The Two Kinds of Decay Read online

  I already hated my neurologist by then. Every time I’d seen him after a hospitalization, he told me to pack my things and go back to college because the disease was gone.

  Despite witnessing my first four relapses, my neurologist seemed to believe that plasma replacement would make my disease go away.

  I could stagger to the bathroom twice a day with a walker and with one of my parents holding me partway upright. That, apparently, was good enough.

  I think it was because he was tired of being told by a twenty-one-year-old girl that he was wrong that my neurologist recommended me to a doctor at another hospital.

  The New Neurologist

  After examining me and listening to me for less than five minutes, my new neurologist said I didn’t have Guillain-Barré syndrome but a rarer, chronic form of the disease, called chronic idiopathic demyelinating polyradiculoneuropathy. He was right.

  He recited a list of the treatments I’d have instead of apheresis, in chronological order of necessity. If steroids don’t work, he said, we’ll try gamma, and then we’ll try interferon, and since azathioprine didn’t work, we’ll try cyclosporine, and if that doesn’t work, we’ll try cyclophosphamide, and if that doesn’t work, there are lots more drugs we can blast your immune system with.

  He said some of the drugs had bad side effects, but that a twenty-one-year-old person could handle a few side effects, and that a twenty-one-year-old person should not waste time with any treatments but the most aggressive.

  He didn’t approve of plasma exchange, which just tidied up the immune system’s spill of poison into the blood without stopping up the leak that caused the spill.

  He was like a Black Panther of pharmacology. By any means necessary. I loved him immediately.

  I never saw my old neurologist again, and in a few years I heard that his partner, who’d covered my case for him sometimes, had lost his license after being convicted of having had sexual relations with a number of his elderly patients. Their practice was shut down, and I don’t know whether my old neurologist moved to another hospital or quit practicing entirely.

  Steroids

  It’s hard not to speak in clichés about corticosteroids.

  They are powerful and make you feel better than it is possible to feel without them, and the more of them you take, the better you feel.

  They are poison if you take them at a high dose for too long, and too long is generally considered more than six weeks. I took them for four and a half years.

  In August 1995, when I couldn’t stand up, I sat in a wheelchair in my new neurologist’s office as he wrote me my first prescription for steroids, and I took 60 mg of prednisone the next morning, and 60 mg the morning after that, and that was the morning I got up and walked all the way from one end of my parents’ house to the other and never needed a walker again.

  I was finally able to eat a whole meal and no longer needed to drink two protein drinks per day. Not only that, but my parents and I were able to go out to restaurants, and I could walk to the table using just a cane.

  And every meal, no matter how simple or cheap, tasted better than any other meal I’d ever eaten, and every piece of music I heard was more beautiful than any other piece of music I’d ever heard. This sounds like trite shorthand, but it is not.

  I remember feeling well after having begun to take steroids, and how happy my mother was to cook a hamburger for me. I remember eating it. The ketchup, the mustard—I can taste the condiments.

  I’m not talking about the way ketchup and mustard taste in general. I mean I can taste the particular condiments that were on that particular hamburger I ate in 1995.

  I started staying up until four in the morning with a pile of books and magazines, and sleeping until seven, when I’d climb downstairs and make myself breakfast.

  Sometimes I woke up screaming. Or, to be more precise, I’d waken from a dream of being in a death camp or a bad fire, so frightened that when I opened my eyes, I thought screaming might distract me from my fright. So I was always wide awake before I screamed.

  And since my diaphragm muscles were quite strong by then, I could scream loud enough to wake my parents.

  My father sometimes came to see if I were all right, if I had torn out my catheter as I’d slept, but only one of the stitches ever got torn out.

  The catheter never got torn out in my sleep because I’d learned how to roll over slowly, even in deep sleep, while cradling the catheter in my left hand.

  And I rolled over like that for a long time after the tube was pulled.

  The Sixth Sense

  The sixth sense is not psychic vision but proprioception, the perception of where the body is in space.

  In October, during the first year of the disease, having already lost sensation, movement, and all my reflexes, I lost my sense of proprioception. Every night before sleep, my mattress folded into undulating spiral shapes and I stuck to the walls and somehow my head got to be five feet higher or lower than the rest of my twisted body. As long as it was dark, I stayed lost in imaginary space.

  And so in October my neurologist added a proprioception test to my regular neurological exam.

  This is what the book tells you: you have the patient close his eyes, and then you grab one of the patient’s big toes and bend it either up or down, and you ask the patient whether the toe has been moved up or down.

