So when did I first get sick?
Getting sick was a process just as getting well was a process.
The most important things must happen slowly, incrementally. Just think — they are always painting some part of the Williams-burg Bridge! This is why moments of transformation are so exciting.
But what appeared as a transformative moment, the moment I awoke on a Sunday with numb feet, only felt like a transformative moment.
When
How long was I sick?
I got the tube pulled in May 1996. I recovered from my last acute CIDP relapse in November 1999. I recovered from my last severe depression in March 2004.
In May 2004, to treat my more or less constant steroid-induced hypomania, I stopped taking olanzapine, which I’d taken for five years, and began taking quetiapine fumarate.
And this may sound silly or arbitrary or vain, but after I traded olanzapine for quetiapine fumarate, I lost twenty-five pounds in six weeks. And those twenty-five pounds, which I’d been carrying since I’d first gone on steroids in 1995, was fat I couldn’t burn off with exercise or by restricting my food intake. It was from the drugs.
Once that nine-year-old fat was gone, I looked healthy even to myself. I ran and ran. I got lean and strong.
I was thirty years old, and most of the women I knew were fatter and curvier than they’d been as college students, and I’d thought for the past nine years that that had happened to me. That I’d taken on the shape of the adult woman my genes had programmed me to become.
It was a joyful and confusing time, 2004. I’d become accustomed to being one shape, and suddenly I was a different shape.
My gait changed. I became lighter on my feet. I had to buy all new clothes.
I became furiously happy. I ran a lot and drank a lot.
In 2004 I ran three miles for the first time since college, and even though I am even now still taking quetiapine to treat the hypomania, I’ve integrated the drug’s side effects into my life.
Also in 2004 I made a mistake in the midst of an unstable euphoria, and in 2005 I took my last drink. In penance.
And after the requisite horror of the first six weeks, the first six months, the first sober dates, the first sober sex, the first sober year, sobriety made me feel better than I’d ever felt.
I say 2004 is the year I got better, because it’s the year the biggest problem in my life changed from CIDP to drinking, and that’s a separate problem.
That’s why, even though my last CIDP relapse was in 1999, I say I was sick for nine years.
Corroboration
I met a woman who took steroids for eleven years — thyroid cancer — and I asked her when she felt she had recovered.
She said she spent her thirties expecting to die of thyroid cancer and then turned forty. A year later she began a weight-loss program.
When she decided her obesity was a bigger problem than her cancer, she knew the cancer was over.
Having spent my twenties expecting to die, I turned thirty and arrived in the afterlife with nothing left to do. I wrote to an older friend, asking him what I should do now that I was thirty, having spent all my twenties expecting to die.
He wrote back that I should shoot for thirty-one.
Just Visiting
Here I am, eleven years after the day I woke with numb feet.
My friend Isabel is sitting in a blue plastic-upholstered easy chair with a twenty-two-gauge needle in her left arm. Her arm veins are good. She’s receiving saline, steroids, and a designer immunosuppressant.
We’re making off-color jokes. About sex, not death. There are some sick people on the other side of the curtain.
When I played Monopoly with my parents, when I was very young, we were careful to leave our playing pieces on the margins of the Jail square when we were Just Visiting.
I’m having a good time, just visiting. I feel like a secret guest of honor. I’ve taken more of everything than Isabel has. The nurses don’t know it, but I do.
The nurse has just left, after connecting Isabel to a little glass jar, and we tell some more sex jokes, Isabel and me.
I’m sitting in a chair carried in from the waiting room. Isabel’s in the center of the room, in the reclining armchair with the blue scallop shell print, with her left forearm resting on a pillow in a grayish white pillowcase, vein up, and with a grayish white blanket covering her bottom half.
We trade driver’s licenses and make fun of the photographs and make more sex jokes. Isabel’s infusion rate is increased, and she falls asleep.
Then she wakes up, a little euphoric, and we talk about drugs. Which ones we’ve done, which ones we’re afraid to do, which ones we liked or didn’t like. Which ones we’re afraid might kill us. Then the death jokes start coming.
I’m having a good time, just visiting.
Memory
I argued with my father. He denied he’d read a book I lent him. In 1995 watched him read it.
Later he wrote:
There are whole spans of time in the 1990s I don’t remember.
That’s the only thing in my life that’s like that.
His tennis club later told him that in 1995 they watched him age a decade.
My mother wrote:
I don’t remember the hospital sessions, but I remember the morning of the ambulance ride when you couldn’t walk and I had to move you around on the desk chair. Never could explain to Nana about your disease. At the time she had the beginnings of Alzheimer’s and would ask daily how you were, then have me explain. Every day, the same.
Very isolated. Friends and family stayed away, perhaps in fear of catching the disease. Resented this but could understand.
When you were in the hospital I felt as if I had a little vacation because someone else was taking care of you.
Was always optimistic about your recovery. Guess that’s my personality. Never was resentful but felt sad for you and often wondered why this had to happen.
Only had one friend who seemed genuinely interested, who I could talk with and who would visit both of us.
Now I remember the navy blue jacket my mother wore almost every day she visited me in the hospital.
I remember how angry I felt when my parents visited me at seven in the evening, when visiting hours were almost over, and when My So-Called Life was on television, so instead of having two things to do in a day, I had to choose one or the other.
I remember a long time later, seeing Claire Danes in a boutique on the Lower East Side and going in and telling her how much I’d liked watching My So-Called Life.