Nearly every day, my brother Joe tinkered with the world, the world he was leaving.
With a whirr, he steered his electric wheelchair to his computer and used what little ability he had left in his right hand to conjure onto the monitor pieces of the planet—a sun-haloed bee, luminous scarlet and orange-tinged leaves of a Boston ivy creeping across a wall, black tree shadows striped across a snowy lawn.
Joe spent hours on each photograph, clicking the proper controls in his photo-editing program so that the view through the camera’s lens became transformed into the view in his mind’s eye. A darkened corner became brighter, a harsh color softened, a small part of the image enlarged to fill the monitor, opening up a whole new realm. Some of these he took years ago, before his nerves deserted his legs and forced him into a wheelchair. Other pictures his family took for him. Don’t forget the camera, he reminded his wife Elke and me, as we left to walk the dog and left him behind.
I slipped the camera around my neck and took shots of whatever sparked my interest along the way—bleached-out beech leaves that were ghostly reminders of the previous growing season, bracket fungi iced with snow, a vase of dying tulips awaiting the compost heap placed next to a pair of more colorful snowshoes.
But it was hard to be a tourist of the inanimate in that Vermont countryside. We were too distracted by following the sound of a nuthatch, the trail of moose tracks in the snow, or by Leah the cream-colored Labradoodle, who romped ahead, beckoning us to hurry and see what she saw. We would chase after her when she disappeared after a deer, and when we finally caught up, we would have to continually throw her sticks so she stayed close by. We might pause momentarily to snap a picture but continue on our active walk. We did the exploring, but it was really Joe who did the seeing when we returned, drinking up each image as if it were a spring in the desert.
Joe was always the curious adventurer and some of the photos he played with were windows into that more active world. Choppy water viewed from the rim of his sailboat; ice-capped mountain peaks in New Zealand; the regular rooftops of Paris.
When we were children, Joe and I explored together. We spent our summers in Maine, where the island’s rocky coast was our playground. Not having sand to build sand castles with didn’t stop us from enjoying Maine beaches. Tidal pools were like treasure chests. We would run from one pocket of water to another in search of the jewels of nature that were inside. Because Joe was the much older brother whose legs were much longer than mine, I was always catching up to him to see what he saw. Look, here’s one! Joe would squeal when he found a starfish the color of amethyst. I scampered over the rocks, dodging glistening globs of jellyfish. I giggled when the starfish he put in my palm tickled me with the prickliness of its suckered underside. Another time he put a small crab on my head, laughing as I frantically shook it out of my hair. Stones brightened inside the tidal pools, pink granite with lime-green streaks as contrasting as the green grassy strips that divide a highway. The water also highlighted the white concentric rings embedded in basalt the color of the sky deep into the night when no remnants of blue remain. Joe and I would stuff all of these striking stones into our pockets until the weight of them tugged at the waistbands of our jeans. We’d then skip over the cobbles to gather prickly sea urchins and sand dollars scattered there like candies sprayed from a burst piñata. When we returned home, we would compare and swap our finds as if they were baseball cards.
Years later, it was disturbing how quickly Joe’s body petrified, akin to a character from a fairytale given a transformative curse. When Joe entered his fifth decade, he found that his hands, which he had always been so adept with, weren’t cooperative when he wanted to turn a key or pick up a utensil. He was losing the nerves that fed his fingers the critical electrical sparks they needed to grasp his fork agilely or manipulate his tools. Soon the nerves that serviced his legs followed suit, making him fall frequently when his muscles wouldn’t contract properly.
What most of us take for granted—the ability to move our arms and legs on demand–Joe lost in just a few years after being diagnosed with amyotrophic lateral sclerosis or ALS. This disorder destroys all the nerves that mobilize muscles and let you stroll across the room, scratch an itch, turn in bed, embrace a lover, or pet a dog. Most patients die within five years of being diagnosed, often by suicide. ALS is better known as Lou Gehrig’s disease because of the famous baseball player who, paradoxically, told the world he was the luckiest man alive when he was first diagnosed with the condition.
Shards of Joe’s decline sometimes still pierce the surface of my mind: his leaning heavily on Elke while shuffling from chair to bed, aging decades once the nerves in his legs started to fail; his using the limited strength left in his one arm and hand to massage Elke’s tensed neck and shoulders; his greeting me at the door in a wheelchair, eager to show off his latest device and all of its mechanical and digital features, as if it were the motorcycle for which he always pined. I tried to be enthusiastic about it, but the lump in my throat was so big I could barely swallow. I, the runt in the family who always had to bend back my neck to make eye contact with my big brother, instead now had to look down into his dark eyes.
