Have a vision not clouded by fear. –Cherokee
Ten years ago. Summer. My dear friend Ali and I drove out to Pittsboro to a one-of-a-kind art exhibit at the abandoned textile mill. Several local artists had come together to fashion pieces specifically for display in the ancient, cavernous space where for decades clothing labels had been spun out of intricate sewing machines outfitted with tiny spools of thread in every possible color. The artists had worked in the space for weeks, crafting ideas inspired by the old building. The show was called, simply, “Loom.”
Some artists integrated “found art”—objects left behind in the once-busy massive workspace. The first installation that grabbed my attention was housed in a long divot in the wood floor where one of the large oak planks had gone missing. The absent plank formed a sizable trough whose borders were softened by the raw blond untreated wood beneath. A long shaded set of bulbs, hung from long wires affixed to the ceiling beams, lighted the trough’s contents, encouraging the observer to kneel down onto the dusty floor—where the imprint of years of work could be vividly felt—and examine them.
There were the tiniest metal spools, almost doll-sized in their delicacy, still sporting bright, unused lengths of thread. Unidentifiable detailed machine parts, little twisted scraps of metal whose mysterious utility slowly came into focus upon the closer, careful scrutiny the piece beckoned. Feathers. Small fur-clouds of obscure origin. Tiny bones. Scraps of paper in official shades of blue, yellow, and pink. Bits of wire. The kinds of objects in which a child finds beauty and mystery. Their arrangement in the trough, though, revealed the artist’s understanding of shape, of balance. Of the eye.
A small typed card read: “Artist: Kimowan McLain.”
The next piece that stopped me in my tracks was a curved shelf, painted a light teal and sporting hundreds of small square cubbyholes. Inside each cubby was a tiny toy soldier, hunched over and holding a gun. Every gun was pointed at a single toy soldier who stood upright, alone and empty-handed, in the center of the circle of bare floor described by the shelf’s wide curve. A tracklight made his plight the more naked and awful. “Artist: Kimowan McLain.”
The final piece of the show was, to me, the most breathtaking. On a tall metal table, reaching up to about heart-level, rested the velvety gray body of a dead moth. A very bright light, very high up, shone straight down like an interrogation. Directly over the moth, at the end of the longest and lightest string imaginable—I learned later it was strands of his long, black hair, tied end to end—floated the body of a dead wasp. Tied to a ceiling beam, the string holding the wasp was so light it moved with every shift of air, so that the feathery black and yellow body at first still seemed to be alive, hovering over the husk of the moth. The wasp’s sharp shadow played an endlessly shifting pattern over the slightly wider shape beneath. Two bugs, dancing in death, brought together by a bit of innovative light and suspension.
“Artist: Kimowan McLain.”
Hearing my exclamations—“This Kimowan guy is the real deal!”—a mutual friend pointed out the tall, handsome, vaguely Asian-looking man I had spotted several times coming in and out of Weaver Street Market. We had exchanged curious glances a few times, but he always seemed to be on his way somewhere—a nattily dressed newcomer with a gentle expression that belied the sharper lines of his cheeks and lips. Observant, attentive, slightly obscure…the qualities I had first glimpsed in his face became real that night, not just the idle guesswork of an irrepressibly regular Weaver Street customer. And I made a new friend.
Over the next few years, Kimo (an affectionate name bestowed by our mutual friend, artist Tori Ralston) and I enjoyed a warm connection, fed by regular parties at Tori’s (my neighbor on High Street in Carrboro), meals at the Weave (our eternal hangout), his fire-building know-how (of course by this point I had learned that he was a Cree Indian—his term—from Cold Lake First Nations of Alberta, Canada), and our shared love of the arts. When he found himself in a summer romance with one of my closest friends, Claire, the three of us took to each other as though we had grown up together. Trips out to that apocryphal and undeniably paradisiacal swimming hole, Paradise Lake, were richly appointed with constant lapses into absurdity—the three of us seemed to at times share a single, and very silly, brain—long detailed breakdowns of our respective aesthetics, and lots of fresh crunchy apples from the trees on Thom Road.
By this time I had also learned that the bare spot at the back of his skull, mostly covered by his straight black ponytailed hair, was not, as I had half-consciously assumed, the growing bald spot that is the lot of so many men of a certain age—but a permanent scar left by the heavy dose of radiation he had received when diagnosed with one of the rarer brain tumors, known as oligodendroglioma, more than ten years earlier. I picked up facts along the way: he had been diagnosed at age 29. His head had been cut open and the tumor removed. He would never grow hair in that spot again.
