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.