  But the book doesn’t explain that the test is easy to cheat on. All you need to do is to feel the pressure on the big toe from the tester’s hand, and if the pressure’s on the top of the toe, then the toe’s been moved down, and vice versa.

  So I told my neurologist that the test was useless, and that in a properly administered proprioceptive sense exam, the pressure on the top and the bottom of the toe must stay equal and consistent throughout, so there won’t be any clues from which to cheat.

  After my neurologist learned that, the test was more fun, because I never knew how I’d do.

  Hobbies

  Six months after the diagnosis, I decided that if I had enough hobbies, it wouldn’t matter if I stayed sick.

  She’s sick, I imagined people would say, but she has so many hobbies.

  My father drove me to a nursery where I bought a bonsai tree, and I took all the books on bonsai out of the local library and filled a notebook full of notes.

  I found the book of chess openings my famous chess-playing great-uncle had given me years before, and started memorizing. The Ruy Lopez opening. The English opening—my favorite one because it has only two moves.

  The bonsai tree got uglier and barer and browner, and I let it die.

  I remember thinking at some point that I’d already taken on hobbies beginning with A, B, and C, and how I’d eventually have one hobby for every letter of the alphabet, and then I would be busy.

  I remember bonsai and chess, but I don’t remember what the hobby that started with A was.

  Hobbies grow exhausting, it turns out, just like any other obligation.

  I was at a restaurant years later with a famous writer just back from the airport. On the plane he’d sat next to a woman who’d asked him what his job was, and he’d said I’m a writer, and the woman had waited a few moments and then asked him what his hobbies were.

  I don’t know what the famous writer said to the woman, but at the restaurant, he just said Hobbies, can you believe it? I’m a writer. I don’t have hobbies. My hobby is writing.

  My mornings were occupied by bathing, eating, drinking a protein drink, having my central line dressed and flushed by the visiting nurse, and exercising pathetically little with the visiting physical therapist. After the fourth or fifth hospitalization, I remember just lying in bed for hours every afternoon. I had too much to think about to do anything else. It must have looked as if I weren’t doing anything, but I was very busy.

  After I’d spent a few afternoons lying in bed looking as if I weren’t doing anything, my mother and father came into my room with a small box wrapped in plastic. It was a
computer program. Chessmaster 3000. My parents didn’t buy me surprise gifts often. And so instead of gratitude I felt panic.

  My parents must really think I’m going to die, I thought.

  A Gift

  Very late one night, in the fall of my eleventh-grade year, five years before the diagnosis, I unlocked the front door of my parents’ house and went inside and closed the door quietly and locked it behind me, and turned on the hall light and tiptoed up the thirteen steps, and turned off the hall light, and felt my way along the railing that surrounded the stairs, and walked through the dark doorway of my room, and felt in the dark above my shoulder, to the right of the doorway, for the antique light fixture that had been installed in the 1920s when the house was built, and turned the small switch that felt like the head of a small smooth screw.

  And hanging from the gooseneck of the light fixture was a dress hanger, and on that hanger was a black velvet cocktail dress with a V-neck and black velvet straps. And on that dress, just below the point of the V, my mother had fastened her rhinestone turtle pin, and I would wear that dress to the Wellesley Cotillion.

  I put it on and it fit.

  I made an appointment to have my hair French-braided at the salon downtown. My mother bought me a pair of black pumps with a small heel.

  The Wellesley Cotillion took place every December at Wellesley College, and all the eleventh and twelfth graders whose parents lived in Wellesley were invited.

  I say “whose parents lived in Wellesley” because the cotillion was a mixer for private school students who attended New England’s various prestigious boarding schools. Most of the town’s high-school-age students attended those schools.

  The dance was first held in the 1940s, and it was called the Christmas Cotillion, and the public was not invited. It was very exclusive. You had to attend a certain very proper dancing school, which had admission requirements of its own.

  In the late 1950s, public school students were invited for the first time.

  None of us from public school in 1990 had been to a cotillion or attended an event that required formal dress—the freshmen and sophomores had only an informal dance, and the junior prom wasn’t until spring. None of us had yet faced a receiving line.

  In November the juniors at Wellesley High attended a special assembly where we were taught proper comportment at the cotillion. We were told to shake the hand of each man and woman on the receiving line, to make eye contact, and to state our names clearly.

  There I am, about to face the receiving line, about to walk across the stage of my life in my town in my velvet dress. About to start learning why I don’t belong here, why I don’t want to belong here, yet do belong, whether I want to or not, in the torrent of people who walk through history in one direction.

