Right before I was to be discharged to the rehab hospital, orderlies appeared to wheel me away through the corridors, and I watched the labyrinthine greenish ceilings and walls pass by. I was headed for the first of two procedures (“minor surgeries”). The first put a Greenfield filter just at my crotch, in the big vein coming up from my leg, there to catch blood clots that develop when circulation is compromised. For the second, a surgeon ran a gastrointestinal tube through my abdominal wall and into my stomach so as to pump food into me—I had been on IVs for a month, but when I got to the rehab hospital that would change. When at last I was released from Hartford Hospital, I was delivered by ambulance to the Hospital for Special Care about thirty minutes away. October was nearly over, and I was to stay at HSC until early March. It was there that I knew I was in pain.
I had been living on an IV drip, ingesting all the while a remarkable quantity of narcotic drugs that slow down the body’s systems, and now I was being fed through the GI tube. Every night I was hooked up to a machine that forced puréed food into my stomach, so I imperatively had to begin moving my bowels. Thus the horror of gastrointestinal gas began, which left my skin savagely tight over my distended abdomen. Although I was being given NuLytely, a mightily powerful drug used to empty bowels—you may have used it when cleaning yourself out before a colonoscopy—I could not relieve myself. You’re quickly in big trouble if you’re not moving waste from your body. As I learned, “bowels lead,” a simple truth with profound ramifications. Constipation, uncomfortable for anyone, is a real threat when emerging from surgery, because the body recovers from general anesthesia slowly. I had been under twice, and each time for a long time.
The doctors needed to know whether there was a bowel obstruction, which raised the specter of another surgery. I was therefore transferred out of my bed onto a stretcher and wheeled through this new hospital, into a big stainless steel box of an elevator, and down to the radiology unit. In a dark and cold room, a technician prepared to do a sonogram of my poor abdomen. When she began spreading the gel on me, I begged her to stop—It burns! It burns! It burned because the gel was cool, and I was so neurologically scrambled that cool felt hot on my belly. How was I to describe this pain, lost in a body so foreign to me I could translate it into speech only in the most primitive way? The gas I understood, because my gastrointestinal tract has always gone awry when I’m under stress. I suffered terrible car sickness when I was a kid, and later on in college lived with acid indigestion I treated with Rolaids from a great big jar I kept on my desk. As an adult, I’d experienced gas pains that at times left me doubled over. Nothing, however, prepared me for the experience of intestinal gas so high and so impossible to pass. I literally could not fart. All below my rib cage was more or less paralyzed, increasingly so as you moved down my body and that included, of course, my bowels, my rectum, my anus. So I was turned on my side, and Winnie, my kind, thoughtful, and skillful nurse, inserted into me a tube with a plastic bag on the end that would inflate if gas passed out of me. Maggie, who day after day sat with me, reports that one time when suffering this way I said, “Winnie, the pain in my intestine is coming from my unconscious.” Doubtless I was at least partly right. No surprise, your unconscious awaits as you begin to recover from catastrophic injury.
I was plagued with thirst. The arch bars in my mouth and the pins in my face were causing the muscles in my face and throat to atrophy. The bones in my face were still unstable, the many tiny parts not yet fused with the pins. I couldn’t swallow water, although I could manage a thicker liquid like yogurt. Nor could I keep my mouth closed. My lower lip had been split open, and even now does not completely close to make a seal with my upper—I hold my lips together with my hand when I rinse with mouthwash. At the time, I understood nothing of this. All I knew is that night after night after night I would awake with a raging thirst. That phrase, raging thirst, is a cliché only because when you are really thirsty, your need for water feels so exigent that the thirst holds you hostage, loudly raging for water, water, water. Water. Water. Please, water. My mouth was so terribly dry. The whole of my being felt desperate with thirst. When a CNA would appear in response to my call, she would fill a small paper cup with ice water and immerse a little green sponge on the end of a wooden stick, then put the wet sponge in my mouth. I would suck at it. The cold water felt so good, but I got just a tiny amount, and would ask for more. More, please, more. Are you done, the aide would ask. No. Another, please. Please. But she was pressed for time, and would move away, and I would close my eyes and try despairingly to breathe through my nose, feeling my lips begin to part all the while.