Despite being a semi-regular smoker, Kimo seemed in the best of health and had no discernible limitations as a result of this radical illness. His romance with Claire did not last, but the deepening of our friendship did, and so when he started feeling symptoms again in the summer of 2005, I was one of the few people he spoke to about it. He didn’t often disclose much about his fear of the tumor’s inevitable reappearance—even to me. I didn’t even know enough to be properly alarmed when he phoned me from his usual summer sojourn to visit relatives in Canada. He sounded worried but I had to press him to tell me why. His left hand felt numb, he said. And there was an irregularity in the lower left corner of his field of vision. He should drive home, I said. Get a scan. I still viewed him as somewhat infallible. His steady sensibleness, quick intellect, and dazzling creativity—the gifts that had enabled him to broaden his life so dramatically beyond the scope of its humble origins—gave me to believe that he was the best judge of what he needed.
However, on his drive home he kept calling. He didn’t feel right. I entreated him to keep driving, not knowing how scared he was to do exactly that. His interrupted vision and the numbness in his left side were irregularities he hadn’t felt since the tumor was first diagnosed. Part of him—a big, meaningful, hopeful part—didn’t want to know that the tumor was coming back.
Finally he got home. His close friend Laena showed up to accompany him through the scan that revealed new tumor growth, the certain need for surgery, and the possibility of more follow-up treatment. The general timeline for the relatively slow-growing oligodendroglioma is: the second surgery tends to happen eight to ten years after the first. The third surgery two years later. The fourth (if it happens at all) after another year or less. The overall life expectancy for someone with an oligodendroglioma is ten to twelve years. Kimo was in year thirteen.
Happily, this surgery was, relatively speaking, a breeze. He had a craniotomy (opening of the brain cavity) and full resection (removal) of the tumor. Coming out of surgery he had no apparent paralysis, loss of cognition, or personality change (always risks in any kind of brain surgery, illness or injury). His stitches took some time healing—the irradiated skin from years before was technically partially dead and at risk for such complications. His head in fact did start leaking CSF—the cerebrospinal fluid that circulates around and cushions the brain and spine—and he had to be readmitted to the hospital for a lumbar drain, a painful 5- to 10-day ordeal where they pierce into your spinal column to drain the fluid and ease the pressure on the wound. Laena had left. I went with him to the hospital and checked in daily. Within a few days his head stopped leaking. He could go home.
The next two years were magical. Kimo introduced me to hoop master Jonathan Baxter, who within the year would become the person who most transformed my life as an adult. Kimo had already gotten quite fascinated with the hoop himself. Even though I had already developed a from-afar crush on Baxter, it was Kimowan who persuaded me to try his hoop class. He is the reason why I actually tried hooping—because despite my crush, I had zero intention of actually trying to hoop myself. Though the surgery set Kimo’s hoop practice back a bit, by the fall he had started dropping in on Bax’s backyard practices. I sheepishly showed up once—knowing that Baxter already had a girlfriend had interrupted my class attendance (feeling stupid will do that to you) but I couldn’t resist Kimo’s invitation to Baxter’s house. That was our first practice together, the three of us.
Luckily, by the following summer, Bax came to his senses and broke up with the girlfriend, and the three of us started hanging out all the time. The backyard practices immediately became a touchstone for me. The sweetness of dancing in the sun with these two amazing men broke open the world for me in unprecedented and wholly unexpected ways. I was already 36, unaware that my ideas about life, art, and creativity could change so much so fast. Our daily two-hour hoop practices—often followed by deep conversations that were nearly as long as our practices and explored not only art but philosophy, spiritual tradition, questions of self and soul—began to turn up the soil of my unconscious. I truly experienced life anew through this full-body creative expression. And in his dance Kimo returned to a state of health and strength that was even more astonishing considering he had lain with his skull buzzsawed open only months before.
By the summer of 2007, Kimo’s hooping and health seemed to be steadily on the rise. I reminded him occasionally to go in for the brain scans that would keep him aware of the state of the tumor. Just so we would know what was going on. Despite knowing the well-established facts about his type of tumor, none of us really, I think, expected it to come back so soon. When there is too much light to see even a hint of the Shadow, it’s easy to believe what you want to.
