A woman rides her motorized chair up a ramp and onto a stage. Ten feet away from the podium, she parks her chair, gets up, and walks a few steps, very slowly, to accept her award.
What a sickening prop.
But people forget a woman in a chair is strong enough to walk a few steps each day and has saved this day’s steps for the acceptance of her award.
Chair or no chair: a binary relation. But the vicissitudes of moving the body around are infinite. You never know what a person in a chair can do.
I saw two young women at a lecture once, one of them in a wheelchair that looked like a piece of expensive Italian furniture. Her girlfriend sat down and said You want to do a transfer? and the girl in the chair said Yeah and maneuvered her chair next to the bank of auditorium seats, placed her hands on the arms of the first seat, and swung herself into it with her ropy upper body. Then she reached over and folded up her hot little wheelchair.
Other than the ones I used in the hospital, I never got my own chair. When I couldn’t walk I stayed in bed, because it was always assumed I’d get better soon, and the chair was for people who were done forever with walking.
I was afraid of the chair. It would indicate I wasn’t going to get better. And my doctors didn’t want to believe that any more than I did.
Chair or no chair: a binary relation. Bad or good, sick or well, hopeless or hopeful.
This is how I described paralysis to my friends: Sit down right next to me on a bench or a sofa, me on the left, our four thighs in a row. Lift your right thigh and put it back down. Then the next thigh over, lift it and put it down. Then the next thigh after that.
That feeling of trying to lift someone else’s thigh with your own mind is how it feels to be paralyzed.
Though my worst relapse paralyzed me from the thighs down and weakened me everywhere else, most of my paralysis was always in the process of getting either better or worse. The state of my health changed daily.
During a week of plasma exchanges, I’d be able to move a little more each day. That’s how quickly the myelin regrew. If I were waiting at home to get sick enough to be readmitted to the hospital, I’d be able to move a little less each day. That’s how quickly the myelin was destroyed by my anxious blood.
My feet were often completely paralyzed, because they’d go first and weaken the most. To this day, scratching my arches, even lightly, is excruciating, but the toes and the rest of the sole can take pins. There was some permanent damage, either to the axons or to the myelin or both. Now my feet are both hypersensitive and hyposensitive.
I was always being moved around, given physical therapy and having my bedsheets changed under me, so most of the big parts of my body got at least a little movement each day.
But the toes, when one is lying down, do not get a lot of attention. After a week or more with paralyzed feet, my toes needed to be moved right away. I couldn’t bear the stillness anymore. It was like a full bladder. When my parents visited that afternoon, I asked my father to move my toes. He grasped one set of toes in each hand and bent them up and down and all around in a bunch for a few minutes. And either he or my mother did this every day they visited until I was strong enough to sit up and reach my toes myself.
Death
When I told my hematologist I was worried about dying, he smiled and said, Look, here is the smallest violinist in the world playing you a Dvo
ák violin concerto, as he rubbed his index finger against his thumb.
A cancer patient on the ward, a girl a year or two older than I was, had a catheter just like mine, except tiny. Like the thickness of a piece of angel hair pasta instead of the thickness of two drinking straws with big clamps at the ends. And that little piece of pasta could be rolled up and sealed under a plastic patch, and that girl could go swimming.
And she did — in the ocean, on Cape Cod. And got a blood infection, because she had leukemia.
But our hem-onc didn’t tell me she was a nuisance for having ruined her catheter and for having made the surgeon implant a new one, and our hem-onc didn’t tell me the girl was dying, or that he had wanted her to swim again before she died.
He didn’t say it, but I am pretty sure he told her to go to the ocean and get in it and let the water go above the access site, and that if the briny water leaked through the adhesive around the edges of the plastic patch, to stay in the water and swim until she was tired of swimming.
Our hem-onc just told me she had swum in the ocean with her catheter, and that she had got it infected. And he smiled the way we do when we talk about naughty affairs or petty crimes that people get away with.
The fear of death came once, and that was it. It was like getting an immunity to the chicken pox. It never goes away. I am learning not to remember it.
The first time I was brave. I kept grief at bay for a long time. The moment I gave up, then everything — horror, grief, all of it — came in a great rush.
Every other time, I fell into it as if into a soft mat. I yielded instantly, thinking It is here again, this certainty I will soon die, this thing I already know that I have not forgotten for a single minute.
Cavities
One day, while I was mostly paralyzed and my muscles were atrophying repulsively, two nurses scooped me up into a hammock attached to a scale and told me how much I weighed.
I’m half an inch shy of six feet, and in the hammock I weighed a hundred and ten pounds, and that wasn’t even my skinniest.
People brought me rich foods to eat, but there was no point. Extra food would turn to fat in me, as I couldn’t move to stimulate any muscle growth.
And the fatter I got, the harder it got for my muscles to move my body.
Not all of the nurses understood this. Particularly not the tubbier ones.
Still, I wasn’t avoiding rich foods. I ate french fries all day. I ate as much as I wanted, which still wasn’t much.
I did care about my teeth, though. Having my teeth drilled seemed an avoidable inconvenience.
And so at night, after my teeth had been brushed, when I was offered a cup of soda for my bedside table, I always asked for diet instead of regular.
And sometimes I got the look. The look that says Oh you goddamned malingering brat, starving yourself to get attention while in the next room there are people dying.
For a while I explained that it was to keep from getting cavities, as I was unable to manipulate a toothbrush to clean my own teeth after drinking a syrupy sugar drink, but then I gave up because of course an anorectic would say that.
Corticosteroids, which I took for a long time, eat away at the skeleton, and it’s not uncommon for the teeth to rot a little. And that’s not even taking into consideration that my teeth weren’t being brushed very regularly or very well.
But it’s been twelve years since my diagnosis, and I still don’t have a single cavity.
Hair