out what it is.”

“What else is there?” Defeat shades his voice and despair shadows his eyes.

The woman can’t accept it. Not yet. Not ever. She just has to stay positive. “I don’t know, but there has to be something,” she says. The fierceness in her eyes defies him to challenge her.

I always find this phase of reacting to my attacks curious. Often my victims believe “positive thinking” deters my destruction of their bodies and spirits. Like my other conquests, she will learn. I condemn her to end like the rest, trapped and suffocating in an immobilized shell of a body.

Nick

I sipped the last of my wine as Ilene leaned against the counter while we cleaned up the dishes. “It’s not about me, babe,” I said yet again, “it’s about you.” I always said that when she questioned me about how I was feeling and how I was coping with her growing disability. This was just the beginning. Far more ominous things loomed. I had to be strong for her. I couldn’t dissolve into tears, give in to my pain and have her comfort me. I wasn’t the one dying. When she pressed me for details, I hid behind generalities. “I’m going to make sure we get to do whatever you want to do. No matter what. I’ll make it happen.”

I grinned and played like a star-struck lover: “Your wish is my command, my queen. What is your pleasure tonight, my love? Dishes and TV, or TV and dishes?”

Ilene smiled back. I accepted this small reward for my intermittent attempts at humor.

She knew my diversions all too well. She kept pulling at a few loose stones in the rock wall I built to dam my emotions, made a hole and poked a stick through that jabbed and goaded me into a response.

“I haven’t seen you cry since this started. Why haven’t you cried about it?”

I looked away, gazed at the trees and tried to squelch the pain twisting and rising inside.

“It’s not about me,” I mumbled.

“What do you mean? Do you think you have to hide your feelings from me?” Her voice sharpened. “Or are you hiding from yourself?”

Her last accusation stabbed something behind my wall.

I rounded on her, glared at her, tried to blunt her attack. “I’m not hiding from anything.”

She didn’t believe me. How could she? She must have seen my anguish. Did she see my truth, the truth I hid from her?

“Then why don’t you cry with me?” Why don’t you cry at all?”

“I didn’t say I didn’t cry.”

“When? I never see it.” Ilene’s voice, pitched a cut higher than normal, acted like a spear jabbing me toward an unknown cliff. “I’ve seen you cry before, why not now?”

I shifted away and stared out the window, seeking solace in the peace of the darkening forest. Repeatedly, I clenched and released my jaw, as if to stifle or swallow something.

“It’s not about me,” I said again with brittle forcefulness—it was my only answer.

“The hell it isn’t,” Ilene snapped at me. “You think I’m in this by myself? It’s affecting you every day, just like me. I see it in you. I see it in your eyes; in the way you treat me. You won’t be able to do your book project. You can’t travel. How can you say it is not about you too?”

I continued to avoid her eyes and forced my face neutral and impassive; the wooden mask I hid behind. I chose my words carefully. “That can wait. I don’t have to do that right now. Right now I want to be with you to make sure we make the most of our time together.” I censored one word: remaining.

She sensed my deflection and rejected it before I could move on to another thought.

“Then BE with me. Don’t hide from me.”

“I’m not hiding,” I snapped back. “You are the one who is dying, not me. Nothing else is as important as that.”

I thought that would stop her, yet cracking my mask wasn’t enough for her.

“You think you can’t cry because your wife is dying? What kind of macho bullshit is that?”

Silence hung in the heated air. Ilene waited for my response. I glared at the pines outside, searching for a retort. Finding none, I closed my eyes, buried my anger and sighed. I turned back to her and opened my eyes. I felt my face sag and I tried to take all of her in, all of her fierceness, her vulnerabilities, her spirit, her compassion, her…everything. I spoke slowly, very slowly. I felt as if each word might shred the mask and release a waterfall of words and tears.

“I cry … sometimes … downstairs in my office; … sometimes … in the mornings … sometimes … in the darkroom. But … it doesn’t … do … anybody … any good.”

Ilene softened her voice. “Why don’t you cry with me?”

Again I searched within for a long time before answering. “Because … it takes my attention … away from you. You are the one … who needs the attention … right now … not me. I can wait until later … I have a later … you … don’t. I want … to … focus on you. … Not me.”

“Then why make me work so hard to know what you’re feeling? What do you think that does to me? I’m not an invalid. At least not yet. I’m still doing things I want to do. You don’t have to protect me.”

I had to look away again to gaze on the quiet pines and peaks beyond and close my eyes to avoid revealing the pain I felt; I had to protect her, to keep the tears from gushing, to protect me. “You don’t understand. You just don’t understand,” I mumbled.

Then I turned on her. “I love you,” I said. Pent-up anger forced the words hot and fast past my mouth. “I’m going to take care of you through all of this shit, can’t you understand that? I’m going to go through all of it with you. Isn’t that enough? Do I have to let you know every time I feel sorry for myself or for us? I haven’t seen you cry very much––unless you’re mad at me or the disease. Should I cry just because you want me to, when you want me to? How real is that?”

My explosion surprised her—she wanted real, unvarnished emotion? Well, she just got it.

Still, she yelled back at me, goading me farther. “I go upstairs and beat the bed with a pillow. I cry a lot then, and I feel better afterwards. That’s how I do it. At least I’m taking care of my feelings. You’re just quietly crying in the dark.”

“So you think your way is better than mine?” I yelled back.

“I’m not competing with you!”

“Then let me deal with my grief in my own way!”

“But you’re not dealing with it!”

“I am. My way!”

“By hiding!”

“MY WAY!”

“No you’re not!”

“Yes I am!”

“NO!” And her eyes twinkled.

“YES!”

“NO.”

She stifled a laugh that tried to sneak out.

“YES!” I repeated.

Her voice softened: “Are not.”

I picked up the change in her tone.

“Am too.” I grinned.

“Did not,” Ilene said with tenderness as she stepped toward me.

“Did too,” I whispered, as I wrapped my arms around her and allowed long suppressed tears to fall into the soft comfort of her curly hair.

Looking back, I see how much energy we spent on staying upright: physically, emotionally, and spiritually. We measured strength by movement, independence by distance traveled, dignity by how much help could be refused. But the real struggle was already shifting, quietly and insistently, toward how each of us chose to understand what was happening to her body—and to us.

By March of the first year after diagnosis, Ilene’s body started issuing ultimatums.

In this chapter, water offers temporary freedom, braces uneasy compromise, and independence becomes something to negotiate rather than assume. Ilene insists on motion, purpose, and dignity, at almost any cost.

Ilene

I tapped my fingers irritably while waiting for the website to load. I needed a physical outlet for my pent-up energy. I couldn’t even walk a few blocks, let alone hike or work out. The inactivity was driving me nuts. Was Bailey’s swimming pool open to the public in March? Yes!

An hour later, I hung the handicapped tag on the Mazda’s mirror and used my hands to help swing my legs around to get out of the car. I grabbed the gym bag’s strap, slung it over my shoulder, pulled myself upright and trekked to the pool next to the Platte Canyon High School. The braces forced me to lift my hips higher. I felt like a metronome, tilting from side to side as I walked. I pulled the door open and studied the layout. An office and locker rooms to the left, a big six-lane pool to the right…and a lift used to lower and remove swimmers from the water.

I shivered. Thank God I don’t need that thing. It’s for disabled people, not me. I can manage. I can strengthen my upper body by swimming, and, maybe, strengthen my lower body.

I stood the leg braces in the locker. In a weird way, they reminded me of artificial legs from a science fiction movie. However, those moved, they helped people stay mobile. Mine “helped” by restricting my movement. I shut the door and began the journey to the pool. Lift my hip high. Swing the thigh forward. Don’t let the toes drag. Make sure my foot flips up before flopping down. I trailed my fingers along the lockers and walls to confirm my balance until I reached the twenty-foot gap between the wall and the pool ladder.