It was early July. We were days away from hosting our first-ever Hoop Path Retreat. Kimo was stoked. We had workshops and parties, jams and chill time worked out with our guests, online hoop friends who would become real only in a matter of days! Kimo went in for one of the routine scans. Baxter and I ran into him just afterwards, at Weaver Street. “The tumor’s growing again,” he said. “They want me to come in and have surgery. As soon as possible. I’m going in on Monday.” The retreat started on Thursday. That was the day they were planning to operate.
Walking back to the car with Baxter, I fell apart for the first time. This was the first time I felt real fear. Kimowan was now a part of my closest circle, the one that feels like family—that is family. What was going to happen to him now?
The next three months were a nightmare that was really happening. Kimo awoke from the surgery that Thursday night. Laena had come to be with him day and night for two weeks. I left the retreat guests—blissed out to finally be together, but deeply worried about this man who meant so much to our small, close hoop community—and came down to the ICU to say hey to him. The first thing he wanted was to show me that he could still make a peace sign with his left hand. Except, he couldn’t. He couldn’t move his left side at all. He was flying high on painkillers and pretty blissed out himself. Laena was crying but smiling. We were both trying to smile at him and mirror his irrepressible happiness…for now. Just for now. This is the moment in my life when being in the present began to reveal itself as being of truly superior importance to anything. Everything. Inside, I was as still as a stone. My friend, my dancing brother…not to dance again? Not to feel the joy of his body again? No…not to him. Not to him.
I visited him every day, often twice or more. His head was leaking spinal fluid from day one. At first, the doctors were in denial. The back of his neck was wet. He couldn’t walk. A few days before he and I had been hooping under the shelter at Carrboro Town Commons while a warm rain fell. I wasn’t even worried. The last surgery had been a breeze. He wanted me to cut his hair. It was all wet. His head hurt. I asked a nurse for some help. An hour passed. I asked again. Another half an hour. For the first time in my life I raised my voice to a professional person. “HE. NEEDS. A PAINKILLER. NOW.” I walked away hot with anger. The hospital is so big and so complicated. And so many people need help.
The next few weeks were a terrible regurgitating cycle of lumbar drains, unending spinal fluid, and, too often, unbearable pain. I would sit beside him and just witness him going through it. He was on the highest safe dosage of painkillers, and, too often, it only brought his pain down from 10 to 9. But sometimes the pain would go down to 8, or 7, or 6. And we would eat Smoked Cheddar popcorn and Loco Pops. And laugh. We could make each other laugh, still. I don’t need to believe that Jesus was raised from the dead. Our real laughter under that shadow of pain and death was a miracle—a true miracle, made of nothing but humanity.
From the beginning, Kimo’s happy eagerness to relearn how to reach, grasp, stand, and walk again humbled me beyond any power I possess to describe. Even during the crushing cycles of pain, he readily leapt on any window of relief to go up to Rehab and repeat tiny efforts against wooden boards, straps, and pulleys. Perhaps Rehab’s wealth of pretty female therapists didn’t hurt either. I wish I could remember the first time we met Antje, the six-foot-tall German beauty who impressed us all with her rare combination of quiet patience and sly humor. But regardless of which energetic therapist was aiding him, Kimowan’s readiness to learn, to keep trying over and over again movements that he could perform without thought only weeks prior, shifted something deep in my heart. It is possible to look towards each new moment with curiosity, openness, and a willingness to learn. I see a strong, handsome man in the prime of his life, absorbedly pressing his left forearm, strapped to a board, an inch or two out, and back again. And out, and back again. And out, and back again. And he smiles. “I couldn’t do that yesterday!”
It was in the middle of this incredible three months when I saw death brush so close to my friend I thought he might not make it back at all. The still-open and leaking incision caused his spinal fluid to become infected—bacterial meningitis, a directly life-threatening condition. A massive seizure followed by 3 days of total unresponsiveness in the ICU alerted the medical team that the infection was well underway. In the subsequent days I saw my friend lose his will to go on for the first and only time. With his pain worse than ever, and the antibiotics seeming to have no effect, he looked at me and shook his head No. “I don’t want it,” he said. “I don’t want it anymore.” Meaning, life.
