A Body, Undone

by Christina Crosby

  When they first moved to Lititz, he was strong and capable. In a snapshot of the U-Haul out in the alley behind the old stable, Jeff’s in a T-shirt and shorts, wearing laced-up Red Wing work boots, standing on the bed of the truck and poised to jump down. He’s so handsome with his brown beard, strikingly blue eyes, and muscular build. He looks so strong, as he indeed was. Yet even in that moment he had MS. Then he couldn’t operate the clutch of the MGB anymore, and had to sell it. He started using a cane. He and Beth began looking for a new house when the walk from the back, where he parked in Prince’s stall, proved to be too long. They moved from Lititz to a one-level house in an older suburb of Lancaster. Then he needed a folding wheelchair to use when standing was too hard and walking difficult—or sometimes even impossible. He began to use the chair all the time, and one day he was no longer able to make the transfer from it to the driver’s seat of their red VW van. He bought another van, also red, though disappointingly not a VW—a full-size Chevy, modified to meet his needs. He steered by grasping a knob on the steering wheel, and controlled the throttle and the brakes with a lever on the left-hand side of the steering column. The van was fitted with a wheelchair lift, because he was in his chair full-time. A lockbox (6″ x 10″ x 2½″) was installed on the floor in the empty space where the driver’s seat had been, and he would maneuver his chair until a bolt underneath would be caught by clamps in the box, and click-lock him in place.

  Through all these changes he continued to look much like “himself.” He sat upright in his chair, wore a suit and tie when dressed for work, and easily, even triumphantly showed off his skills, bumping down steps, popping up over curbs. Some years later, my cousin Barb, who works in Lancaster General Hospital as a social worker, made a passing remark that he was starting to look different, so I intentionally tried to see him anew. She was right. As he entered his forties, his abdominal muscles slowly started to fail, and he could no longer sit easily upright in his wheelchair. Looking at him I realized that his gestalt was newly nonnormative. The muscles of his back and abdomen were weakening, and his torso, once muscular above his bathing suit and brown in the summer sun, began to very slowly collapse down on itself, like a melting cone from Dairy Queen. And now he needed a battery-powered chair, which he would control with a joystick. The pace of the paralysis seemed to me to have quickened, but it may be simply that I saw him only two or three times a year, and his voice on the phone was unchanged. When we visited next, I noticed he had a Velcro belt coming under his armpits and over his chest, which had to be belted when he was out and about, and without which he could not drive, because he would simply pitch forward at the waist.

  Janet and I went to see him when his marriage was failing, and he and Beth were separated. It was a couple of years before my accident. Beth stayed in the house with the kids, and he moved into one of the few accessible apartments for rent in Lancaster, a little basement studio with one window up high. Everything suddenly seemed changed for the worse. One of the times when he was assembling the help he would need to live alone, I was with him. He was on the phone, and was evidently asked what kind of assistance he required. “Well, for starters, I need help with dressing and undressing, and getting in and out of bed, and help with just about everything in the bathroom—shaving, brushing my teeth, getting on and off the toilet . . .” As he continued with the list, I suddenly understood his life differently. I simply hadn’t known—or wanted to know—how dependent he had become, because I didn’t see the work of producing him as the public person who rolled out of the master bedroom (with its newly constructed, en suite, fully accessible bathroom) that he shared with Beth, ready for work, looking like the lawyer he was. I wanted him to simply be that person. I hadn’t fully realized that he could no longer do much of anything that required fine motor skills, and had lost the ability to independently transfer himself into or out of the chair.

  Large and small muscles alike were giving way, as his neurological system developed ever more fatally hardened plaques. All the intimate, invisible work such a devastating physical decline entails was, I’m sure, a grave complication for a twenty-four-year marriage that was, of course, a complex history of intimacy. I have no wish to recount that relationship from my point of view. Whatever intolerable negative surplus brought them to divorce, the MS that shaped their adulthood objectively became a heavier and heavier burden—but a weight carried in the privacy of the bedroom and bathroom. The labor of moving him on and off the toilet, helping him first on, and then off of the shower bench, waiting while he used the joystick to maneuver the chair over into position by the sink, then squeezing toothpaste onto his toothbrush and waiting for him to brush his teeth, putting on the super-tight compression knee socks he wore against edema, rolling the external catheter onto his penis and then attaching it to his leg bag, and *finally* getting him dressed—these jobs were invisible to me until he was no longer living with Beth, and I started helping him.