I remembered being a life guard, dashing across that distance in a flash to dive into a pool; remembered body surfing in the Pacific Ocean; remembered…tears started to well up and I shook the memories away. Those quick, surefooted days belonged to a carefree past. I found a dry path through the slick water splotches on the concrete.

When I grabbed the handrails, I freed my breath, steadied myself and used my arms to help lower myself, step by careful step, into the pool, and pushed off onto my back.

For the first time in months my legs felt light, like they always had.

The water buoyed my legs and I stroked forward. I kicked my feet. Normal movement!

It was not the strong kick I was accustomed to, yet it was enough to help me move through the water into the second swimming lane.

As I swam, I couldn’t help comparing myself to the swimmers in the adjoining lanes. The guy on my left was faster, but he had fins and a snorkel. However, wow, I was faster than the swimmer on my right. I kept my eye on her. She had poor form and must be at least seventy years old. Stop comparing. I let go and relished the ability to move with memories of athletic grace, and my spirit lifted. I gave in to my competitiveness and swam until my muscles burned with a familiar sting that reminded me that fatigue led to more strength. On the drive home, I was tired, and more than satisfied. I was elated over the physical activity.

As I climbed the stairs from the garage to the main floor, exhaustion overcame my elation and I flopped on the bed to take a nap and recover my strength.

Bane

Besieged motor neuron cells suffer. The woman’s calves and thighs twitch. She can’t sleep. Rest allows the intensity of the twitching to abate and cease. She doesn’t want to admit that I will never let her recover her strength. Every exertion she makes stresses the motor neuron cells awaiting my attack. I nibble away at the sheath protecting those cells.

That night the husband calls from the photography workshop he is attending in Santa Fe. Worried about the effect on her body, he questions the wisdom of her swimming. She snaps at him, says she knows her body. She doesn’t know me though. They cut the conversation short.

The woman tries to resurrect the exhilaration she felt while swimming. Her joy feels as crumpled as the damp tissue clenched in her hand.

Beneath her resentment she knows he is right. Still, she clings to the notion that somehow she can beat me. But no one does.

Nick

The holistic neurologist’s office was what every real estate agent would call “cozy.” The waiting and examination rooms were not much bigger than office cubicles and decorated like a home. They fit her diminutive size perfectly. Only her professional manner and attire kept me from thinking of her and her office as holdovers from the bygone hippie era.

Ilene held my hand tightly as if it were the hope she clung to. I think she felt she had found a kindred spirit. I tried to mimic her hope, yet it didn’t feel real.

After the doctor studied the MRI, she agreed that there was nothing to indicate a spinal cord injury. Her muscle testing, identical to Dr. Ringle’s, merely confirmed Ilene’s weakness.

Ilene leaned forward in her chair. Her intense gaze seemed to probe the neurologist’s eyes for any hint of reassurance or equivocation. She recounted the tick bites and asked if the symptoms could be Lyme disease.

“I’ve heard about some people who have been misdiagnosed with ALS when it was really Lyme disease,” the doctor said. “I’ll have to do some research on it. It will take some time, but I’ll see what I can find out.”

I wanted to believe it was a sprig of hope for Ilene, but I doubted it could grow. I didn’t know how I could support her and still be realistic about the prognosis.

As we drove to the appointment with Dr. Ringle, Ilene practically bounced in her seat. “I knew it, I knew it could be something else.” I glanced at her and saw excitement and hope beaming from her. A hope I did not share, and I’m sure it showed on my face.

I tried to temper her excitement. “Let’s talk to Dr. Ringle about this and see what he has to say,” I said as neutrally as possible

She must have felt my skepticism punctured her hopeful bubble.

“You heard her,” Ilene said curtly. ”He’s too traditional. He won’t accept her opinion. He doesn’t have the time to check out anything outside of the usual way of studying the disease.”

She glowered at Denver’s skyline as it passed by, and waited for me to respond.

“OK,” I said at last, “we don’t have to tell him we saw her, but we should at least ask him about the Lyme disease possibility.”

“We already talked about this!” I felt the pain in her shrill voice, born of an aching desire to fight a winnable battle. “He will not look beyond his traditional scientific training. He’s not interested in alternative diagnoses or treatments. Don’t tell him we saw her. We can talk about her ideas, but don’t identify her. He’ll just roll his eyes and dismiss her.”

Reluctantly, I agreed. If I could not be the hope she sought, maybe I could be the rock she could stand on to keep her head above the sea of evidence condemning her to a bleak, short future as she searched for a life ring. Somewhere.

Ilene surprised me. She asked Dr. Ringle about Lyme disease. He had heard of the Lyme disease alternative, but discounted it. He told us there were a lot of people out there with wild theories about ALS willing to take our money in exchange for false hope. He said he was a traditional scientist and didn’t engage in wild-goose chases for alternative diagnoses.

Afterwards, we sat in the car in the hospital’s parking lot. I wanted to get away, yet couldn’t. We had to talk about it before we left, otherwise it would be hanging out there. Ringle’s response was exactly as Ilene predicted. At least he gave her kudos on how well she was adapting to the braces. I didn’t know what to say.

Ilene broke the silence. “Looks like we’re both right,” she said lightly. “He doesn’t think Lyme disease is a possibility, and he’s too traditional to investigate it.”

Her voice hardened. “I’ll prove him wrong. I know it is something else.”

I felt she was saying the very same thing to me. She had to prove both of us wrong. I hoped she could. I just didn’t believe it.

∞

Over dinner, Ilene grins as she tells Nick, “We called it the ‘crips and supermodel’ class.”

He chuckles to hide the underlying implication as she talks about the class.

While preparing for the Denver class, she tells him, her companion coach, Caroline, reminisced about how a year ago Ilene had picked up a man nearly twice her size and swung him around to break through his resistance.

Ilene had laughed and said, “I don’t think I’ll be trying anything like that this time.”

“I decided to wear a skirt, Nick. It was time to acknowledge the braces. I told them about skiing black diamonds at Breckenridge last year; about the diagnosis; about how the braces kept me from tripping, and asked for their patience.”

She doesn’t see the contradiction in admitting the presence of the disease to the class and her search for an alternative diagnosis.

“We also had a man with multiple sclerosis using a walker and a woman subject to random grand mal seizures. It was hard for me to get around,” she continues, “and I could barely get back up when I squatted down to connect with the trainees sitting in their chairs. The man’s walker with its built-in seat makes me think I could use one to get on their level.

“Last night, when Caroline and I reviewed the day, she pointed out that there were three tall, beautiful women in the class. That’s when I told her it was our crips and supermodels class.”

Nick’s gut clenches as he too avoids thinking about what the future holds.

***

Nick finalizes the trip to Italy and the Greek Islands, and thoughts bounce through Ilene’s mind like steel balls careening in a pinball machine. It would be the vacation she could have only dreamed of 20 years ago. Now it would be real. Why couldn’t I have done this before—when I was healthy? How am I going to get around in Europe? Those ancient bumpy cobblestone streets, the narrow sidewalks, the high curbs. I can barely lift my feet to climb a curb here.

“Nick, I’m going to need a wheelchair,” she tells him over dinner

He shrugs. “We’ll manage. I’m in pretty good shape for sixty-three years old. I think the hardest part will be handling baggage and a wheelchair between destinations.”

His seemingly eternal optimism eases her fear and she releases her worries about the trip. It will be what it will be, she tells herself.

Ilene

In the quiet morning moments when Nick was downstairs writing, I would start my daily meditations. Often the cats lay purring as I sat up in bed. All I had were questions, unanswerable questions, and though they persisted, sometimes I got beyond them.

Am I being foolish by continuing to work? What is the meaning of work? What do I continue to do? What do I give up? Do I keep living as if I can always cope with the changes? Do I just want to maintain a normal life? Why me, why now, what will happen to Nick, to my family? How can I stop this from happening? Can I meditate it out of my body? What is the reason for this?