He went in for additional surgeries: two skin grafts, followed by the real last-ditch effort: removal of the detached piece of skull that had been sawed out (for the third time since his diagnosis 15 years before) for the tumor resection. The reasoning was that the piece of bone was offering too much opportunity to the ongoing proliferation of bacteria in Kimo’s spinal fluid. So, out comes the back half of the right side of his skull. Gone. The wonderful plastic surgeon Clara Lee once again stitched up the hole in Kimo’s head. And finally, blessedly, miraculously, for the first time in more than two months, the infection began to recede. The pain, too—increment by precious increment. And in early October, the spinal fluid finally stopped leaking. And he was free to come home.
I couldn’t know at that point how much more my friend would inspire me to live a different life. I had already never seen anything like his walk back from the dead. Resuming regular, cheerful visits to rehab in his last several days in the hospital, he had achieved sitting up, standing (with support), and, in the final few days, taking steps with a walker. My friend, standing upright again. The same person who had looked at me and shaken his head No: I don’t want it. Standing, and smiling. “Annie! Check this out!” Baxter and I chilled with him in the rehab room. This was something we might never have dared hope, but here he was, coming home with us from the hospital. We were trained (barely) in how to help transfer him from his wheelchair seat. He was gaining strength, seemingly by the hour. In two weeks his brother Luther would arrive, and they would move into a sunny apartment just a few blocks away from us. A new life. Kimo was already talking about his next art projects.
His creativity found a brand-new field in his own traumatized body. Along with guided at-home physical therapy with trained pt’s, he began to explore and develop original exercises for himself, taking what he knew and following his creative instincts—which had already served him so well in this life— designing exercises tailored specifically to the conversation he felt was going on between his brain and his body. He called this Kimo-chi. On medical leave from teaching art at UNC, he practiced for hours each day.
I still visited him daily, usually in the afternoons. He’d show me his latest “moves,” excitedly detailing any new sensation he felt or range of movement he had recovered—no matter how small. One night, Baxter and I were over for supper, and he stood in the middle of the floor. “Watch this,” he said. And slowly—slowly—he raised his left arm all the way up to his shoulder. Physiologically, recovery of arm and hand movement trails that of the feet and legs. He hadn’t raised his arm that high in at least 9 months. We shouted and clapped. I’ve never known any victory that tasted sweeter.
The weeks and months that followed his return from the hospital are among of my favorite times in life. His delight in recovering, bit by tiny bit, the movement in his body—eventually hooping again! to our indescribable joy—and his certainty that he would continue to recover movement long after the 6 months of recovery typically predicted after brain trauma, brought me back day after day to the meaning inherent in effort itself. In belief itself. In the present moment. Kimo never spoke of the movement he’d lost. I would have. I would have cried and screamed so hard that everyone within miles would have felt the force of my sorrow. And I’m not saying I would have been wrong for doing so, or that Kimo didn’t have his own private grief process. Grief is incontestably one of the most natural and normal responses to loss. What I am saying, though, is: He didn’t speak of it. He spoke with joy of every tiny movement he recovered.
Exactly one year, almost to the day, after he went into the hospital and almost died, Kimo walked from his home in Carrboro to The Carrboro Town Hall to meet and hoop with the guests at our 2nd Hoop Path Retreat. It took him two hours to make it about half a mile. When he got there—wearing his nifty madras shirt, porkpie hat, and the white sneaks we got at University Mall—he was sweating, exhausted, and elated. After sitting and resting a while, he got up and swung the hoop around his waist for a few minutes. It was another miracle: one made of plastic, the mysterious power of the human body, and a mighty fund of hope.
And this is the point in the story where I realize on yet another, even greater scale, how significantly my friend’s capacity for hope surpasses my own.
The 6-foot-tall German beauty known as Antje, Kimo’s speech therapist in the hospital, had become interested in hooping and slowly but surely came to be a part of our little hoop group. She also visited Kimo occasionally, joining him at home for tea. I thought this was really sweet and of course knew him to be so interesting and likable—plenty of his therapists really dug him. He finally confessed his crush to me, smiling like a boy in grade school. Inwardly, I flinched. Man, I hoped he wasn’t really losing his heart to this gorgeous young woman who could obviously take her pick from any number of men (or women). I didn’t want his already gargantuan challenges to increase by the formidable margin of rejection. I hoped she wouldn’t unintentionally lead him on.