  When Janet and I came to visit, the aide who would come from an agency wouldn’t come, and I would help him. “Look, Tina—here it is, rolled up. Just put it on like you do a condom.” I looked at him. He looked at me. “That’s a useless comparison for me, you silly boy,” I said. And then we laughed and laughed. Helping with his body brought us closer together. I came to understand in great detail that Jeff’s body had really changed, and would continue to change. He would need more and more help.

  In an essay he wrote four years before he died, Jeff recounts how asking for help can be a gift to the one who offers assistance. There you are in your wheelchair, and people want to help, sometimes coming up without being asked. If he didn’t need any help, Jeff would quietly and politely say he’d like to be as independent as possible. As he became less able, he realized that asking for assistance could be an opportunity for someone to enjoy the pleasure of giving. He asked for help openly, even of people he didn’t know, or knew only slightly. Rather than conceptualizing his need for help as nothing but diminishment, he realized that many people wished to ease his way. He wrote a short essay, “I Believe in the Importance of Asking,” that was aired on the local NPR radio station in their series of “This I Believe.” In it he narrates how he became progressively and inexorably more dependent. When he wrote the piece, he was unable even to scratch his nose, because he could no longer lift his arms, and his hands were long since quite useless. Yet he concludes, “The power of asking is my only growing power these days. And it truly is a power that’s most important. Asking has taught me that I’m not MS—it’s only a part of me.” His empathetic interest in the lives of others drew people to him, and his openness about his needs was most often attractive, not repellent. How he lived with his incapacities made him the man whom others wished to help and befriend, making the disease secondary, despite its destructive power.

  When he wrote his essay, he was living in the nursing unit of the Moravian Manor, a continuing care community that our cousin Barb helped him get into when the time came for around-the-clock care. The community is run not by the Brethren, but by the Moravian Church, a Protestant denomination similarly harassed out of Germany in the seventeenth century. The property abuts that of the Lititz Church of the Brethren, and when Jeff lived in the Manor, he was able at first to ride his wheelchair over to church on Sunday morning. By the time he wrote on the importance of asking, he was spending more time in bed as it became harder and harder for him to summon the energy to sit up, and there was little incentive to transfer over into his chair, because he could no longer use the joystick to move it once he got there.

  Throughout his life, Jeff fought for mobility, and didn’t stop even though he was living in a nursing unit. He discovered on the Internet a new chair developed by a tech engineer living in California. The chair was controlled not by a joystick, but by pressure on a mouthpiece like a retainer—you would use your tongue to guide it left or right, forward or back. Jeff had been part of a Sunday school class for decades, and he told them about the chair, which c
ost $40,000. Led by his class, the congregation of the Lititz Church of the Brethren, with help from the church’s district office, bought the chair for him. He preached a lay sermon not long after, and likened the gift to the miracle at the pool of Bethesda when Jesus bid a lame man to take up his bed and walk. The gift of the chair “manifests Christ’s teaching through the action of our Brethren body,” he told the congregation. The generosity of his brothers and sisters in Christ promised to ensure his continued mobility, and immeasurably relieved his mind. As it happened, repeated technical failures limited his use of the chair, and the discovery that the signal sent by the mouthpiece interfered with the wireless call system of the hospital strictly limited the hours he could use it anywhere outside his room. Yet even as it became little but an encumbrance in his small space, he remained deeply grateful for the generosity of his fellow congregants. He did not lose faith.