I accepted each question as it surfaced in my mind, let it sit there, and waited for it to disappear. I wanted answers yet let that desire go––mostly. The questions were harder to release. Only when the questions stopped coming was I able to free my mind. On those rare occasions the questions disappeared into the white background noise of my mind. That was when I sensed a presence, a quiet reassurance beyond words. It was so elusive and ephemeral—I treasured those few seconds of tranquility. Seconds of peace within hours, days and weeks of fighting.

The braces and medication gave me some hope, although the dwindling strength in my legs contradicted that hope. How long could I maintain my independence?

Bane

“I’ll help any way you want,” the husband says. “If you want to keep leading workshops I’ll go with you and push you through airports and hotels.”

“Thanks honey, that’s very sweet of you,” she says.

He misreads her noncommittal response as encouragement. He suggests getting a RV and working on his book project while she leads, says they could travel other places between the workshops. She could do her coaching on a cell phone.

The woman peers at him with skepticism. He doesn’t see it.

“Getting there isn’t the problem. It’s what happens in the classes.” She says.

His persistence causes the knot in the woman’s stomach to wrench. She lashes out.

“Don’t you get it? I couldn’t move in a wheelchair. I couldn’t get around to the participants the way I need to. It is hard enough with these damned braces.”

From deep inside her, anger and resentment gush upward. Tears fill her eyes, streaming down her face as she attacks her husband with feelings intended for me. He’s pushing her to accept impotence and dependence. Her eyes redden: hot with anger, hurt, and fear.

“Can’t you see?” she lashes out, “I can’t be me!”

“But you are not your legs.” He tries to steer her to the possibilities he sees. “You can still do everything––well, almost everything––you do in your workshops.”

Her face twists in anguish words cannot reveal. He engages in the fight despite seeing her pain, “I’m just trying to help…trying to find a way for you to do what you want to do.”

“Fuck! I don’t even know what I want to do. What if I just want to stay home and do artwork and feel sorry for myself? Would I still be OK? “Would you still love me then?”

Her nose starts running. She lurches on unsteady legs toward the bathroom for tissues. She hates how he gets attached to an idea and won’t let it go.

He follows, unwilling to give up. “You know that’s not you talking,” he shouts. “You’ve spent your whole life counseling, coaching and training people. It’s what you do and you do it well. I’m just trying to show you how you can keep doing it ... if you want to.”

She throws tissues soaked with tears and snot into the sink. Snatching more tissues, she turns back to glare at him. Her voice rises to join the battle, angry and cutting. “The disease, whatever it is, is making me slow down, don’t you see? I’ve got to slow down and take care of myself. I can’t keep doing what I’ve been doing.”

“I’m just trying to help, to create alternatives for you, for us,” he says slowly, quietly. Still defensive, his eyes flare with anger. He reaches toward the woman. She turns away and grabs a tissue. His hands drop to his sides, useless and frustrated, as her rejection overcomes him.

When she turns back at him, he is halfway out the bathroom door.

“That’s it?” she yells. “You make this mess, then run away scared?”

He stops and turns slowly to face her.

White-hot anger—or fear—wrinkle his face wretched. His words, though softly spoken, betray his defiance—or defeat.

“What do you want me to do?”

“Nothing,” she snaps.

He stands there. Rigid. His shoulders sag, his eyes, dull and blank, stare at the floor.

“I don’t know how to do nothing,” he mumbles.

“You can learn, can’t you?” she jabs, her face still wet with tears. Her eyes, though, reveal the truth behind the anger. These are tears of hurt, frustration, confusion—and fear.

∞

Nick’s eyes flash at the tone of her voice, then soften as he reads her eyes; the green eyes he knows so well and loves. He stands there, a silent mile-long yard away from her mellowing glare. He takes a step forward, and before she can react, he wraps his arms around her and pulls her close to his chest, pinning her arms to her sides. He doesn’t look at her; he simply lays his cheek on top of her head. Her tears soak his T-shirt.

Slowly she bends her elbows, lifts her arms and wraps her hands around his waist. Her fingertips touch the base of his spine and sobs wrack her body.

“I’m sorry I’m doing this to us,” she burbles thickly.

“Shhh,” he says, “Shhh, it’s not your fault. We’re in this together.”

He does not let go for a long time.

Independence is not lost in a single moment; it erodes through countless negotiations with reality. We were still bargaining about work, travel, and tears, believing that compromise might preserve the self we recognized.

Ilene teaches, travels, dances, and dares the disease to define her, and privately refuses its authority. I try to hold both faith and realism at once, uncertain which will serve her best. Between us, something unspoken begins to strain: not love, but the cost of believing different truths at the same time.

∞

Winter’s bitter winds whipsaw the ponderosa pines outside Ilene’s office windows. What she learns about ALS lashes her heart raw. She reveals the diagnosis to her family, friends and co-workers with a brave front. Privately, she refuses to accept the diagnosis. Nick and she intensify their research on the Internet, fishing for alternative causes to the devastation they feel. Ilene resists reading past the mid-stage symptoms. He, however…

Nick

Mid-afternoon, I trudged up the stairs to see Ilene in her office. I leaned against the door frame, and as I waited for her to finish typing something on her computer, I surveyed her space. My eyes embraced the first of the sand play figures I found for her, a pair of glass unicorns, now among a thousand sand play objects we collected over the years for her art therapy practice. “I’m not finding anything new,” I said. I hated the flat pitch in my voice. “Everything is so discouraging, especially the way the disease progresses.”

Ilene’s eyes narrowed as she shot me a fierce glance. “Don’t tell me. I’m not reading about the end stages.” Then her eyes softened a bit. “Besides, I know it is something else, Nick. I know it. I know my body. Remember, I grew up with a missing condyle in my jaw that made my face lopsided and made me even more geeky than other skinny kids.”

“I know that, hon.”

“We’ve just got to keep looking. I waited years, until I was sixteen, for the operation to fix the birth defect. They wired my jaw shut for months. I learned I had to listen to my body and take care of it. There’s got to be another reason for these symptoms. I just have to find it.”

I stepped into her office and slumped into the love seat. I tried to stay neutral, tried to keep from tearing up, tried to hide the weight sinking in my chest. It didn’t work.

Ilene said, “I’m sorry I’m doing this to you, taking you away from your projects.”

I’d decided to keep everything as normal as possible. “Honey,” I said, “dealing with this disease is not about me, it’s about you…and us. I’m going to make sure we do everything we can to make whatever time we have left together the best that it can be.”

Her green eyes welled up with tears. I thought she appreciated what I said.

“Don’t give up on me!” she snapped, “I don’t need to fight you as well as the doctors. I need you to believe in me! I know this is something else. I’ve just got to find out what it is!”

She stood up, stalked out to cut off my response and marched into the bedroom.

I followed her and wrapped my arms around her in a fierce and hopefully comforting embrace. She tried to push me away, struggle out of my grasp. I wouldn’t let her go. I had to let her know I would be there for her in every way I possibly could.

“We won’t let this destroy us, or who we truly are,” I said. “We’ll look at all the alternatives. We also need to deal with what we’ve been told. You were an art major in college, an art therapist for twenty years. You’ve never seen the great art of Italy. We’re going to go while we still can. I want that for us—even if we find out the disease is something else.”

Ilene sagged and dissolved into tears. “But it is about you too. What I’m doing to you. Your photo workshop next month, your friendship book project, and our life together.”

I held her emotions as I held her body, and tilted her head back so she could see the softness I felt in my eyes and heart. “I can still go to the workshop,” I whispered, “you’re not an invalid. I can do the book later…after we deal with the disease—whatever it is.”

She scoured my eyes, searching for any hint of regret. I revealed nothing of that.

Then her eyes flashed with not-so-mock anger, and with a teasing grin, she said, “Don’t you dare start treating me like an invalid either.”

I returned her smile and shared a mischievous thought. “I wouldn’t think of it, but if worse comes to worst, I’ll be there to wipe your butt if necessary.”

She pinched her eyes and shot me a fierce glare. “Square eyes” I called them when her eyelids seemed to form boxes around her eyes—usually when she was angry with me.