But they remained pals, and soon enough Antje was joining us for dinners with the small group of friends who gathered regularly to research and discuss Kimo’s current and future treatment options. He was taking oral chemotherapy and enjoying a best-case-scenario outcome there—no additional tumor growth more than a year past resection. Still regaining movement, too. And his cognition was excellent. He was ready to start teaching again.
One night, Antje and I were the last ones left at Kimo’s. It was past midnight. She and I were sprawled on the floor looking at art books while Kimo played dj. His tastes embraced Canadian soft rock of the 70s, obscure electronica, and dirty southern hip-hop with the same enthusiasm. “Gosh, I’ve got to get up so early!” Antje eventually lamented. “What time?” I asked, idly. “Let’s see…5:30? 6? I have to be at work at 7.” I looked at my phone and noticed it was after one.
Hold on a second! What was she still doing here? Should I leave? She had to be up in less than 5 hours? She must like him! She must! Holy shit! In the quickest flash I saw my how tightly I had held to the ironclad assumption that she would never view him—15 years older, still partially paralyzed, and facing terminal cancer—as a potential love interest. My own bigotry took my breath away. Within ten minutes I sighed theatrically and announced that I was headed home. They smiled at me, indulgently, as I waved goodbye from the door. Thank god I hadn’t been allowed to hijack the party!
Watching love blossom between this extraordinary woman and my extraordinary friend was another volume in the encyclopedic set on humility my life was continuously offering up for my examination. Her sense of the absurd not only matched but extended and heightened his. Her attentiveness to his physical limitations evoked the understanding and tenderness of a lifelong partnership. They wove their lives together—the steady, habitual shape of hers with the gently erratic, open-ended, ever-reinventing shape of his.
And they were to be married.
But today, my beloved friend and his fiancé are spending their last precious months together in a 12 by 15 hospital room in St. Paul, Alberta. The last series of tests and evaluations, started in April of this year, revealed new tumor growth in the meninges—meaning metastasis, a last-stage feature of oligodendroglioma. Doctors recommend no further treatment, just palliative care. They made the quick move up to Canada to be close to Kimo’s mother, aunt, brothers and cousins, leaving behind Antje’s two cats and a family of friends who love them beyond reason.
And perhaps it is unreasonable to lavish love on a dying person. None of us care about that, obviously. But when I visited Kimo and Antje last week, I noticed that few people who asked me about the nature of my trip were able to leave it at “I’m visiting a friend who’s very sick.” Many responded with some version of, “I hope he gets better soon!” Sometimes I would repeat, “He’s very sick.” And a couple of times I told the truth: “He’s dying.” Even if the person is utterly unknown, a complete stranger, so many of us have a hard time hearing those words. Often people averted their eyes, saying “I’m sorry,” or saying nothing.
I understand. I remember what it’s like to feel so alienated from death that to speak of it in casual conversation seems wrong. I know that most of us will become acquainted with the dying process (pronounced the Canadian way, of course) somewhere, somehow, before we ourselves become the dying or dead one.
And there were those folks who understood, and extended wishes for the peace and comfort that really can be, in fact, so abundant, available, and healing—both for those of us who are losing someone irreplaceable, and for the one who faces the end of conscious life. The thing that struck me most about my visit was the overwhelming and palpable peace I felt every moment I sat or lay beside my beautiful dying friend. He’s still here. And he will still be here even after his body is no more. Not only in his stunning body of artwork, which Antje is carefully archiving now, but in the ways he has changed us all, altered forever pieces of the world where he has touched them.
Though I might be lucky enough to physically hug my brother, Kimowan (formerly McLain) Metchewais, once again in this life, I also might not be. And, to me at least, recognition of the rare and exceptional gift of his existence need not be saved for a time when he is certain to hear no word of it. I want him to know. Kimo, my one and only Cree Indian artist hooper hero and life-expander, not merely a survivor but a true celebrant, you have inspired me in ways that would otherwise have not been possible. My life would have been less—much, much less—without you. I see you leaving and my heart breaks open ever wider to hold this fact—a part of all that is real and unavoidable in this life. I won’t have my heart stay small. You showed me how.
** Postscript: Our beloved Kimowan passed from this life on Friday, July 29th, 2011, surrounded by his family, the wonderful staff at St. Paul Hospital, and his loving caregiver, Antje.
Kimo, we love and miss you more than earthly words could ever say.