Riding in a paceline, for example. Bicycle races feature teams of cyclists who, for much of the race, are grouped together in what’s called the peloton, which offers a considerable reduction in effort (up to 40%) to those riding in the slipstream of the cyclists who are out in front breaking the wind.1 Different teams will strategically move to the front of the peloton at different times, depending on the standing of the strongest rider on the team, which means that the whole large group is going faster than any individual possibly could ride. Any small number of cyclists who manage to break away from that pack must cooperate with one another by forming a paceline, or the peloton, with its numerical and aerodynamic advantage, will certainly chase them down. One day John and I went out together. We were down out of the hills and on the approach to Mystic that is relatively flat, three to four miles along the Mystic River as it flows toward the harbor and beyond. “Let’s see how fast we can go,” John proposed excitedly. “Just get right on my rear wheel and follow as closely as you can—after a couple of minutes, when I’m tired, I’ll move to the left and drift back and you’ll take the front position.” So I rode with my head down and hands over the hoods of the brakes so as to keep my body low, and tried to stay as close to his wheel as I could manage without clipping it and throwing him off balance. When he moved to the side and tucked in behind me, I was suddenly out in front, breaking the wind. It was so much harder! Protected by John, I hadn’t registered the fact that a stiff headwind was blowing in from Long Island Sound. I kept my cadence high and tried not to drop too far off the pace he had set, but before long I had to motion him forward and drift back behind. Then I discovered just how much stronger a cyclist he really was. I tried my best to stay right on his rear wheel, keeping my torso low, but I was forced to shift down into a lower gear to keep my cadence steady, and soon I was feet, not inches, from John’s wheel, and then yards, and then many yards . . . “Hey, John,” I hollered, “wait up, wait up! Wait up!!” That’s when I learned that the rider behind exerts 75–80% to the leader’s 100%. I had exhausted myself on my first “pull,” and John simply rode away from me when out in front again.
After we went through Mystic and were back inland, John proposed that we try again. “Let’s go flat out from here to the turnoff—it’s about five miles, no real hills.” “Um, uh, okay.” Off we went. With no headwind, I was better able to contribute to our joint effort, coming to the fore when John would move to the side, though he was able to sustain the lead position longer than I. I gave maximum effort, surging over rises in the road, body forward, standing up on the pedals for better leverage, pushing through the rotation at the bottom of the circle—simply willing myself not to shift down into an easier gear, and not to drop off the cadence—all the while struggling to do the very simplest arithmetic in my oxygen-deprived head . . . how many minutes will it take, dear God, to go 5 miles at 20 miles an hour, uh, 21, 23 . . . how many minutes have passed? Could time possibly be slowing d.o.w.n and d . . o . . . w . . . . n and d . . . o . . . . w . . . . . n . . . . ? How . . . Much . . . . Longer . . . . . . Then SUDDENLY John sat up, flung his hands in the air, and turned around toward me as he began to coast. “Wasn’t that FUN? WASN’T THAT GREAT?” And it was, it was really great to be playing like that with a boy, completely absorbed in the physical challenge—I loved it. I loved him.
The only bicycle race I’ve ever ridden in was with John. It was an official amateur event held in New London, a mile-long course laid out on the city streets for a “criterium,” ten times around the same one-mile loop. It happened before the Silver Streak, when I was still riding a bicycle I’d bought secondhand while in graduate school, while John rode his fancy European bike. My bike had a scratched-up orange frame, regular (fat) bike tires, a rack for carrying stuff mounted in the back, a bag under the seat with the kit to fix flats and an extra inner tube, reflectors everywhere—mine looked like the working road bike it was, not a racing machine. I took off the rack and the bag, but there wasn’t much else I could do, and I looked kind of silly lined up there with all the other competitors. My great victory was a negative one. I was not lapped by other cyclists, and thereby ushered out of the race altogether. John finished far ahead of me, after dropping me on the first turn. Not only was his bicycle “light as a feather,” as Elizabeth was fond of pointing out, but he was a much, much stronger cyclist. I knew that however much I upgraded my equipment I’d never be his equal.