“That won’t happen in this lifetime. The warrior in me will not let that happen. I’ll leave long before then.”

Her retort didn’t surprise me. “Whatever you decide, my love, I’ll be there with you.”

She dried her eyes, returned to her office, and I plodded back downstairs. She had a workshop to prepare for, clients to talk to, and research to do. And I, I sat in my office, holding my head in my hands, sobbing in silence, mourning the loss of things not done in the past, things that could not be done in the future. I wiped my eyes, swore to stop feeling sorry for myself—she was the one dying—and vowed to support her in all of her choices.

Bane

Each twitch in the woman’s leg signals a dying. She stuffs her fear into a dark corner of her mind. She denies herself time for self-pity or contemplating a foreshortened future. She speeds down the mountain through the twists and turns of highway 285 to Denver to lead another workshop––the first since the diagnosis. Throughout the drive she plots against me. She walks to the meeting room. I don’t make her tired. Not yet. I’ve made every walk a journey. I make her conscious of walking, conscious of the extra effort it takes to lift her feet a little higher to ensure she doesn’t trip over herself or over a small unevenness in the pavement.

Early in the workshop she rises from her chair to begin a presentation. Her right leg buckles. She catches herself, then says, “You may have noticed I had a little difficulty standing up just now.” A determined smile lights her face. “I chose not to give in to that weakness. That is what being fierce is all about—not just for yourselves, but for your clients. Be fierce in supporting them in confronting their weaknesses.”

The woman walks slowly into the center of the circle of students, describing how rich life can be when you know who you are and, more important, when you act on that knowing.

Later the woman confronts an argumentative student. A half smile creeps onto the student’s face. His eyes light up with delight at the challenge. At the end of the day he tells the class that her coaching him “in front of the room with toughness” was his favorite part of the day.

She reveals nothing about the cause of her weakness.

Yes, the woman thinks she’s tough. I will strip her of that arrogance.

Two weeks later she limps into a new workshop, determined to use me as a lesson. She tells the participants her diagnosis. During the workshop her co-leader decides to demonstrate co-activity in coaching. He asks for someone to dance with the woman.

She stands awkwardly

A volunteer dances with her. She barely lasts through the tune. Her eyes flood with tears as she recognizes her inability to dance the way she once could. Steadying herself on her partner’s arm, she tells herself, I’m leading this. Make lemonade. For them. For me.

“My tears show me, and I hope you, that I can be both alive and strong even while vulnerable,” she says. “My spirit chooses life and joy instead of death and depression. You too can choose a vibrant life for yourselves and your clients. For me the diagnosis is a powerful gift, a gift to be opened, examined and cured,”

She will pay for her defiance. Dearly.

Ilene

We sat in the stark examination room waiting for Dr. Ringle. I’d suffered through getting the custom form-fitted braces on my lower legs and feet. They were clunky, ugly things that kept my feet locked in a right angle to my legs. Fitting them had been a bitch, given my skinny legs and high arches and narrow feet. And shoes. None of my pretty shoes fit over the braces. I couldn’t wear heels with them. When we went to get shoes that would fit over the braces, I was forced into wearing shoes two sizes larger than normal. They looked awful and brought back memories of the orthopedic shoes I wore in elementary school. I hated them. I thought I didn’t need to wear the braces all the time if I was careful how I walked.

Dr. Ringle put me through the obligatory muscle testing. With great confidence, I easily pushed and pulled his arms with my legs, arms and hands. I had to admit—to myself only—it was harder to lift and push my feet against him than last month. When he asked why I wasn’t wearing the braces, I told him “I wear them if I’m going to be walking a lot or if I’m tired. But I’m waiting to find some cute shoes to wear with the braces before wearing them all of the time. Besides, I can still walk pretty well without them.”

A quizzical, uncomprehending expression crossed his face and he glanced at Nick.

Nick shrugged his shoulders, “It’s a girl thing, Doc. We don’t understand.”

The doctor’s impish blue eyes brightened behind the wire rimmed spectacles and he laughed. “No, I don’t suppose we do.” Then his eyes turned serious, and bored into me.

“Even so, I want to see you wearing them all of the time. It is better that you tax the nerves as little as possible. ALS leaves you with fewer cells down there trying to do the same amount of work. You need to help them out as much as possible. And, I want to see how they fit and how you walk in them.”

I felt my face flush red as his words plunged my hope like an anchor into the sea. “OK, I’ll wear them more. I’ve just got to find some shoes that will fit over them and look good. But I still want you to know that this isn’t ALS. I’m going to find out what it really is and fix it.”

“I hope you are right,” he said as he shook his head and smiled back.

I didn’t hear his clue. I walked out determined to find another explanation, and holding Nick’s arm “just in case.” It didn’t occur to me that I would reach a point where I would wear my pretty shoes once again––but only because I couldn’t walk. If it had, I would have rejected the notion. Then.

∞

Nick waits in the doorway to Ilene’s office while she finishes a coaching call.

“Do you remember Michael Newton’s Journey of Souls and Destiny of Souls books we read a few years ago?” he asks.

“Yeah, the ones about past life regression under hypnosis and life between lives.”

“Well, I’ve found someone in Boulder who was trained by him. What do you think about scheduling a session with her? For both of us.”

Excitement lights her face. “That’d be great, Nick. What made you think of it?”

“ I got to thinking about the disease and wondering why? Why now? Why is this happening when things are so good for us? Maybe we can find some unexpected answers.”

“Let’s do it,” she says, while her eyes narrow. “But stop assuming I have ALS. I still don’t think that’s what these symptoms point to. Maybe this will give us some different clues as to what this is all about.”

His unexpected search prompts her to pull out her notebook and reveal her spirit dialogs.

Tears flush his eyes as he reads. “I guess we’ve been thinking along parallel lines,” he says, blinking back his fears. For him, the words are not hopeful—at least for this lifetime. They point toward creating a celebratory closure for her life, not finding an alternative to the diagnosis.

A few days later Ilene lies on a couch in Linda Backman’s comfortable home office. That Linda was first trained as a psychotherapist reassures Ilene. Under her guidance, Ilene slips into a hypnotic trance and travels back to a recent prior life while a recorder captures her words. She describes herself as a simple factory worker who had lost his hand in an accident. Unable to care for his family, and his pride destroyed, guilt overtakes him. His failed attempt at suicide leads to an infection which eventually kills him.

Ilene reports that his death leads her to a space between lives in which she experiences a sacred place, a small community of fellow souls and a more advanced spirit guide, who calls himself Malachi. Here, she discovers that her learning for that lifetime was cut short. She says she “chickened out.” She fails, however, to discern a reason for her illness.

After she comes out of the trance, she tells Dr. Backman, “I wonder if my soul intended to learn something about physical loss or disability in this lifetime?”

On the drive home, while she and Nick recount their experiences under hypnosis, Ilene recalls an incident from her childhood.

Ilene

“I was about five, and after weeks of ballet practice, I was going to perform in a recital along with the other students. But I got sick with a high fever and Mom wouldn’t let me dance. I wanted to shine in the limelight on stage. I went to bed and cried my heart out.

“Then I remember being high up in a ceiling corner of my room, looking down on me.

“A voice told me I couldn’t depend on my physical ability or beauty to get through this lifetime. I was supposed to learn new skills.

“I stopped taking ballet because I knew I wasn’t supposed to be a performer.

“I’ve always thought my birth defect and geekyness kept me from standing out, even after my operation. Maybe that’s why I’m having these problems now. I’m standing out more, getting more recognition.”

Nick remained silent, contemplating his response. “The first part of the story might be true, babe,” he said softly. “But,” his voice hardened, “I don’t buy the last part for a minute. You’ve worked too hard in your profession and on yourself for that to be true.”

I fell inward. Could that vision from so long ago still be directing my life? Could I figure it out? Could I stop it? I recalled the scimitar dream. Maybe the guide sliding between the strokes of the scimitar was my higher self, my soul, my something, sliding between lives lived and the other side of life and death.