Late at night, as the earth turned toward the small hours, when I was wrenched from sleep by my thirst, I would awake on a wholly different floor, somewhere upstairs in the hospital—so I thought in my confusion. There I was cared for by a beneficent Polish woman in her later middle age who helped me when I called, on fire. She would fill the cup and give me the icy, wet sponge, again, yet again, yes, please, yes. Finally, smiling kindly, she would turn the small paper cup upside down. “All gone, you drank it all!” She would fill it again and stay with me until I said, “Enough, thank you.” I am uncertain of her name (Elizabeth?), but will be forever grateful for her compassion.
More dreadful than the gas or the gel, even more terrible than the terrible thirst, were the painful currents running through my body. I’d never felt anything remotely like it. My drugged sleep yielded up a vivid nightmare—my skeleton was burning, every bone outlined in red. Pain felt like electricity somehow let loose on me, a statement that is both figurative and not, because the signal that passes biochemically from one neuron to another, lighting up neural networks, is, in fact, electrical—the passage of ions down the axon of a neuron and across the synapse to another neuron, continually, instantly accomplished trillions of times in complex networks all through your body. Trillions. My central nervous system was sending out solar flares. Perhaps the most terrible night came weeks into my stay at the Hospital for Special Care, when I finally grasped the extent of my paralysis. I awoke at night on fire, my skin crisping from the soles of my feet, up my legs and back, tight around my abdomen right up to just under my rib cage, and down my arms onto my hands. I was burning the way you burn when shocked with static electricity, but the shock was infinitely multiplied and running thickly, continuously under my skin. This ferocious buzzing was let loose on me by scrambled nerves that will never ever fully recover, neurological pain that could outline my body by thickly fizzing my skin, as it did that night, or more deeply penetrate my extremities, as was sometimes the case. What a horror, to finally and viscerally understand how profoundly I was hurt! I “knew,” of course, from bedside conversations with my physicians and with Janet all that was known about the injury I had sustained. My mind was intact, but how could I understand a body so fundamentally transformed? I had no real idea until then of the scope of my injury, how far up on my body it came. And what a horror that the drugs I was being given didn’t make it stop!
It called to mind another hospital. I was seven years old and having a tonsillectomy. On my back in the operating room, I looked up at the gowned and gloved adults who were looking down at me. “Count backwards from one hundred,” I was instructed, as a mask hissing ether was put over my nose and mouth. Then in the seconds it took for me to lose consciousness I felt myself falling free, nauseated and gassed, through black space dotted all over with points of colored light. I clearly saw myself, outlined as if by a gingerbread cookie cutter, plummeting down, down. I was, for those seconds, sure I was going to hell.
Now I was there.
Years after my discharge from the Hospital for Special Care, there’s no discernible pattern that I can see to account for the good nights and bad nights. Most often I lie on my side, having positioned my legs so that the top one is drawn up, bent at the knee with my foot resting on a pillow so that the bony protrusion of my bunion, where thin skin stretches tightly over bone, does not touch th
e sheet and begin to throb. (Bunions, I’ve learned, are big toes that have been drawn in toward the smaller ones so that the joint on the side of the foot sticks out, making it wider at that point. These malformations developed as the ligaments and tendons of my foot contracted, which has also given me hammer toes.) After arranging my foot, I lie down and put one hand under the pillow, palm up and fingers spread, so that the weight of my head will stretch it open. So positioned, now and then I realize to my surprise that the electricity has been turned off and I’m not in pain. Unless I consciously try to move my legs, they’re just there. I can feel the weight of the duvet, and feel that one leg is bent, the other straight—though just where each leg rests on the sheet can get confusing. I lie there quietly.
