No wonder Jeff didn’t want to lose control over his bowels—moving your bowels is about life itself. If you read the label on any laxative or enema, you’ll be warned off regular use, because the chemicals, whether plant derived or lab produced, will take over. You’ll lose the ability to move waste through your system and out of your body, and become dependent upon the chemical stimulation. If central nervous system damage has brought you to your bowel program, getting an enema and then sitting on the commode will become part of your routine of care, with no end other than death in sight. It makes sense that Jeff wanted to avoid reliance on chemicals as long as he could. In time, though, he had more and more accidents like the one I helped to clean up. He became “weak-sphinctered,” and needed to make a change.
Jeff clearly experienced the need to decide on a bowel program as a qualitatively different sort of change from the many other adaptive choices he had made through the years. When he could no longer reliably push his self-propelled wheelchair, he joked that he “couldn’t wait to get the electric chair.” The dark underside of his phrase acknowledged a loss, but the power chair itself enhanced his life. It was more comfortable, with better support for his body, and it sure was fast. He soon mastered the joystick, and loved making me run to keep up. The bowel program, on the other hand, was no joking matter. Its arrival announced only loss.
I wish now that Jeff and I had talked more about his feelings about his body, especially after he retired. On the rebound from his divorce, he started a relationship that worked for a while, but pretty quickly deteriorated. For a couple of years before my accident, we spent a lot of time talking about that stalled relationship as he struggled on in the ever more aggravating, repetitive quarrel he and his lover elaborated. One thread was conversation about the future. She would pessimistically imagine for him a rapid physical decline that was at odds with his own inherently more optimistic view of life, and he confided in me their increasing, iterative, and exhausting disagreements. But we spent little to no time discussing how relentless illness and gathering incapacity feel. Then I broke my neck, and when I was again able to closely attend to my brother, he had moved to the nursing home. I was awake to the horror of our twinning each other in paralysis, and feared that we would soon talk only about the daily, intimate care serious paralysis demands—how hard it is to set up that care, how hard it is sometimes to receive. I swore I would never talk with him about his bowel program or mine, would say nothing about his catheter or mine, his urinary tract infections or mine, his Foley bag or mine. Let alone about how I felt about my new relation to shit and piss.
Then six months before he died, he sent me an e-mail saying that he was having trouble, too often completing his routine of laxative and enema only to shit in the bed, or even worse, shit after he was up. Getting up and dressed was becoming increasingly onerous for him and certainly for his aides, so to soil his pants and the cushion of his chair shortly after he was positioned there was deeply frustrating to him. All that work to get dressed and in his chair, only to make a mess! He wondered how my bowel program went. So I told him all about it, and we talked over the terrible fact that, unlike me, he could no longer push at all to move stool through the anal canal. Toward the end of his life, only the chemicals of an enema and digital stimulation could clear waste from his body, and sometimes that simply wasn’t enough. So we did, in the end, discuss in some detail both his bowel program and mine.
When Janet and I arrived at Moravian Manor to visit Jeff on New Year’s Eve 2009, we came with funny hats and noisemakers, ready to celebrate with him the arrival of 2010, and planning a New Year’s Day packed with football watching. His physician would write a prescription for a six-pack when his book club was coming over, so we had bought both popcorn and beer. We got a terrible shock. We didn’t expect to see any other family members when we arrived, but we turned the corner to find Kirsten running down the hall after toddler Justin, who was always on the move. She was crying hard, and sobbed to us, “Jeff is dying. He’s dying of congestive heart failure. The nurse just told us.”
I couldn’t believe it. His move to the nursing home decisively broke off his already broken relationship, which enabled a significant rapprochement with Beth. She had called us two days earlier to let us know that he might have a urinary tract infection, and that he was taking antibiotics as he had done so many times in the past and sleeping a lot. There had never before in his life been any talk about heart trouble, so I didn’t understand what Kirsten was telling me. Driving to Lancaster, I fully expected him to recover from the infection, as did we all. Urinary tract infections are old and familiar antagonists to anyone wearing a catheter. Besides, Jeff had been strong enough to join the family twice for Christmas celebrations just a few days earlier. A little further back, in mid-December, he had sent out his annual holiday letter in which he spoke of the future with no hint that he mightn’t see the coming months. Later, after Kirsten had time to think over the previous couple of days, she said that he had almost certainly aspirated some beer during Christmas dinner, when drinking from a bottle she was holding for him—suddenly he jerked away and tried to cough, but his diaphragm was no longer innervated enough, so he sat at the table gasping for breath.
Now, when we walked into his room, he was lying propped up in the bed, already unable to speak, laboring for breath, his blue eyes moving from one face to another. How could he possibly be dying, and only communicating with his eyes? We spoke to him, touched him, told him how much we loved him, but he couldn’t reply. He had been coherent and talking so very recently! That morning! Months later, Elaine, who worked as a nurse before getting her Ph.D. in English, helped me understand how the fatally compromised muscle that was his heart could not circulate enough oxygenated blood, and his body needed all the energy it could summon just to keep breath moving in and out. That’s why speech had quickly become impossible. Earlier that day, when it was clear to the nursing staff that he was rapidly worsening, his physician had been called to his bedside and was able to put the question directly to Jeff. “Do you want under any circumstance to go to the hospital?” Jeff quite clearly said, “No.” That clarity was consistent with the end-of-life directives he had drawn up earlier, and relieved all of us from wondering about medical decisions regarding the level of care he wanted. When he said “no,” he knew he was refusing heroic measures that he didn’t want to keep him alive.