  Jeff managed to get to the hospital when I was hurt, which happened right before he moved into the nursing unit of the Manor. I have a blurred half-memory of his wheelchair at the foot of the hospital bed. It was an enormous effort on his part, and I love him for it. Then, as I began to comprehend all I had lost, I was increasingly horrified at the apparent symmetry of my embodiment to Jeff’s. I remembered the first time I heard him call himself “quadriplegic,” a word that signified to me a frightening degree of helplessness, and one that came slowly to him. He had continued to work long after his hands were no longer functional, but it was only after his illness had forced his retirement from the law firm that he used the diagnostic term “quadriplegic” to refer to himself. I think it helped him admit the fact that MS had actually ended his working life. He was my only sibling. Mother was increasingly frail and diminished by senility. She often needed a wheelchair. My father had been dead for thirteen years. I had been healthy and active over the decades as Jeff’s strong, athletic body became increasingly incapacitated and for some years was the only able-bodied member of my family. Lying in the hospital, I vaguely knew the word “quadriplegic” now applied to me, too, though my mind revolted from that likeness as a coincidence entirely too improbable to be true.

  10

  Violence

  and the Sacred

  As you know, Jeff was barely a year older than I, and, because I never had any interest in girls’ sanctioned pastimes, I now and again imagined I was his twin. I didn’t wish that I were a boy, and I don’t remember this idea as a highly developed fantasy. It was rather an easy way to account for the fact that he and I dressed much alike and played together all the time. It was, of course, also a way to make sense of my competitiveness with him. After I started elementary school, when I got home I couldn’t wait to change out of the dresses and skirts I had no choice but to wear, and into T-shirts and jeans. Dad taught us each to swim at the same time, in the lakes and dammed-up rivers we encountered when on camping trips, and would romp endlessly with us in the water. We both had baseball mitts, his with JEFF lettered in black magic marker on the wrist strap, mine with TINA, and Dad taught us both to throw. When Dad made slingshots for us using his jigsaw, I wood-burned TINA into mine and my brother burned JEFF into his. We made targets out of cans filled with stones, and would compete to see whose shots were the most deadly. A couple years later, Dad cut skateboards for us in his workshop downstairs, and helped us paint them with racing stripes. He then hacksawed roller skates in half and bolted the wheels to the boards. One summer we rode those boards every day. We shared baseballs and bats, and played tetherball out back for hours on end, or would shoot baskets and play H-O-R-S-E until it was too dark to see the rim. Downstairs in the basement we played epic matches of ping-pong on the table that Dad built. We were pretty evenly matched, in that as in most things. We both learned how to do the J-stroke when paddling in the stern of the canoe so as to keep it on course, and were directed by our parents to play fair and trade off who got to be in that coveted position. We played kick the can in the back yard with neighborhood kids, and “bicycle polo” with cobbled-together sticks and a tennis ball in an empty parking lot beside Oller Hall on the Juniata campus. We lived only a block away, and for us, the sidewalks, parking lots, paths, and athletic fields of the campus were all places to play. We played games of skill, coordination, strength, speed, and endurance all the time.

  Our play was almost all physical, and almost always we were competing against each other. When we were bored in the car, we would play a reflex game Dad taught us. Jeff would reach out with palms up, I would reach out with palms down, over his hands but not touching. Then he would fast as lightning turn over his hand (or hands) to slap the top of mine. Sometimes he’d execute a successful fake to make me draw back needlessly, an error that exacted the penalty of a free slap. In time I would draw back without being touched, and then would be my turn to strike. We played until our hands were lobster red. Eventually the game would devolve into shoving and then to punching.

  “That’s my side of the seat.” Jeff, incited to cross the line, put his hand over; I shoved him. He hauled off and punched me in the upper arm. “That hurt! Besides, I told you not to!” I hissed, and punched his thigh with my balled-up fist. Back and forth it would go, until the front seat noticed—on bad days, until Dad threatened to pull over and stop the car then and there. That quieted us down.

  In nearly everything, Jeff and I were treated exactly the same. We were given the same allowance, starting at a quarter each week, supplemented by whatever 2¢ pop bottle deposits we could redeem, income and expenses both to be recorded every week on three-by-five index cards. In return for that allowance, we had the same household responsibilities. We alternated days “on call,” when we had to be ready to run an errand to the little grocery store two blocks down the street, and were responsible for setting the table for dinner. When we were older, we had to clean our bedrooms before going out to play on Saturday.