In early June 1995, Elizabeth and I rode together with John in a fund-raising event for the Multiple Sclerosis Society, riding in support of Jeff, who was then serving as the chair of the Lancaster, Pennsylvania, chapter of the Society. I got T-shirts made for the three of us, white, with TEAM CROSBY written above a great color photo of Jeff, Beth, and the kids. The ride was seventy-five miles out to a college campus where we were put up overnight, and seventy-five miles back the next day. On the second day, as riders gathered to start, there was a problem with a friend’s bicycle, so we waved John off, knowing he wanted to ride hard. And so he did, joining with a couple guys in a paceline that was one of the first groups over the finish line, hours before Elizabeth and I arrived. I regard that fact as astonishing, because his abdomen was full of metastatic melanoma tumors.
In his early thirties, Elizabeth had seen him through a surgery that carved a malignant melanoma tumor out of his back, and a large margin around it, besides, before grafting skin from his thigh to cover the wound. He wasn’t supposed to survive the first five years, but he did, then six, seven, and after ten years symptom-free he was no longer on high alert waiting for it to come back. He didn’t forget about it though, and seventeen years after the surgery, when he felt enlarged lymph nodes in his left armpit, he was scared. Surgery to remove the affected nodes was “successful,” but lymph circulates throughout the body, and metastatic melanoma is a killer untouched by chemo, as he and Elizabeth understood all too well. Five years later, in August, he thought he felt an abdominal tumor, tried to talk himself out of it, felt it again, and yet again, had surgery, and started an experimental treatment using interferon/interleukin to boost his immune system, which required hospitalization every third week and made him violently ill. His oncologist opened him up again on February 14, hoping to cut out any malignancies not destroyed by the treatment, but instead discovered incipient tumors in their earliest manifestation spread all through his abdominal cavity. Elizabeth wept at the bitter irony of this fatal Valentine. John returned to the treatment. She looked for any possible advantage, willing him to survive—an organic herbal tea, a fish oil. He told her that sometimes lying awake at night without moving, he felt okay, and imagined going downstairs to make a peanut butter sandwich as he used to do. How he missed that life! As much as she longed not to lose him, he longed to live.
When we three did the MS ride at the beginning of June, he was still strong. Not for long. He continued the course of interferon/interleukin—it was his only chance, however unlikely to succeed, and giving it up was unthinkable, tantamount to admitting defeat. In late July, his physician slipped a Medi-Port under the skin of his chest, with a catheter connected directly to a vein and a port through which medicine could drip or be injected, to save John the punctures of repeated IVs. A buildup of fluid in his abdomen was becoming intolerable, so a physician inserted a needle into his peritoneal cavity to drain it. In August, his mother, Mary, came from Indiana to care for him, once again bringing food to his lips and arranging his pillows, tending him as she had done at the beginning of his life. Elizabeth and I did what we could. When the two of us, one on each side, helped him to the bathroom for what turned out to be the last shower he’d ever take, I saw how truly weak and emaciated his body had become, as the tumors grew and grew, monopolizing his metabolism. His abdomen continued to swell. We were with him down to the hopeless, helpless days of waiting for death by his bed, as the last urine his body would produce slowly dripped dark amber into a Foley bag. He was a strong man who wanted to live, and dying was hard work. By mid-Se
ptember it was over.
When I reflect on it, I’m once again astonished that he successfully completed the 150-mile MS fundraiser, riding so strongly the second day, because we all knew perfectly well that he was sick. You could already see that his abdomen was slightly distended. Sometime toward the end I learned the word “ascites,” the technical name for fluid that leaks into the abdomen when the liver is seriously compromised. As it happened, all of his organs were destined for failure, although none of us could admit of such a possibility in early June. (It’s only late in the process that you understand the arrival of dying, I’ve found.) Snapshots we took at a rest stop show the swelling. You can see the slight curve under the Lycra of his cycling shorts—there we are, nonetheless, happily eating oranges, and there’s John, looking so good, squinting against the sun and laughing. As we set off again, he discovered a broken spoke in his front wheel, so he and I stayed behind while a helpful volunteer mechanic replaced it. As we rode off together, he called out, “Let’s go!” We hammered down and overtook the others before they reached the next rest stop, much to their astonishment. He wanted no truck with death.
