Sam the bulimic told me about Darlene’s repeated suicide attempts—the eating disorders trusted each other. We both smiled. Darlene knew what she was doing.
That night we all stayed up playing poker with candy for chips. It was Edith’s first game of poker. She was an old lady whose antique shop had burned down. I taught everyone Texas Hold ‘Em. We’d all taken our meds before starting and had to quit after the fourth hand.
My second Sunday on the psych ward was Halloween. We decorated the ward with spiderweb floss. Sam had three trays of pastries sent from his shop. The therapist from South Dakota danced a jig. Ed and Nico danced cheek to cheek. Darlene sang “Crocodile Rock.” Edith recited a Yeats poem.
On Monday, in art therapy, I glazed my trivet, a square of plaster set in metal, with rows of tiny heart-shaped tiles set in the plaster.
More Cause and Effect
After four days on the ward, I was allowed to sign out for a chaperoned walk around the parking lot. Three days after that, I signed out on a day pass. My parents came to get me and drove me to the computer store because I believed every document on my hard drive would self-destruct on New Year’s Day. I spent my day pass loading new software and manually reopening and resaving each one of my files.
That night I went back to the ward feeling good about my successful day off from lockdown. I’d avoided unhealthy behavior, as long as I didn’t count the obsessive reformatting of hundreds of digital text files. My success earned me the right to ask to be released.
I left the psych ward a few days after Halloween.
Instead of going home, though, I had to go to the other hospital, the one where I’d spent so much of the mid-1990s, because my severe depression, which I’d mistaken for a CIDP relapse, had triggered a CIDP relapse.
Uncertainty
In the twelve years since my diagnosis I have not owned a home or a car, or had any job that wasn’t temporary, or married or lived with anyone.
I belong to an artists’ union and pay for its group health plan with freelance money and with the money I inherited when my grandfather died.
I’m thirty-two years old and I’m an unwed, adjunct-teaching, freelancing renter. But New York is full of people like me. Everyone in the city I know who owns property or has kids has one of two things: a full-time job or rich parents.
There exist several rationalizations for my life. I’m holding out for a teaching job that suits me. My parents aren’t rich. A full-time office job would sap my energy. I don’t want to buy a place until I’m sure I won’t meet someone who’ll share the down payment with me. And each of these explanations is reasonable enough.
But I know the real explanation is that I haven’t lost the fear that at any moment I will have to quit my job, say goodbye to my friends, leave my home, and go to the hospital not knowing when, or in what condition, I’ll be discharged.
My disease has been in complete remission for seven years, but I still act as if I expect it to come back tomorrow.
Bones
In 1997 I stubbed my toe on the leg of a cast-iron chair and bandaged my purple foot and tore the insole out of a sneaker so I could fit my foot into it.
After watching me limp for a few days, my boss at the magazine made me go to a clinic, where they took an X-ray and announced I had three fractures.
In 2000, the first night I was back in New York after graduate school, I went to a roller-skating party at Chelsea Piers. I was curving left on my skates, at the narrow part of the oval rink, and lost my balance and fell backward. I caught myself on the heel of my right hand, and my arm hyperextended and my radius hit my humerus very hard and broke.
I’d felt the bone break, but just to be sure, I skated to a pay phone and called my friend’s father in St. Louis. He was an army doctor. He asked me how my arm and hand felt when I moved it up, down, around, how my fingers felt. Then he said I should go to an ER and have an X-ray taken.
I thanked him and thought to myself, Well, so I’ll have a broken arm for a while. I wasn’t going to another ER ward ever again. Not if I were conscious.
Five days later, while trying to chop carrots with an arm I knew was broken, I called my friend Vivian and said I wouldn’t be able to cook dinner after all. I had invited her over to prove my arm wasn’t just functional—it was good enough to julienne carrots. I hailed a gypsy cab and told the driver to take me to the nearest hospital. I should have taken the subway to a good hospital on the Upper East Side, but I didn’t know any better, so I wound up at Woodhull Medical Center.
In the Emergency waiting room were two men in orange jumpsuits, handcuffs, and leg irons, covered in blood, eyes swollen shut, and two or three police escorts for each of them.
A nurse asked me if I would please come into a ward to translate for a Polish patient, and I told her I didn’t speak Polish, and she stared at me until I noticed I was the only white person in the waiting room. The only pale white people treated at Woodhull were Polish immigrants from Greenpoint.