More often than not I feel myself buzzing. Eleven years after the accident, on good days, pain recedes into the background of life, and when I’m outwardly engaged I don’t think about the fact that I almost always feel a current running through my body. Yet sometimes I can’t ignore the pain, when my skin feels thick, electrified, and vibrating. You can imagine a wet suit, the kind you’d use when windsurfing. I had one—it was made of neoprene that hugged my body tightly, and when wet held next to my skin a thin layer of water warmed by my body heat. My skin feels like that neoprene, thick and pliable, with an electric current carried through the underside wetness of blood and lymph. At this very moment of writing, I feel that current making a bold outline of my body. My feet and ankles (which swell, sometimes prodigiously, over the course of the day) buzz all the way through, while my thighs and sit bones press uncomfortably against the seat. My fingers are cold, thick, and buzzing, and stay cold unless the temperature’s above 80°. This phenomenon plagues me because the injury to my spinal cord is right at the level where the spinal nerves connecting my hands to my brain branch out between the vertebrae, and those neural networks are implacably compromised. There was a pharmacologist on the staff of the rehab hospital who had a round, white button pinned on the lapel of his lab coat—PAIN was spelled out in red letters, with the international “forbidden” line in black drawn diagonally through the word from upper right to lower left. My chronic neurological pain gave the lie to that button by insistently breaching that line when I was in the hospital, and continues—though moderated—to break through whatever drug is on offer.
Sometimes the buzzing is more like burning, so that my skin feels like crinkly hot Saran wrap. That’s what happened last night. It reminded me of just how horrible I felt in the hospital, and how long I felt horrible, when I wondered in rehab whether I would ever be free of that pain. Most of the time, pain only seeps through the narcotic and other chemical barriers set against it, yet it still can feel terrifying, not necessarily in the moment, but as a fated repetition. Sometimes at night I wake to it, and sometimes I fall asleep, drugged, in it. Sometimes the burning is accompanied by spasticity, as my left leg—or my right one—begins to stiffen and shake for a few seconds, and then relax, but relax for less than a minute, only to go into another spasm. The spasticity itself comes in waves: cramping, quivering, jumping, jerking my leg so that there is no sleep for me—or for Janet—without further pharmacological intervention. So I take a Valium, and lie there in bed, thinking about embodied life until I’m knocked out.
Coldness has pursued me from the first, in the hospital where Janet would find me in my overheated room, lying in bed, freezing. She would warm up flannel sheets in the clothes dryer down the hall, three at a time, and wrap me up in them. The warmth was wonderfully soothing, but so wretchedly transient, because the coldness emerges from deep within my body. I have long since left the hospital, but my circulation will always be impaired, my nerves damaged, and my hands cold.
If only pain could be vanquished. It is inescapable, unless you resort to illegal drugs, and even then pain waits on the other side. The cocktail of drugs against pain that I was given in the Hospital for Special Care included OxyContin, the artificial opiate that’s like heroin, only made in a lab rather than derived from opium poppies grown in Afghanistan. Now on the streets it’s often preferred to heroin—it’s uniform in effect and less likely to kill you. One time, and one time only, OxyContin was put into my body pulverized along with all my other drugs, which were given to me nightly through the gastrointestinal tube. As always during that time, I was in pain, cold, and desperate for some relief. Lying there, I felt a soothing warmth coursing through my body, warm honey in my veins, which spread and spread, engulfing me. So sweet. How unspeakably *lovely* are these drugs!—a thought I held onto for maybe fifteen minutes, floating along before sleep took me. If only I could take my OxyContin that way always! My mind was relieved from the fear that I would always be in pain, and when I’m buzzing, cold, or burning, I sometimes remember the sensation of being warmed through and suspended in no-pain, weightless. Then I long to be taken out of myself and the pain that plagues me, as I was that one time. If I were to crush and swallow my OxyContin tablets, pain would give way to a surplus of pleasure, sweetly running all through my body toward oblivion. I would drift away. Nodding off on OxyContin would, of course, in the end make my pain fatally unbearable. OxyContin is an extended-release formulation of the narcotic. If I crushed the tablets I would get a concentrated hour of bliss. But I would have used in an hour a dose meant for twelve, so I’ve never crushed a tablet, and they all remain whole in the pill organizer. As a result, I am almost never completely pain free.