It was wrenching to watch each part of Joe’s body seize up over time, but I kept visiting, feeling I had to understand this new person my brother was becoming and what his limitations were in order to best help him and his family. My regular trips to Vermont to see them reminded me of those of my mother, who determinedly visited each of her grandchildren every few months when they were newborns, no matter how far away they resided, because she didn’t want to miss their first smiles, steps and words. But I was watching Joe travel closer to an endpoint rather than away from a starting point, seeing him take his last steps and hearing his last words. Nearly every muscle in my body clenched on the ride from the airport to Joe’s house as I feared what I would encounter, what new parts of my brother had withered away in my absence.
I don’t think Joe called himself the luckiest man alive. Near the end of his life the only things he could move were a few fingers on one hand and facial and throat muscles that, fortunately, let him talk and eat, when fed by others. He, who had always relished his solitude, had to rely on what he called a circus of caregivers to feed, bathe, dress and toilet him, and even frequently reposition him. He also relied on a laundry list of drugs to relieve his discomforts, as well as on his trusty and vital companion–a ventilator he sucked on rhythmically to get the breaths his lungs could no longer squeeze on their own. With a little bit of ingenuity and the aid of his old Kelty backpack frame, he and his 20-year old son strapped the ventilator to his wheelchair. Now the regular whoosh of the breathing machine added a bit of harmony to the whirr of his wheelchair.
When he first discussed the possibility of using a ventilator, Joe put it in the context of his diving experiences. You need a lot of cumbersome equipment to dive, but it’s worth the view you get from deep in the ocean. I feel the same way about a ventilator—it will be cumbersome but worth the view.
And for the most part, Joe did enjoy his view throughout his illness despite his steady decline. I was only able to visit him every two or three months, each time encountering new evidence of loss—a lifeless arm dangling by his side, the feel of his skeletal frame devoid of muscle when I hugged him, the sling needed to move him from wheelchair to bed. Each deterioration was an assault, a series of blows to my solar plexus, taking my the breath away and making me vacillate between wanting to either cower in the corner or punch back.
But Joe always seemed even-keeled and accepting, at least in the face he chose to show me. Did he mean to guide me through the end of his life like he led me through the beginning of mine? He maintained his measured way of speaking, pausing for each thought to expand. Perhaps dampened by all the drugs he took to relieve his pain and discomforts, he rarely had emotional outbursts. Wasn’t he angry and frustrated at what was happening to his body, the unfairness of it all? I asked him. Nope, he said. I never believed in a god controlling my fate. I also never thought life was fair. I’ve always just had that two-word philosophy: ‘shit happens.’
Joe even had the aplomb to give a lecture to his medical students about his disease and how it was affecting him, how its symptoms revealed the exquisite filigreed forest of motor neurons in the nervous system, even which trees had been cut down. The ultimate physiologist, Joe was still in awe of his body even when it failed him and perpetually curious about everything, even his own impending death.
When Joe was first diagnosed with ALS, I asked Elke how she was able to cope. She quickly responded, I just don’t think about the future. Was it Virginia Woolf who once said she needed to have one of the characters in her book die so others could appreciate life? Some see the glass half empty while others see the glass half full. But Joe showed us something different—how to savor each drop.
The summer shortly before Joe was bound to a wheelchair and then a ventilator, Joe’s family and mine shared a cabin on the bay in Maine for a week. Every morning at sunrise, when there was still a chill in the air, we would bundle up and sit out on the deck overlooking the bay for what Joe called our “moment of Zen.” While steam rose from our cups of coffee and crows cawed from pine trees, we would see the morning fog set ablaze by the rising sun and silently share our amazement at the golden world before us. It was one of several moments made more precious by the awareness that it was fleeting.
Just like my time with Joe.
When eventually his wheelchair confined Joe to his home, his curiosity about nature, the view outside, heightened. He had his morning coffee in the sunroom that looked onto a forest of maple trees and other hardwoods. A well-trafficked birdfeeder was attached to one of its many windows. I keep looking out at the same woods, he once told me, but it is a nice woods to look at, and each time I seem to find something new. Like that dead birch tree on the edge there. I bet some animal’s living inside its trunk and if we keep looking we’ll see it.
When we were small, Joe and I used to spend much of our free time playing in the tiny remaining patch of Maryland woods at the end of our block. We lived in a subdivision from the 1960s and, miraculously, that densely vined forest remnant didn’t get developed into another split-level home. Those wild woods were a magnet drawing all the kids in the neighborhood. We’d gather tulip poplar flowers, work together to build twig forts, and find Indian arrowheads that let our imaginations soar out of the orderly confines of the DC suburbs. I suppose the woods outside Joe’s windows in Vermont served this same purpose for him. It let him soar beyond a body that wouldn’t move, see a world he couldn’t fully experience.