When my new bicycle arrived in early July, I thought first of riding with John, so Elizabeth and I planned with him to leave from his house and ride down through Mystic and back. We started off coasting downhill and then took the quiet, beautiful back road along the Mystic River, but when we got into town, he asked to stop. We sat down at a sidewalk café. He was white and exhausted. There was no way he was getting back on his bike. He called a friend, who showed up with an SUV, and that truncated ride was my last with John.
There’s a term I learned watching the Tour de France on TV—hors catégorie, or “beyond class.” It’s reserved for roads over the Alps and Pyrenees that are so difficult as to exceed the classification system used to categorize a climb by factors that include its length and degree of incline. Difficult beyond belief, difficult beyond measure.
John asked that Dylan Thomas’s poem “Fern Hill” be read at his memorial service. The speaker of the poem begins by imagining a “green and golden time” when “I was young and easy under the apple boughs,” and allows those years to emerge in gorgeous, glorious detail. Alas, the poem turns from life to death in the lush fatality of this concluding stanza.
Nothing I cared, in the lamb white days, that time would take me
Up to the swallow thronged loft by the shadow of my hand,
In the moon that is always rising,
Nor that riding to sleep
I should hear him fly with the high fields
And wake to the farm forever fled from the childless land.
Oh as I was young and easy in the mercy of his means,
Time held me green and dying
Though I sang in my chains like the sea.2
John spent many summer days of his childhood with his grandfather on the farm in Indiana where his mother grew up, and had a framed aerial picture of its acres hanging next to his fireplace. Rolling, startlingly green fields surround the barn and farmhouse with its stand of trees, but neither he nor his brother wanted to work the land, so it passed from the family. John fought against death every way he knew how, but to no avail.
Can sorrow be measured on the pain scale running from 0—no grief—to 10—the worst grief you can imagine? No. Neither pain nor sorrow will suffer to be quantified, but remain beyond compare. Hors catégorie.
9
Jefferson Clark Crosby
On January 5, 2010, my brother, Jeff, died. He was fifty-seven and almost completely paralyzed from multiple sclerosis—he could move his head side to side, but not raise it up off his pillow, and his limbs, hands, and torso had long since failed him. Perhaps he got a urinary tract infection that was too much for his diminished body to fight off, or maybe it was something else. No matter. Over the course of five days his lungs began to fill with fluid as his heart could no longer pump strongly enough to circulate oxygenated blood. For five days, his breathing grew more and more labored, with mucus rattling in every breath, until his struggle was over.
When I first learned from our parents that Jeff had been diagnosed with MS, I was twenty-seven and he was twenty-eight. Beth had a few months earlier delivered their first child, Kirsten. Actually, what Mother and Dad told me in their first phone call was that he was in the hospital undergoing tests to figure out why he couldn’t control his legs properly, a fact that was increasingly evident when he tried to move laterally on the racquetball court. He was accustomed to excelling athletically, and he relished competition. He was strong, well-balanced, with terrific hand-eye coordination. But now something was wrong. The tests went on and on, one possibility after another coming up negative. Then my parents called again to say that he was being discharged, having been diagnosed with a progressive autoimmune disease that has no cure. His immune system had begun to launch attacks on the myelin that sheathes a neural cell’s axon, down which ions pass. Myelin contains the electrical charge as insulation sheaths an electric cord. Inflammation and scarring result in sclerosis, a pathological hardening of tissue that destroys its function. Without healthy myelin, neural systems cannot function properly.