Poor Colin had gotten the call that his father was dying, and was driving up from Baltimore. He arrived to kiss Jeff and tell him he loved him, and to watch with the rest of us Jeff’s excruciatingly labored breathing. How long could he possibly last, working so hard to breathe? The New Year turned as I spent the night in my chair next to Jeff’s bed and Janet sat beside me. We leaned on each other with our eyes closed, while Kirsten and Colin slept uneasily on mats in the physical therapy room, and Beth dozed on blankets spread on the floor at the foot of his bed. Janet and I left for the hotel early in the morning, only to find a poignant reminder of the visit that we had imagined—hats, noisemakers, and complimentary champagne in an ice bucket, the ice long since melted. When I was able to gather myself and reflect, I realized that the information he had given me about his bowel program several months earlier was evidence that his body was truly shutting down, a process now impossibly speeded up, so that when Janet and I came to his bedside again later that morning, his eyes were open but unseeing.
His impaired circulation was slowly depriving his whole body of life. Breathing became increasingly difficult, until every breath he drew gurgled through thick mucus that just kept coming and coming, at times pouring out of his mouth and nose—the congestion of congestive heart failure. Once or twice a respiratory therapist suctioned mucus out of his throat and lungs, but it made little difference, since his body only produced more. Even now, the bowel program obtruded, for it is nothing if not relentless. Medical protocol dictates that a patient may delay a bowel program for no more than a certain number of shifts, a nurse inform
ed us when she came in with an enema. It is, however, within your power to refuse medical advice, which Kirsten did, backed by his living will. So he was spared that last iteration of the bowel program, though his dying took four days. He always had one of the family with him, and many friends stopped to embrace him one last time. There was much singing of hymns and much praying. I was so heartbroken at his suffering that I at one point looked up from my vigil by his head and said, crying, “Pam, would you please pray?” I asked her for prayer because she was Jeff’s pastor, and I desperately needed the assurance he was being carried through the crisis. I was utterly at a loss. Kirsten and Colin cycled through the playlist on his computer, keeping the music he loved playing for him, while the high-end Logitech computer speakers I’d bought him for Christmas sat unnoticed on the floor, wrapped in colorful paper and tied with a bow. The staff of Moravian Manor set up a folding table in the corridor outside his room that was soon covered with food, as in long-ago covered-dish dinners at the Stone Church of the Brethren that I attended as a child, but there was no pleasure in any of it. I’m still troubled by my memories of his death, which seemed to me like a slow drowning, though I’ve been assured that the Ativan and the morphine pump implanted midway through the process eased his way. It still breaks my heart.
Mind and body do, indeed, “run on different timetables.” Jeff remains very much in mind, despite the fact that his body is now gone, some of his ashes buried in a memorial garden at his church and some scattered into the grasses of the Peace Chapel. That portion of his bodily remains has been taken by the winds, and driven by the rain into the ground, into the streams, out to sea, and who knows where. No doubt Jeff remains in my body. Surely he lives on in the brokenness of my bowels and the brokenness of my heart. I carry memories of him in other parts of my body, too, happy memories of childhood play running, riding, jumping, turning, catching, throwing, hitting, aiming and releasing, grappling and letting go. Maybe remembering Jeff also helps me somehow to endure my quadriplegic body. I couldn’t imagine what it was like to live as Jeff did before I got hurt, and I know I can’t always comprehend what it is to live as I do now, yet I live on. The bowels lead for life, to the release of “a satisfactory / Dump,” as Auden imagines, and although the pleasure of that “dump” is forever gone out of my life, my bowels still evacuate waste. Although I thought I never would, I wrote to Jeff describing my bowel movements, and he replied. This correspondence was a practical exchange about a function necessary to life, and was in no way elevated. The poet would have approved, for he writes, “When we seem about to / Take up Higher Thought / Send us some deflating / Image like the pained ex / pression on a Major / Prophet taken short.” Auden’s image should ironize any happy idea that disability leads to profound insight or higher understanding, despite the narrative arc that organizes so many stories about living with an incapacitated bodymind. That arc carries the troubled subject through painful trials to livable accommodations and lessons learned, and all too often sounds the note triumphant. Don’t believe it. Much of how I live, especially the working of my bowels, is simply beyond belief.