A doctor took an X-ray and gave me a sling and told me to come back in a week. I didn’t. The radial head fracture didn’t heal properly, but I don’t mind.
I’ve always had health insurance—if I relapsed without insurance, my parents would be homeless within a year—but other than that visit to Woodhull, I didn’t see a doctor for two years after I got out of lockdown.
In 2004 I fell on my kneecap while chasing my friend’s dogs in an ice storm in rural New Jersey. I drove myself to an orthopedist, skidding all the way, knowing I’d need surgery to fish out the bone chips. God, it would be horrible. I’d be admitted to the bone ward and everything would go back to the way it was when I was helpless.
But all the calcium supplements I’d taken, all the miles I’d run, had made my bones strong again, and I hadn’t broken my kneecap.
Even now, when I crack a bone on something hard, I still think I’ve fractured it, and in a flash I can see my wasted body in a bed with side rails, but I haven’t broken any bones since the night I broke my arm at Chelsea Piers.
Scars
For years I liked thinking of the ways I would erase all traces of the disease.
First I would stop taking the steroids.
Then I would have someone unclasp the impossible clasp of my MedicAlert bracelet.
Then I would go to physical therapy every day and my muscles would grow, and my heart and lungs would strengthen, and the fat deposits in my face and on my upper back would melt away, and I would run three miles along the Charles River, which was what I did at least twice a week during the month before the diagnosis.
I would apply expensive creams that would dry up the steroid acne.
I would have my teeth bleached of their tetracycline stains.
And so on.
Finally I would have plastic surgery for the thirty scars on my chest from the four central lines. I ruminated on that surgery obsessively. It was the last thing! The last thing, and then all evidence of the disease would be gone forever. No one, not even I, would be able to tell I’d been so sick.
I stared at the scars in mirrors. I could point to the four large ones without a mirror, without even looking down. I could practically feel them on me.
Once the disease went into its most recent remission, the one that’s still going on, I got fit again, just as I’d planned.
In 1996, I’d given all of my scoop-necked tops to my roommate, as it would have been rude to walk around with a big wound and a couple of tubes flopping around, scaring everyone.
For years after the line was out, I didn’t wear anything that exposed the scars.
But now that I look quite healthy, I like exposing them, and I don’t want the plastic surgery anymore.
The Point and the Ray
I grew used to being sick and looking forward to recovering.
Then I grew used to being well again for a short while, knowing I’d be sick again sooner or later.
Then I grew used to having no prognosis at all, because with
a mysterious disease, all things are possible.
My existence shrank from an arrow of light pointing into the future forever to a speck of light that was the present moment. I got better at living in that point of light, making the world into that point. I paid close attention to it. I loved it very much.
And then one day, my life was a ray again, and the point was gone.
I tried to find that point after the latest, longest remission began.
I thought of the point as a moment in spacetime where I could be free of all memory and all desire—a point that existed apart from everything before and after it.
Sometimes I can feel myself getting close to finding the thing in spacetime I lost by getting well.
I didn’t start writing this until my body made another decision.
The day before the decision I wrote, Can’t catch my breath all morning because of a wildness in my body that is like birds flying me toward his body.
The next day I wrote, I resisted as long as I could. A narrator must keep a safe distance from the story, but a lyric speaker must occupy the lyric moment as it’s happening. Or so it seems to me at this moment.
A crow stands outside my window all day, reminding me of the best thing about my life—that it ends.
I think my body’s decision shone a light on the memory that once my body steered me. Or that it steers me.
Music
How long was I sick?
I know that March 26, 1995, was the morning I awoke with numb feet.
But before that morning, I’d had a head cold stirring in my body for weeks—an infection for which my immune system had been generating antibodies on top of antibodies.
That head cold triggered the mechanism in my immune system that resulted in the syndrome called CIDP.
But it wasn’t the head cold—it was the great beauty of the Allegri piece that had made me keep the head cold in my body for so long. It was the promise of singing that Allegri solo that made me keep the virus from running its course. I had to put off the cough until after that performance, and instead of going away, the virus waited patiently to be allowed to make me cough.
But that story began in the seventeenth century, before Mozart was even born.
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.
The Two Kinds of Decay Page 10