Nick

Ilene found a website describing how Lyme disease can mimic ALS. Last year she had had two tick bites that developed into target-like sores. She was so excited by the possibility of an alternate diagnosis, she scheduled an appointment to discuss Lyme with Dr. Ringle. Then, her primary care physician told her about a holistic neurologist, and Ilene’s hope rose like a weather balloon. As one who’d embraced the holistic health movement for thirty years, she rejoiced that there was such an unlikely person. The term sounded like an oxymoron to me.

I feared she was clutching at flotsam, hoping it would save her. I put my skepticism aside and supported her decision—it was hers, after all—to set an appointment with the new neurologist. The appointment turned out to be the same day that we would later see Dr. Ringle.

The new neurologist wasn’t the only alternative source Ilene sought out. She thought her nutritionist might offer hope and she asked me to go with her on her next visit.

Ilene described Dr. Ringle’s diagnosis to the nutritionist and after the initial surprise wore off, he held out hope. “These symptoms can be created by other causes,” he said. “Remember how your earlier tests showed stress on your adrenals? I think heavy metals might be causing your symptoms. Let’s do some tests.”

Ilene reclined on the examination table and he pulled out a case containing dozens of vials of plant materials, metals and chemicals. One at a time he placed a vial on her belly and tested the muscle strength in her arms.

Ilene’s arms weakened when heavy metals were placed on her abdomen. “I’ll have to do some more research and testing to know which of these metals are affecting you,” he said. “Then I can recommend some nutritional supplements to help you.”

Ilene seemed relieved to hear his analysis. It made no sense to me.

I rested my chin on my fist with my forefinger covering my mouth, working to keep incredulity out of my voice. “How can this be accurate? How can having some material in a bottle affect someone like that?”

“It just does,” the nutritionist said. “You don’t have to believe it, but it does work.”

I let the dismissal disappear into silence, unwilling to challenge him in Ilene’s presence. I wanted her to have hope too, I just didn’t want her to be devastated if a hope sustained by belief and not science proved false.

Ilene didn’t question the results. She provided blood, urine and saliva samples to be evaluated by some lab. Hope, in the form of supplements to boost her adrenal glands’ functioning, lay around the corner. I believed it was little more than quackery.

Ilene

As he promised, Nick made arrangements for a trip to Italy and, to my surprise and delight, added a week-long cruise to the Greek Islands. In only four months I would have a vacation like none I had ever experienced.

If I hadn’t found an alternative diagnosis by then, I figured I would still be strong enough to get around without assistance. Wearing the stiff braces all the time grated on me, but I had to admit that they relieved my worry about dropping my feet as I walked. I could pace myself and adjust to a clumsy gait.

At the end of the month, I joined my sisters for a retreat at a fancy spa in Sedona, Arizona. I welcomed the break from the crush of client calls and leading workshops. The three of us had talked about doing a trip like this for several years. The unspoken agreement was that it was now or never.

On arriving at the resort, I evaluated the distance between the main lodge and the outlying rooms of the spa. It would be challenging. When I learned that there were electric carts available, I took a deep breath, let my shoulders relax and looked forward to a fun, relaxing weekend.

That first afternoon, Janet and Lynn rushed off for beauty treatments. I stayed in the room, resting, not caring about anything. They came back with oil-flattened hair that would stay that way until tomorrow morning’s treatment. Toward evening, a light snow fell on the red rocks and adobe walls, making everything magical. My sisters played in the snow while I took pictures of them, participating in the only way I could.

The next afternoon, Lynn and I prepared to go soak in one of the whirlpools. At first, I tried using the resort supplied flip-flops. I discovered I couldn’t lift my feet high enough to make sure I wouldn’t trip. I had to lean on Lynn to walk to the pool barefoot. In the whirlpool, Lynn supported me and spun me around in the water like a leaf caught in the eddy of a stream while I scanned the blue sky and red rocks surrounding the spa.

“Lynn, I wish this moment could last forever,” I confessed.

“Me too,” she said.

Bane

The women discover how my attack destroys her mobility. They avoid stairs and use elevators wherever possible. Block-long walks exhaust her. None of them comment on the changes. The woman retreats to the spa’s meditation room. She listens to recordings she hopes will banish me from her mind and body. Sometimes I cannot penetrate her mind. She is somewhere else. However, her body inexorably falls before my advance.

On the last day, the woman splurges on a “healing practitioner.” She reveals her diagnosis. The healer says, “You are losing energy from your lower body. You give too much away to others. You need to put your feet in ice water every day to keep the energy from flowing out.”

Riding back to the airport, the woman recounts the healer’s recommendation, laughs and says, “Nick thinks my feet are like snowballs as it is, why would I make them into ice cubes?”

For the first time, the woman recognizes an offer of well-meaning advice as utterly useless. I will force that awareness on her again … and again.

Some forms of courage are bold; others are quiet. At this stage, Ilene’s courage burned brightly, outward and visible. Shadowed by grief, mine turned inward. Determined to be strong for her, I did not know how to share my grief. We were still walking side by side, but no longer on the same inner, or outer, path.

In this chapter, Ilene rejects the narrowing future implied by diagnosis, while I feel the weight of impending fate. She begins searching for alternative explanations, for meaning, for reprieve; convinced that resolve, intelligence, or spirit might still change the story unfolding.

Ilene

Nick sped through Turkey Canyon and past the distracting symmetry of the snow-laden pines bordering the road on our way to the University of Colorado neurologist. I crabbed at his driving five to ten miles above the limit and he slowed down. Last night he proposed a trip to see the Renaissance masters I studied in art school. Hidden in his offer was an unspoken concession that I would be unable to walk if we waited longer. I didn’t want to talk about it then—that would have been admitting defeat before starting to fight. I couldn’t do that. Not then. Not ever. Shrouded in the silence of hope and despair I endured the drive.

He tried to inject something positive into the gloom. “You know, hon, if the doctor confirms the ALS diagnosis, we’re going to go to Italy like I promised.”

“I don’t want to think about that. Not yet,” I said.

Lost in a fog of hopes and fears I could not dispel, I wrapped invisible armor around me. I avoided saying anything, to keep from lashing out at him, or fate, or anything outside of me.

I held Nick’s arm as we walked down the wide, polished hallway leading to the department of neurology. I didn’t trust my feet and wanted to make sure I wouldn’t fall if I tripped. A middle-aged woman wheeled a shrunken, helpless man toward us. Probably her husband. His head slumped forward, chin moored to his chest. His eyes, dull with resignation, flickered through me like a falling star. Fear of that future pierced my confidence like a needle popping a balloon. I caught myself staring, then avoided the woman’s eyes by glancing at Nick. He ignored the couple by studying the sky outside the windows. Did he feel me clutch his arm involuntarily? Right then I vowed I would never allow myself to be that helpless. I wouldn’t put myself, or Nick, or my family through that. Mind over matter. All of my favorite health and healing books said so.

Stiff and silent, we waited in the sterile examination room. I couldn’t find any wisecracks to relieve the tension, and Nick rarely joked about anything. I twirled the hair on the back of his neck hoping to calm myself down. The room smelled … too clean, too functional, too impersonal. The door opened and a salt-and-pepper bearded man bounced in, his elfish eyes peered at me through round wire-rimmed spectacles. His smile was wide and genuine. I let my body relax.

“Well, hello there. I’m Steve Ringle,” he said and extended his hand.

He had me push and pull against him with my legs, feet, arms and head. When I pulled my right arm against his, my strength caught him off guard. He flexed back to keep from being pulled toward me. I liked surprising people who underestimated me because of my small size. He wanted to see how well I spread my fingers against his grasp and had me clench his hand. I enjoyed feeling the strength in my body—always had. But my feet ....

When I pushed and pulled my feet against his hands, like the footsie game I often played with Nick’s feet in bed, something didn’t feel quite right, and I couldn’t figure out what it was.