I bought a book, of course. This was in the early eighties, long before Google changed how you get information, and I knew nothing about the disease. About halfway through I stopped reading. The tone of the book was upbeat, relentlessly cheerful in the face of a recent diagnosis, belying the miseries that could await the sufferer: blindness, mental confusion, loss of coordination and strength, paralysis, pressure wounds, sexual dysfunction, urinary incontinence, bowel dysfunction, spasticity, and an early death, probably from organ failure, probably in one’s fifties. It was frightening as hell. Each individual sufferer’s course of the disease is different, and there was no way of knowing how Jeff’s would play out. Some experience an intermittent MS, whereby an attack will be followed by recovery as the nervous system compensates for what has been lost by rerouting a network, only to be followed again by another attack. With every exacerbation, function is lost and never fully restored, so the trajectory over time is inevitably, but slowly, downward. Some, on the other hand, decline rapidly and die in a few years. Some decline more slowly, but steadily, without remission. No one experiences all the horrible symptoms. Jeff never went blind, did not suffer from neurological pain, nor was he confused. To the contrary, for many years, when talking with him on the telephone, it was easy to believe that nothing was wrong. The disease in him, however, was unremitting, and with each passing day he became more ill. Even in my late twenties, I knew that “the fifties” would be upon us all too soon.
When he was diagnosed, he had just completed law school and was working a prestigious job as a law clerk to a federal judge in Detroit. Jeff and Beth started living with MS just as his daughter, Kirsten, was born and his clerkship ended. In snapshots from that time, he stands close to Beth, or cradles Kirsten, showing no outward signs of being ill. But he would stumble, or have difficulty rising from a crouch. He and Beth had before them a choice. He could join a well-established labor law firm in Detroit, at which he had clerked when still a law student, and whose partners drove Cadillacs and worked all the time, or he could take a job with a small firm—only three partners—doing a general practice in the small Pennsylvania city of Lancaster. Both firms knew he had MS. The Pennsylvania job would put him in the bosom of our extended family on our mother’s side, the aunts, uncles, and cousins with whom we celebrated every holiday, almost all of whom live close to Lancaster.
They chose the Lancaster firm, and moved to Lititz, the small town where Mother had grown up, about ten miles outside of the city. They decided, moreover, to buy from our uncle a white brick house that Jeff and I knew intimately. Built by our grandfather, 40 South Broad Street had been Mother’s childhood home. The property has a stable out back that once had housed Papa’s black horse, Prince, and when we were kids it still smelled just a little like a stable, even though long since it had been ma
de into a garage. There was a big backyard with sour cherry trees that had supplied the filling for many pies when we were growing up. Jeff and Beth packed everything into a big U-Haul truck and two VW vans, theirs and Mother and Dad’s. I had come along to help with the move, and the whole family drove our little caravan across the country to Lititz. Their decision to leave Detroit, to work for Gibbel, Kraybill, and Hess, to buy the house in which Mother grew up, and to join the Lititz Church of the Brethren where generations of our family had worshiped, was influenced by the fact of MS and the uncertain future he faced. Better to be among family, in a familiar place, working in a small firm with partners who valued fatherhood, family, service to others, and a simpler way of living. No Cadillacs. A Brethren way of life.
For years he worked 8:00–6:00 Monday through Friday and a half day on Saturday. Beth and he had another child, a boy they named Colin. Beth had an MAT in teaching and worked part-time as a tutor for students from Linden Hall, a private school for girls in Lititz. She was the homemaker, who shopped, cooked, cleaned, and took care of the children. She even ironed Jeff’s shirts in the beginning. It was clear to me then, as it is now, that Beth’s labor made it possible for Jeff to work as he did. I think those years, when his kids were young and he was still pretty able, came to have a golden glow for him as his abilities declined. How could they not? There he is in a photograph, in the glory of young fatherhood, tossing his son up into the air, as Colin screams with laughter. Or he is seated in the lemon-lime two-seater MGB convertible that he drove around the quiet back roads of Lancaster County, with the towheaded kids belted in behind—he made a place for them to sit that had been originally intended for luggage. The grazing cows slowly look up and the still air smells of manure and hay.
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