12
I’m Your
Physical Lover
When Maggie walked into the hospital room, she said, “You’re beautiful.” I didn’t believe her, but I loved her for saying it, nonetheless. Nine years earlier, she had been my student, and now we were friends. I read her books of poetry as she began to publish, and felt deep satisfaction as she made her way to success as a writer. When I got to the rehab hospital, she started driving every other weekend up to Middletown from New York City, where she repeatedly borrowed a car so as to come to my side. Janet needed time away from the hospital, so Maggie would spell her on the weekends, staying with me Saturday afternoons and Sunday mornings. She moved to Middletown to teach for a year at Wesleyan, and was here to help and to support us for months and months after I came home. In that time, she, too, suffered, and endured the unbecoming that is the blank sign of a deeply felt love betrayed. I loved Maggie before the accident, and two years of intensely heightened intimacy profoundly confirmed that love. She is a writer and a teacher, and in that time we talked about a world of things—sex, desire, bodies, heartbreak, language, love, poetry. I was devastated with pain. Neurological destruction made a wilderness of my body. I was in an agony of grief. Being Maggie’s friend in this time took me out of myself, and I will be forever grateful.
In this passage from a long (six-page) lyric poem addressed to me, “Halo Over the Hospital,” she represents one of our exchanges in the rehab hospital. (The halo was made by the brilliant yellow leaves of the trees around the building that were illuminated by the sun one day in November 2003.)
Later I sit on the bed
and tell you a little about my spastic love-life, about the person
I’m trying not to be in love with
You ask if we went home and fucked, I say we did
and you are happy, and I love the way the word Fuck
comes out of your wired mouth, as if desire can never be
closed down or tortured out, as if Fuck will always bubble out
of a metal forest. I tell you a little more
and you say, Good for fucking, bad for future planning
You say I don’t have to be ashamed of my desire
Not for sex, not for language
You say that you learned by age 50
that you need them both, together, and that you and J have that.
You’ve been so happy. Crying now you say
All I can think is that if we built it once
we can build it again and I know you will and tell you so . . .
The idea of fucking still makes me happy—its Anglo-Saxon frankness is closer, I think, to the pleasures of sex than the anodyne phrase “making love,” and the possessive register of “having sex” is all wrong. It has you as much as you have it.
Janet and I did once again build a durable life bridging swift and treacherous currents. Irremediable grief remains, however, a still powerful force, and I feel its deep tug every day. For me, fucking is so changed from what it was that, try as I may, I cannot reconcile myself to my losses. How can I settle for a life with deadened sensation that decrees I’ll never again have an orgasm? How can I live on with profoundly compromised strength and tactile perception, especially in my hands? How I miss the way sex used to feel! How I miss feeling my entire body—every molecule, every atom, every subatomic particle, every Higgs boson—moved by desire! My hands used to be strong and capable, and I used them to good purpose in sex. No more. Nor can I move my body with any ease or pleasure. I can’t even roll over in bed! I have to pull myself into a sitting position, cross one leg over the other, look back over the opposite shoulder, reach that arm backward at extension to support my weight, and with my other arm hook my crossed leg at the knee to draw it toward me, which will turn my hips as I lie back down.
I feel my losses so acutely because Janet and I enjoyed a sex life (love that phrase) that was really thrilling. For quite some time after we became lovers, we kept the futon down in the living room, rather than having it masquerade as a sofa, because we so often turned to fucking as we would talk, read, or watch football on TV. Thrills are a kind of peak intensity, and it’s true that “futon living,” as we called it, couldn’t go on forever. After a while, we returned the furniture to its more public posture. The real thrill, however, was unabated, and that was the exciting possibility of an ever renewable resource, always available to us, an affirmation of intertwined and amplifying love and desire.
when you open your eyes, . . . you’re slightly stricken
upon remembering the prison
your body has become. I’m frightened, you say
Then I’m sad, so sad to be paralyzed, and I’m sad too
You can’t wipe away your tears because your hands
don’t move, and I can’t wipe them away either
because it’s too abrupt a motion, everything now
needs to happen very slowly. So we place
a wet towel across your eyes and the tears
must soak upwards . . .
Everyone at home wants to know if you are OK
You’re not “OK,” you’re paralyzed and in tremendous pain
Everyone keeps asking, do you think she will walk again?
But that really isn’t the issue . . .
Apparently the spine runs the bowels and the blood
and just about everything else, miraculous and hurt
jelly cord. Your whole body suddenly withered and transparent
We can see your muscles move with the electrodes on
you have some tricep, no bicep, your left quad jerked
but no luck on the right1
Maggie’s words recall to me so clearly my condition in the hospital, and make present once again the physical incapacity, unfocused fear, and infinite sadness of those months. How could I be this body? How could I bear what I had become? How live with this soul-destroying pain? How could I ever be desirable to someone else, when my body so confused and frightened me?
From the first, I had sensation from the soles of my feet to the top of my head. The further up my body, the clearer the sensation. My face, for instance, registered everything as it used to do, despite the arch bars, but my hands were quite another story, curled into loose fists that I could not open. Fingertips that once could delicately, precisely stroke a lover’s clit and register her every response, and fingers that could fill her vagina were now disabled and their sensitivity deadened. Janet would sit on a chair pulled close to the bed, and would sometimes open her hand and press the side of my face. I could feel the texture of her skin and the pressure of her hand just as before. She often took my hand as it lay on the bed and held it in her own—but I couldn’t grasp hers in response. An embodied pleasure I had actively enjoyed was holding Janet’s hand when we walked together. I just wanted to touch her.
A Body, Undone Page 11