Then he asked me to stand and walk on my heels. This was different, I thought.

I stood up to rocked back on my heels to lift my toes. My feet refused to rise. They felt glued to the floor. A chill, colder than a freezing ski-lift line, shriveled my stomach to a lump of ice and I shivered. I only weigh a hundred pounds, how come my ankles don’t work?

My eyes must have been wide with shock when I probed Nick for an answer he could not give. He saw my panic.

Bewildered, I blurted, “I can’t do it!” I laughed to cover my embarrassment and fear. “I can’t do it. Why can’t I do it?”

“Maybe it’s your balance,” Nick said as he stood and moved behind me. He offered his hands, hoping to steady me.

With Nick’s support, I tried to stand on my heels again, and failed … again … and again.

I couldn’t do something I’d always been able to do. My body had betrayed me … utterly. My mind numbed out; I couldn’t comprehend what had just happened. For a moment, I felt detached, as if I were looking down on the three of us from a high corner in the examination room.

Bane

The doctor listens carefully to the woman’s denials. She thinks she knows I am something else. She plans to prove it to him by eliminating the symptoms or at least finding another “cause.” Her absurd thoughts flail about. They do not touch me, or the doctor.

He does not flinch.

“You have ALS,” he says, as if he knows me well; as if she owns me, when in fact it is I who possess her. However, with some honesty, and a bit of modesty, he admits no one understands me; no one gets rid of me. He gives her a prescription for Rilutek, a drug that occasionally retards my advance by a few weeks. He prescribes custom leg braces to lock her feet at right angles to her legs so she can walk without tripping over floppy feet. He does not reveal how temporary her ability to walk with the braces will be. He doesn’t know. Only I know.

Nor does the woman dare to ask.

The husband admires how his wife and the doctor banter back and forth as she alternatively challenges his diagnosis and asks how I develop over time.

Both the doctor and the woman avoid the central question.

Finally, the husband asks the unspeakable: “If it is ALS, how long does she have?”

“It varies,” the doctor says, sidestepping the question, “It depends on the person. How you live may influence the progress of the disease. Some people survive twenty to thirty years, others, two to three months.”

True enough. He and I know the reality. Most of my campaigns achieve victory in two to four years. The doctor knows that too. He merely wants to offer a sliver of hope.

The woman walks out of the hospital, holding her head high. Her mind races with possibilities that do not include me. She’s determined to prove the doctor wrong. She smiles even as she clings to the husband’s arm. She scans the pavement for anything that might trip her.

The doctor affirmed my presence. The woman no longer confronts the unknown. She imagines that she is back in control. She imagines she can find a different cause for my symptoms. The silly woman grasps memories to bolster her irrational confidence.

They sit in the car for a moment before leaving the hospital. “I’ve always done better when I know what I’m up against. You know that about me, Nick. I’ve known something was wrong with me for months, years even. Remember back in San Diego when I said I felt like I had less energy? This is just a symptom of something else. I’ve got to find out what it is.”

The husband hears the contradictions in his wife’s logic and her denial. His breathing slows and his sinking heart thuds. “We’ll make the most of it, babe,” he says, “Whatever ‘it’ is. And I’m going to start planning that trip.”

The neurologist is right about one thing. I alone decide how long I take to destroy a body. I don’t reveal that secret. Not even to Death. Death must wait until I finish my conquest.

I will tell a secret: I have always been with the woman, hidden in a combination of genes in the X chromosomes. I lay in wait for the opportunity to slip out and attack. She still cannot comprehend how I will change––and end––her life.

Ilene

The next afternoon, alone in my office after coaching clients, I sniffed and sipped hot lemon tea. My eyes grazed lovingly over the altar on the shelf above my desk. A pewter castle with crystal spires, a stylized Egyptian cat, an abstract Native American shaman and a mermaid formed an arc, the radii of which converged on a gift from Nick, a fairy queen offering a globe to heavenly gods. Our German shepherd, Tasha, white as the snow outside my window, slept behind me. Miles, the black cat, curled on the love seat. Snow, piled up on bare rocks and pine trees on the hillside, softened everything. This peacefulness was why we moved here. But ….

My feelings stormed as if they were a blizzard exploding in a million directions.

I opened my computer and wrote:

“Stark Landscape”

Walking’s gait is not the same

Lurching. . .

Lurching on: sticks and stones

may break my bones but …

age will never hurt me.

I know not this body,

that only yesterday obeyed every command;

Stepping from sky to earth on graceful tiptoe.

Crystal slopes; the swoosh of winged heels.

Dancing goddess under staccato spell.

Legs no longer answer last call.

Hands cling . . . claw. . .

at a door marked “hope,”

demanding some handout . . . worthy of this sacrifice.

Clarity, new assignment, sign of arrival would suffice,

assuage this thirst for meaning and life.

Tears of recognition sting as time slows. . .

molasses pace.

Syrupy, sweet hints of a path altered

call, seductively.

Frosty promise in the air.

Howling mist swirls from cornices,

steeper than any known before.

Spirit rides on waves of energy,

over razor’s edge.

Creative urges

driven like snow,

pile up in drifts.

Stark landscape,

white on wretched white.

I wiped the tears that streaked my face, sighed, and closed the computer.

***

During the week after Ringle’s diagnosis, my courage at knowing what I was up against evaporated, replaced by disbelief. My resentment and anger simmered deep within, seeking release. Anywhere. I refused to see my days as numbered. “I don’t want this fucking disease. It has to be something else making me feel this way. I know it is,” I exploded at Nick over lunch.

Nick heard my outburst in silence, pondering his response. He knew I would fight the diagnosis and Western medicine’s limits. And I knew I could find another cause for my symptoms.

He held my arm gently. “Whatever it is, we’ll get through it, babe,” he said at last.

His neutral response enflamed me. He did not believe the way I did. I saw it in his eyes, heard it in his voice. He accommodated my assertion by not disagreeing with me. And yet, his touch, unfiltered by his mind, reassured me. I knew he would support me in whatever I chose to do, but he did not believe. He would stay with me throughout the struggle, but he believed the neurologists, not me. I had to prove him wrong too.

Boiling, I pushed away from the table and did my best to stomp upstairs to my art room, even as I pulled on the banister to support my failing legs. He could clean up the dishes—alone.

I had to release something, and I didn’t want it to be at him. I started drawing a fire to match my anger. My anger cooled as I drew a bird with a blue head and an orange and green body leaping from the fire. The bird’s wingtips pointed at the sky, ready to beat downward with a powerful stroke and launch itself from the all-consuming fire licking at its claws and tail feathers. It sought the reassuring freedom of the sky. That’s what I am, I told myself. A Phoenix. That’s what I’m going to do. I’m going to find a way to fly out of this hellfire.

∞

In the unwarmth of the winter sun descending toward the western mountains, the aroma of lemon tea fills Ilene’s space. She cups the mug of hot tea in her hands for its heat as she slippers through the main floor of her home, asking unanswerable questions. How much longer will I walk on my own, how much longer will I enjoy the beauty of this home, this life?

She pauses to gaze at last year’s anniversary present. The large abstract expressionist painting of dancing horses in reds, whites and blues hangs above their bed. The free-spirited, vibrant life it celebrated then now mocks her future.

“I will celebrate the moment,” she says into nothingness, hoping the strength of her voice impregnates the desire with more vitality to thwart the attack on her body.

She moves a few steps, leans against the doorway of her office and surveys her workspace. A thousand sand play figures she and her husband collected for her art therapy practice line two walls. Her small teak desk, its bookcase cluttered with books and mementos, an office chair and a love seat create a cozy atmosphere. Below the large window overlooking the rocky, snow-and pine-covered hillside, the sand tray her father made for her so many years ago sits ready for use.

“I love my work,” she says aloud, hoping unknown gods hear her plea. She loves the travel, the laughing and confronting, the dancing in the moment with her clients, partners, and students that leading workshops affords her.