But Joe seemed to see the things that the rest of us never noticed. Or maybe we noticed, but just didn’t savor. When first confined to a wheelchair, Joe said he was like someone on the observation deck of a cruise ship—he finally had the time to sit back and relish the view. I rarely had time to pause then. When you are growing a family and a career at the same time, you live moment-to-moment, life fast forwarding with no stop action. There were always articles waiting to be written, children waiting to be fed, a house waiting to be cleaned. I operated reflexively rather than reflectively. Rushing to meet work and domestic deadlines, there was a part of me that was jealous of the time Joe had to observe. Time to see the goldfinches come and go. Time to view fall emerge, one leaf set on fire after another. Time to watch the snowflakes drift down from the sky and settle on his lawn, slowly knitting a soft white shroud that muffled sound.
Joe didn’t seem to miss the segment of the world he could no longer be a part of—his lab where he ironically did research on the electrical signals that cause muscles to contract; his students at the university; the mountains he once hiked; the boat he once sailed—nor did he have a bucket list. Instead of anguishing over what he had lost or should have done, the unjustness of a short life-sentence, Joe chose to focus on what was immediately around him and to see and reflect upon it more deeply. He had no time for the superficial, no breath for meaningless chatter. You can come and visit me, he would tell me on the phone, making a point to add, but I’m not up to small talk.
The last time I visited Joe, ALS had robbed him of all movement except talking, swallowing, and sipping from his ventilator. The nights were the worst. Darkness obliterated the view outside and there was nothing to distract him from the discomfort and pain, and the anxiety of feeling trapped inside one’s own body. Elke and their two sons took turns staying with Joe during the night, repositioning him every few hours, bending and stretching his limbs. But the lack of sleep was wearying for all of them.
I don’t know, Joe said, gazing out of the side porch windows at the trees around him, his balding black hair just starting to go gray and match the light whiskers in his dark beard. Once you’ve been checkmated, what’s the point of continuing the game?
I wanted to plead with him to make his next moves so we could continue sharing our lives. I wanted Joe to be there to reminisce and chuckle over the strange soup our grandmother made when she tried to clean our father’s handkerchiefs in boiling water and they disintegrated; to revisit with him the sensation of tadpoles harvested from a Maine pond wiggling in our palms; to remember with him the man in Greece who wouldn’t take no for an answer when I spurned his advances, until Joe went up to him and said, Look, this is my sister, recognizing that the only way this man would leave me alone was if another man already claimed me. I wanted him to help me thrust out the strands of what we shared in our childhoods so that they continued to spin together far into the future. A future in which he could give me his big-brother advice, reassuring me that my mother did the best she could, that my children would get through whatever difficult stages they were in, and that there was more to life than worrying about making a name for one’s self.
I wanted all this, but what did he want? I kept my selfish thoughts at bay recognizing how difficult his life had become for both him and his family, how he was imprisoned in a motionless body and unable to make another move. But as once was noted by an ancient writer, “what cannot be said will get wept.”
“Joe!,” Elke called from the other room. “Are you making your little sister cry again?”
Joe’s situation was like the cartoon show we used to watch together as kids. It always concluded with a round black border expanding inwards eclipsing the scene until the screen went completely black and the words, The End, appeared. Joe’s ability to do and experience things was shrinking by the dark rim of immobility, but it left him better able to focus and appreciate the view he still had, like the opening in a pinhole camera. Joe put it another way. I feel like I’m watching the sunset of my life and the colors have never been so brilliant now that it’s about to set, he said looking up at the colorful mobile of a thousand origami cranes made by his medical students. A symbolic gesture, they were inspired by the ancient Asian belief that folding paper cranes could restore health. In some Eastern societies, these large birds are honored as reincarnated beings pausing on earth just long enough to help others reach enlightenment.
Years later, I try to pause each morning while sitting by the bay in Maine at sunrise. I gaze out and search for something new in the same scenery, like Monet must have done when he painted so many pictures of the Rouen cathedral. Sometimes it’s a solitary loon swimming in early morning, leaving a trail of glistening light in its wake. A seal seeking respite during high tide by waddling its way onto the shore. Any interesting tidbit of biology or ephemeral beauty that Joe surely would have noticed, if he were still with me. Peering through the binoculars to see everything more clearly, I say Here’s our moment of Zen,for both of us.
STORY IMAGE COURTESY THE AUTHOR.