  If deeply aggrieved with each other, either one of us could “make a complaint” (so named to impress on us the gravity of “telling”) to either Mother or Dad, who would be the final arbitrator of the dispute. Moreover, we learned that our family was a “company,” with a single “company wallet” kept in a drawer by Mother’s desk in the kitchen. Familial pedagogy encouraged us to understand ourselves as part of a democratic (albeit hierarchical) polity. The sway of reason was to prevail—that, I think, was my father’s idea. For her part, Mother inculcated a feeling that was never articulated explicitly—as a family we were always already reconciled, strife among us banished by Christian forbearance and forgiveness. So we learned that conflict was to be avoided by submitting to reason and Christian love.

  Yet Jeff and I fought all the time. We fought sometimes for fun, when we wrestled or pretended to box, and sometimes not, when we pummeled and pushed. Not every game devolved into fighting, but I do remember fighting all the time. Roughhousing often got serious, although even when we were outright fighting, there was an unspoken taboo against blows to the head or face. Hitting *hard* with a closed fist on any extremity we permitted. We really scrapped with each other, chasing through the house, banging doors and then wedging them shut with a foot, making a ruckus that could morph into real hostility. I think it likely that I was more often the aggressor. It is certain that I was bigger than Jeff from age two or three on. Not until he came back from his first year in college was he taller and decidedly stronger than I. Too often, strangers would assume that I, the girl, was the older one, a confusion that Jeff found truly hard to bear.

  Moving through grade school, where I could never wear pants to school, even on the coldest days, I no longer felt so vividly my likeness to Jeff, but I think our family formation did much to keep that idea active in my unconscious life. At home we were treated alike, with no favoritism, and the communitarian ethos of church and college reinforced the familial ideal of equality that governed my parents’ child rearing. We were given to understand that neither one of us had an advantage over the other. My idea that we could be taken for twi
ns was, perhaps, a childish assertion of this logic when we were little. Jeff and I wore the same clothes, had the same equipment, played the same games, and were equally matched. What one was given, the other was given. Ergo, we were the same—as twins look to be. Because girls were deemed inferior to boys, I thereby claimed for myself the privileges of boyhood. Because my family was in some important ways eccentric, different in our often-articulated Anabaptist values from most families in our small, conservative central Pennsylvania town, I was praised for my physical abilities and aptitudes by parents who, thankfully, wanted to treat Jeff and me as junior partners in the Crosby Company. There’s no way, however, to simply opt out of feeling the difference normative binary gender makes, and my father (more than my mother, I think) was troubled by the fact that I was physically bigger and more aggressive than Jeff—who was older and a boy. Certainly both Mother and Dad were annoyed, I imagine now and then even seriously troubled, by our constant pushing and shoving for whatever advantage was at hand. So at last there was a really big fight. There had to be.

  Or so René Girard argues in his meta-psychological historical anthropology, Violence and the Sacred, a book that makes several big claims and one small observation that has bearing here.1 Girard is concerned with the way one act of violence incites another, and posits that the imposition of differential power is the only way to stop unending cycles of killing and revenge, each violent act replicating the one that had come before. In other words, likeness is a problem. “Wherever differences are lacking, violence threatens,” he writes. “Order, peace, and fecundity depend on cultural distinctions; it is not these distinctions but the loss of them that gives birth to fierce rivalries.” I think of the brothers of the Hebrew Bible—the murderous rivalry between Cain and Abel, or the struggle between the twins Esau and Jacob for preeminence and their father’s blessing. Twins are especially to be feared as the “harbingers of indiscriminate violence.” Perfect equilibrium can’t be sustained and presages violence, thus justice requires an imbalance of power to create ethical distinctions. Only the introduction of some “transcendental quality” can bring an end to the cycle of vengeance by imposing a fundamental difference between the sanctioned violence of a judicial system and the unsanctioned violence of revenge.