She sees herself as a prodding pixie who, at a moment’s notice, can become a fierce lion, challenging people to confront their personal gremlins. The work gives her money to spend on art and gifts from upscale boutiques for herself and her family and friends.

She paces the main floor of her home. Her eyes linger on the art she and her husband collected over the years. Tears threaten as she recalls the debates they had as they blended their tastes into a satisfying whole.

How long will my feet glide across the polished oak floor, carrying me through the kitchen with its birch cabinets and black granite countertops beneath windows looking out on pines shrouded in snow?

As her tea cools, she settles at the dining table to look past the glowing rosewood to the gray storm clouds gathering in the sky. Snow blankets and simplifies the forest between her and Windy Peak to the south. Her musings turn bitter. White on wretched white.

“What the fuck,” she mutters, trying to shake herself free of the ebb and flow of the storm swirling against the security of her frangible windows.

Ilene

My tea had grown cold and I had to do something. This is crazy and fucked, I thought. There’s got to be something I could do. I turned to my bookcase of psychology and self-help books to find an answer, any answer. I found Heal Your Body by Louise Hay. Hay claimed that the probable cause of ALS was an “unwillingness to accept self-worth; a denial of success.”

“BULLLL SHIIIIT!” I slammed the book closed and threw it at the floor. I loved where I was in life. I liked myself. I was comfortable with myself. I enjoyed and celebrated my success and had a sense of confidence and self-worth like never before. That pretentious bitch didn’t know shit about ALS. No one did.

As my anger grew, I searched my memory to find a way to release my fury, to keep it from consuming me. I retreated to the upstairs bedroom. Tasha followed me, but I closed the door against her—and everything else. I drew the curtains together to create a cave.

I knelt on the bed and grabbed a corner of a pillow in each hand. Throwing my arms above and behind my head and I felt the pillow bounce against my back before I whipped it overhead, slamming it toward the bed. WHAP! Again. THUNK!

A voice in my head said, Make sounds. Loud sounds.

“Fuck this!” WHAM!

“Fuck this!” SLAM!

“FUCK THIS!” SLAM!

“Its not fair! Not now!!” THWACK!

“Why ME?” WHAP!

“Fuck this shit!” THWAP!

“I DON’T DESERVE THIS!” WHOMP!

“I DON’T WANT THIS!!” SMASH!

“FUCK!” WHACK. “FUCK!!” WHACK! “FUCK!!!” WHACK!

Tears flowed freely as sobs muffled my shouts. Over and over I swung the pillow over my head and crashed it into the mattress.

My arms grew tired. Even so, I wasn’t finished.

I lay on my back and flailed my heels into the mattress. KICK, KICK. Sob. KICK, KICK. Sob. KICK, KICK. Sob.

AAAARRRRGGGGHHHH.

It felt good slamming my legs down with powerful thrusts.

Time melted. I was lost…and exhausted. My face flooded with tears and I tasted salt and snot on my lips. Strength left me. I didn’t move, didn’t fight.

I sank into a quiet, quiet peace.

I didn’t feel anger anymore. I didn’t know what I felt. Relief? Resignation? Numbness? Acceptance?

My mind settled into an unfocused calm.

As quiet as death itself.

Bane

For the first time the woman sees me. She sees that I destroy by corrupting a body. She can’t know if I will be slow or fast. She can’t accept that I will strip her of all control of her muscles until she suffocates or dies from heart failure.

The woman doesn’t understand me. Her tantrum weakens her defenses. Her demand for vigorous movement stresses her irreparable motor neuron cells. It makes them more vulnerable to me. I attack. A newly short-circuited section of a nerve flutters a muscle in her leg.

I will bring her to Death trapped and bound inside a prison of bone and flaccid flesh. She will meet Death in one way only: as a desperate, active, imaginative mind confined inside the coffin she calls her body.

Hope does not disappear all at once. It splinters into smaller, sharper pieces that may cut or console. At this point, Ilene wasn’t ready to relinquish it. We just hadn’t yet learned that hope itself can take many forms, not all of them kind.

When one’s body unexpectedly begins to fail, one’s world rearranges. The familiar disintegrates into uncertainty, and every breath may become defiance or defeat.

This story began when my wife, Ilene, was diagnosed with a terminal illness. But it is not only her story. It belongs as much to the disease attacking her body as to the spirit that refused to be conquered. Here, each has a voice: the husband who witnessed, the essence who prevailed, the spiritual guides who whispered support, and the entity who named itself Bane.

What began as a struggle of flesh became a movement toward freedom, one that transformed my understanding of what victory means.

This is not a tale of tragedy or even grief, though loss runs through it. It is the space where contesting physical and spiritual essences meet, and where surrender, not conquest, becomes the truest measure of triumph.

VICTORIOUS: Dancing with Dying

by

Nicholas King & Ilene Kouzel

TABLE OF CONTENTS

PRELUDE

MOVEMENT I: DIAGNOSIS & DENIAL

MOVEMENT II: ACHIEVING ACCEPTANCE

MOVEMENT III: TRANSFORMATION

MOVEMENT IV: FINALE

EPILOGUE

PRELUDE: Chapters 1 & 2

CHAPTER 1

I am not Death. But I am acquainted with him. Intimately. We are different, Death and me. He is neutral, indiscriminate. Not I. Death takes everything in its time. I am selective, very selective. Death has no passion. Me, I am subtle, sly in my approach, voracious and merciless in my conquest. I permit no relief, no hope for my victims.

Humans fear Death. They call him the Grim Reaper. They are wrong. The work of reaping is mine. Death merely gathers the chaff that remains. My conquering scourge renders all helpless, hopeless, and dispirited before I deposit them, sapped in body and spirit in Death’s boat.

Of the boat’s destination, I know not. Nor do I care.

Of the stories that follow, my conquest alone reveals the truth.

Winter

As light as the snowflakes kissing her cheeks before she launches herself from the top of a diamond ski run, I awaken—ravenous. I break a link in a DNA strand and launch my attack. I start my siege deep within the woman’s cellular structure. I subvert a chromosome and begin perverting the myelin sheath protecting a single motor neuron cell. She can’t detect me, not yet. From this instant forward I am her constant companion. I feed on the myelin sheath around the cell. When I have eaten enough, the cell will touch the surrounding muscles. The cell’s contact with muscle will stimulate it uncontrollably. The neuron will lose control of the muscle. Eventually I will kill the cell and move on. The muscles, no longer stimulated, will begin their slow, inevitable dissolution into ineffectual, shapeless pulp. As I defeat the body she wears with such pride, I will crush her spirit. Such will be my inevitable victory.

But I get ahead of myself.

Spring, Summer and Fall

Unnoticed through spring and summer I rise. I reveal myself slowly. The first time the woman notices my existence is late summer. She and the husband bicycle through France with a group of friends from her life coaching community. She loves her trim, athletic body and always keeps in shape with aerobic workouts. She lags behind everyone, even the chubby out of shape women on the ride. Often the husband drops back, grabs the back of her saddle and helps push her up a hill. Her cheeks turn red with exertion, embarrassment, and humiliation.

One evening, in the privacy of their hotel room, tears flood her green eyes. “What’s wrong with me?” she cries out to the husband. “I can’t keep up.”

“We haven’t been working out for the last six months, since our move to Colorado,” he says. “You’ve been traveling so much you haven’t had time to exercise like you usually do.”

“Well, I better get back to it, so I’ll be ready for ski season,” she says as she dries her cheeks.

Winter

By the time ski season returns, the woman has forgotten her frustration in France. She only remembers the joy of vacationing in a land of art, magical castles and fine food. She thinks her workouts strengthen her legs. She doesn’t know that the rush of adrenaline she feels on a ski run masks the weakness I inflict within her legs and feet. The lifts between runs give her legs ample time to rest and rebound. At the end of the day she thinks her legs, though tired—just like always—are strong. She is wrong.

The woman doesn’t know that my corruption constantly assaults her body. Not yet. Soon my power over her life will seep into her consciousness. She will tremble, frail and fearful before me.