  The New Medicine

  The first controlled study I took part in tested the efficacy of injected alpha interferon, an approved treatment for leukemia.

  It was first-round research. And so everyone in the study—there were six of us—got the drug. There were no placebos.

  I was excited about injecting myself with it.

  I was excited until I learned that it was just a subcutaneous shot, not an intravenous one.

  Years earlier, a doctor had told me a story about his internship at Bellevue Hospital in New York in the 1960s. During his rotation in Emergency, he was unable to find venal access in a patient whose arm veins were scarred from shooting heroin. So the patient said, Why don’t I just do it, and took the needle, and hit a vein on the first try.

  For this drug trial, I was given several little vials of interferon and a handful of syringes tipped with very small needles. Maybe an inch long.

  Three times a week for six weeks, I sterilized the top of one of the vials with an alcohol swab, drew 300 cc of the serum into one of the syringes, flicked the syringe to get the bubbles out, wiped down a spot on one of my thighs with another alcohol swab, grabbed the flesh on both sides of the spot and pinched it with my left hand, then with my right hand put the needle in as far as it could go. Then I pushed the plunger all the way down, waited a moment, withdrew the needle slowly, and discarded it in my big red SHARPS container. The whole thing took less than a minute. It wasn’t nearly dramatic enough that I could enjoy it.

  On top of that, the side effects from the drug were the third worst of all the drugs I’d been given.

  Interferon’s main side effect is described as flulike symptoms.

  I remember my father standing in the doorway of my room as I shook with fever in my bed. He looked a way I’d never seen him look before.

  I wrote this in my journal on October 3, 1995:

  My father cannot look at me, and when he finally speaks to me, he does so as though he is speaking to someone on the verge of death—that is, on the verge of death, and we’re in a really bad play.

  Each time I gave myself my shot, I wanted to do it in front of someone. Did I want parental approval, encouragement that even though the injections were easy, I was doing something hard?

  I walked into my parents’ bedroom on those shot nights, carrying my works, and if my father was there, he’d get the look and leave. My mother stayed to watch the shot.

  Twelve hours after my first injection, I was able to get out of bed. The worst of the fever was over.

  But for six weeks had what seemed to be a bad cold and cough, and a slight fever, and the medicine didn’t do anything to help me stop secreting the antibodies, so I had to have apheresis all through the interferon treatment anyway.

  And my data were removed from the study since so much of the drug had been thrown away with my plasma. On paper I hadn’t been on the drug at all.

  Certainty

  One day my neurologist declared I was of nearly normal strength and that my exercise regime, three slow thirty-minute walks per week, was far in excess of that of the general population.

  I must have looked puzzled, because then he said, But you aren’t playing tennis or doing anything fun.

  I wasn’t. I didn’t know when I’d lose all feeling in my hands and feet again, or need to save my strength for twice-daily trips to the bathroom, so it was hard to commit to a game of tennis, or even to a picnic, or a game of checkers.

  I had moderate sensory deficit in my hands and severe sensory deficit in my feet. My hands and feet tingled and burned with fatigue and when I first woke, and there were numb patches on my shoulder blades and on my right calf.

  I was still withdrawn from school and living with my parents, but my baseline strength was high enough that I could take a job at the bookstore where I’d worked in high school.

  After a couple of weeks I had to quit so I could go to the hospital for a few days. The bookstore manager said I could have the job back when I was well again.

  That happened twice, and the second time, the manager seemed to smile harder, to declare more vehemently that my job would wait for me. Maybe she feared I would sue her if she suggested my disability prevented me from doing the job.

  It did, though. She’d already excused me from shelving new books. My arms weren’t strong enough to lift a stack of hardcovers, and my hands weren’t strong enough to wedge paperbacks onto the already full shelves. So I helped customers and punched sales into the register with my frail fingers.

  After having to quit for the third time, I told the manager I wouldn’t be coming back. I felt sorry for her. She had a kid by a man who had left her. She was angry except when singing along to “You’re So Vain,” which is what we played every night at nine-fifteen, after the doors were locked and we were counting the cash in the drawers and calculating the X-totals and Z-totals at the front and back registers.

  My college boyfriend called the day before his graduation. I said hello, and then I said I didn’t want to see him or speak with him. I already felt the numbness creeping into my hands, my face, my tongue. The antibodies would stay there until I replaced my plasma or died. Sever all complications now, the numbness said, no matter bow
dear.