Pain brings with it a dour companion, loneliness. I feel an un-assuageable loneliness, because I will never be able to adequately describe the pain I suffer, nor can anyone accompany me into the realm of pain. I’ve learned that the recourse to analogy is not solely mine, since pain is so singular that it evades direct description, so isolating because in your body alone. Crying, and screaming, and raging against pain are the sign of language undone.1 “As if” is pain’s rhetorical signature, which requires the displacement of metaphor to signify—its properties can be articulated only by way of something else, and the tropes of pain display the awkwardness of catachresis. My electrified neoprene skin holds me in its tight, suffusing embrace. The current races close to the surface, yet somehow also deeply penetrates the tissue. My fingers fumble. My toes curl upward.
If you went to the doctor’s office complaining of pain, you would be asked first to rank it, on a scale of 1 to 10. There is a chart, exactly the same everywhere, showing faces as emoticons—a smiling face, with an upward curving line for the mouth, dots for eyes, with happy eyebrows drawn above—that’s 1, feeling no pain. Ten, by contrast, has a sharply downturned mouth, pinched eyebrows, and dot eyes leaking tears. When I complained of pain in the hospital, the nurse invariably asked me to rate it on that 1–10 scale, an exercise I found quite confusing—the night of fiery, engirdling pain was the worst I’d suffered, so for a while any other pain felt relatively trivial. I would be buzzing and intolerably cold, but would only say, “5 or maybe 6.” That ranking yielded but one short-acting dose of oxycodone. Even though giving my pain a higher number could get me two, I was afraid of ranking it too high, for fear of not being able to go high enough when it got excruciating.
Before too long, however, my rankings crept upward, and I would ask for as much narcotic help as I could get, with inevitable side effects. I would fall asleep in the middle of speaking a sentence. It was January, and Lori had just returned from her motorcycle tour of New Zealand, by lesbians, for lesbians—we had talked excitedly together about this adventure in the summer of 2003, when I had the Triumph and she was riding a Kawasaki. She had taken ravishing photographs of the landscape, plus some great pictures of the bikes. I wanted to know about it all, but I struggled, frustrated and helpless, against a kind of narcotic narcolepsy. Yet I wanted those drugs. My bowels, already a great trouble to me since they’re slowed by paralysis, had an even harder time moving—but that didn’t matter. When electricity stormed through my body, I just wanted relief. The hardest part was waiting in pain after I pushed the button
on my call bell. A CNA would eventually show up to ask what I needed, and then she had to find a nurse with access to the locked-down drugs. The nurse inevitably would be working with someone else, and there was nothing to do but wait. When I suffered at the time of a shift change, I knew that I’d have to be patient. Moreover, HSC was routinely understaffed, as are all hospitals now. I learned to rank my pain quite high and to request all the meds that I could get, side effects be damned.
In the years just before I broke my neck, I was deeply happy. I was joyfully engaged with my lover, delighting in her body and my own. One afternoon together, we discovered an anatomy book in a downtown Tucson store with a miscellaneous stock—toys for kids, funky sunglasses, witty postcards, and suchlike. Among the stuff was an illustrated book anatomizing the human body, with lovely simplified drawings of the viscera, the skin, the spinal cord, the fiber of nerves coated with myelin, ball and socket joints, the skeleton, blue veins and red arteries, the heart with its four chambers, sexual organs with the hydraulic apparatuses clearly detailed. Lying in bed, we would look at this book and consider the myriad pleasures of the flesh. Embodied life was then an affirmation of fully realized pleasures integrated with a rich intellectual life. One evening, when we lay side by side, reading, I repeatedly interrupted her to exclaim about some sentence in my book, The Volatile Body, by the philosopher Elizabeth Grosz.2 I’ll always remember the warm, dry desert air, the lamplight, our proximity, and the book, because then the question of how to represent embodiment was a question of pleasure, first and foremost, and of the mysterious way language could amplify that pleasure. Now, representing bodily sensations is no longer a matter of finding words for the ever renewable resource of shared sexual pleasures, but of finding words for the beyond, the nowhere of pain that I suffer alone.
A Body, Undone Page 3