CHAPTER 2

Spring

Bane

For the first three months of the year all the woman notices is that she tires more easily. She attributes her weariness to a demanding schedule of teaching, coaching, and adjusting to the altitude of her new home in the mountains above Denver, Colorado. The move had been a big change from living at sea level in San Diego. She lurches forward to get off the couch yet blames her awkwardness on the soft leather cushions. It isn’t until late April, during a workshop she is leading, that she glimpses my attack.

Under curly blonde hair, her green eyes sparkling with a pixie’s mischief, she teases a woman in the front row. “Come on,” Ilene says, “play with me.”

Ilene

I crouched frog-like in front of the female student. “Let’s play leapfrog.”

The audience laughed as the student leapt over me. When I put my hands on the trainee’s back and leapt over her, I felt an odd weakness in my legs or maybe it was my feet. I didn’t have my automatic and customary spring. The trainee sagged a bit under my weight.

Little alarm bells tinkled in my mind. Could I be too heavy for her? Is there something wrong with her? Is it me? At 105 pounds, that’s not likely.

I jumped two more times, then abandoned my intention to leapfrog across the room. A couple of leaps were enough to illustrate that coaching a client was a series of interactive and supportive steps between the coach and client that would lead toward a client’s goal.

Mystified by the experience, I consulted with my nutritionist after I returned home.

“I just don’t seem to have the same amount of energy I used to,” I told him matter-of-factly, masking the unease growing inside me.

He asked me to do blood tests for chemical imbalances. The results indicated that I had some weak adrenal and immune system functions, and that I was gluten and casein intolerant. He recommended a gluten and casein free diet and supplements to boost my energy.

I didn’t think it was a big a deal.

Summer

Bane

At a lunch break while leading a workshop for new coaches in Minneapolis, the woman walks a few blocks to a restaurant. She notices something odd in her gait. It is a little like a shuffle, like she is dragging her feet a bit, like her shoes are too heavy…or something. It is odd, yet not alarming to her. Later she describes it as a “hitch in my get-along” to the husband.

She is more puzzled that she can’t identify what isn’t working properly. She chalks it up to being tired from her travel schedule, or not working out enough. She pushes a haunting suspicion that there is a serious wrongness in her body into a corner of her mind. Could it be menopause? Maybe it’s because I’m fifty-three? Her questions reflect her ignorance of me.

Suspicion lurks as deep in her subconscious as I skulk in her body.

When she gets home, she nudges the husband out for more frequent walks. She hopes exercise will revitalize the weakness growing in her legs. I thwart her desire.

“Nick, we go out on these walks, but I still feel weak when we get back.”

“Probably the altitude,” the husband says with a dismissive smile, “I still feel it too. We both need to work out more.”

Of course I know better.

∞

In July, as Ilene, Nick and Tasha, their white German Shepherd, return from a walk, Ilene consciously moves her legs up the hill to their home. The surprise of thinking about moving her legs makes her acknowledge her difficulty in climbing the hill. She notices she’s been walking with her arm tugging on Nick’s shoulder while his rested lightly on hers. Fiddling with the longish graying hair at the nape of his neck and, hiding her distress behind an impish grin, she says, “Hey, Nick, pull me up the hill, I’m too tired.”

He laughs and reminds her about how well she skied diamonds at Breckenridge in January. He plays along, grabs her hands and tugs her up the hill.

She smiles to mask the start of a nagging fear. His pulling her forward eases the strain on her legs, forces her to admit, “I don’t think I’m going to be strong enough to ski next season.”

He doesn’t believe her. He knows she always looks forward to ski season. That was a big part of the reason they moved from San Diego to Colorado after selling their business. Nick smiles back, “More exercise is what we need. Why don’t you work out on my NordicTrac more when you are home.”

Ilene grimaces. “I did. I just don’t like it. It’s too boring.”

She doesn’t tell him about her growing suspicions of wrongness. She has no proof. Simply climbing up and down the stairs at home becomes a chore. It doesn’t seem like proof to her. Not yet. It just proves she’s out of shape.

“We need to get out more,” she prods. “We need to walk around these beautiful mountains we moved here to enjoy.”

He nods his head in his noncommittal way as he pulls her up the hill and Tasha trots ahead, chewing on her ball.

The following week Nick drives them up a dusty mountain road toward Guanella Pass. Ilene had remembered a meadow where she wanted him to make some portraits of her for a movement workshop she wants to create. Midafternoon clouds threaten rain, so they work quickly. She takes her shoes off to connect to the ground. Free to move as she pleases, Ilene dances in a flowing white dress and a wrap of sheer white fabric that catches the breeze as she plays, twisting and turning her body and arms.

Ilene digs her toes into the soil, feels and gathers energy from the earth and begins to twirl. The light breeze lifts her sense of freedom and grace as she stretches toward the distant mountains and sky. She revels in the sensuality of the cool air and the caress of delicate fabric against her skin.

Nick flows around her, joy written on his face as he connects with her emotions and makes images of her movements. Camera in hand, he dances with her, hoping to reveal her essence and changing moods. He will savor the memory of this last free dance for the rest of his life.

Ilene

The next weekend I was in Chicago leading another workshop. I went to my co-leader’s room to do a light workout with her. Nothing strenuous, just a few stretches and aerobics. When I confessed how my legs had felt weak, Melanie suggested a leg strengthening exercise where I would place my back against a wall and slide down into a sitting position, forcing my thighs and calves to carry my weight. Nick and I did the same thing to prepare for ski season.

Only a few seconds into the exercise, Melanie said, “Look how your leg shakes.”

I looked down. It wasn’t my whole leg shaking. It was more horrific. Different muscles in my thigh roiled beneath my skin like fire ants scurrying underneath a handkerchief.

Melanie counted the seconds. I was ready to collapse at twenty ticks. I forced myself to reach the goal of a minute. By then my whole leg shook. I crumpled to the floor.

“How did I get so out of shape?” I blurted.

I watched Melanie study my legs. She must be wondering about it too. My legs, lithe and sinewy, were so much lighter and more athletic than hers. How could she have done the exercise with greater ease than me?

“Lack of exercise,” she concluded. “We can’t let up at our age, you know. It’s harder to get back in shape.”

“Yeah, I know,” I said. But doubt and suspicion mounted in my mind.

Bane

I despoil the woman’s body—confuse her mind. She tries to compensate by overloading both healthy and damaged nerves with exercise.

Back home, at night and in bed, she feels her right thigh twitch involuntarily. It is a signal of my conquest. It passes after a few minutes. She comforts herself with the notion that her body suffers from too little exercise. She vows to change her routine.

When she mentions the shaking in Chicago to the husband he says, “The same thing happens to me if I haven’t exercised those muscles for a while. More exercise will correct it.”

The woman senses me. Something doesn’t fit and she can’t put her finger on it. Working out always rewarded her with greater strength. That is not happening now. She questions whether this is the agile, responsive body she knows and loves. It is not.

Still, she isn’t afraid. Yet.

She does not yet know that I eat at the sheath guarding her motor-neuron cells. She does not know how I bare the nerve cells to the muscles. She does not know that the twitching signals my advance; that the nerve is over-stimulated and will die. She does not know that her weakness and weariness are not because of unresponsive or inadequate muscles. She does not know I am killing a cell. When the signals no longer get through to stimulate her muscles, those muscles will atrophy, become flaccid and useless. She does not know how hopeless I will make her life. No, not yet.

She will learn.

Reflections

Years later, I see that Ilene’s death was not an ending but a distillation. Her body yielded, but her presence became less bounded, more diaphanous.

In writing Victorious, I discovered that the physical and the spiritual are not opposites. Rather they are interdependent vessels for learning, each shaping the other. Poured together, they create a single radient essence: an alchemy of transformation.

If there is a lesson, it may be this: that surrender is not defeat, that transcendence is not escape, and that luminous victories are often invisible