Authors: Sarah Manguso

The Two Kinds of Decay (14 page)

BOOK: The Two Kinds of Decay

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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 yearsâthyroid cancerâand 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.

I remember that after an IV catheter in my arm got pulled out, I got infusions in my hand instead of my arm so I could keep a better eye on the tubes.

I remember meeting with my Latin professor and knowing he thought I was dying and not correcting him, and letting him tell me everything that would be on the exam.

I remember him conjugating a verb and saying
masculine and single
instead of
masculine and singular,
and how he blushed.

I remember my college boyfriend reading
Le Monde
in the Adams House dining hall and carrying Kierkegaard books in his pockets, and how they stuck out just enough that you could see it was Kierkegaard.

I remember learning the combination to the lock on the Fellows' liquor cabinet at the Signet, and feeling as good as I ever had, telling someone else the combination.

Relevance

If you could know anything about my disease, what would you want to know? Did it change me?

I don't know if it changed me. It happened in spacetime, which is a bad place to conduct a controlled experiment. Spacetime has too many variables already. It's not even a controlled experiment by itself.

I don't know if I changed because of my disease or in spite of it.

What if I don't mention the disease for eleven years? Was I thinking about it all that time? What if I talk about it constantly for eleven years? Am I avoiding thinking about something else?

Did anything important happen to me before the disease happened? After it happened? How important was the disease? More important than getting my driver's license? Having sex for the first time? Getting put in lockdown? What about when I moved to Iowa? What about when Victor died?

What about when I crashed my mother's car?

I am quite sure I crashed the car so everyone would see I wanted to die. I wanted to die, but I didn't want to tell anyone. So I took a left turn through a double lane of oncoming traffic, only one lane of which I could see, and I hit a van full of kids.

Their mother came out laughingâwas she laughing? Why have I made her laugh in this memory? She knew I was at fault. I knew I was at fault. And the police knew.

I think they also knew I wanted to die. I was a frail-looking twenty-five-year-old woman driving an immaculate fifteen-year-old black BMW sedan and I'd just hit a van full of kids, and I knew I looked sedated but I couldn't help it, and the two officers who came to the scene were very gentle with me. They asked me if I were all right. I wanted to die, but I wasn't hurt, so I said I was all right.

I could feel my face lying on top of my skull. I could feel it not moving. I could feel my mouth move when I spoke, if I concentrated.

One of the officers explained very kindly that I was at fault by definition, as I'd been the one turning into oncoming traffic. It was all right. My mother's car was wrecked. I'd never been in a wreck before. I wasn't concentrating on being in a wreck. I was saving the wreck for later.

Then I went into the library, returned the books I'd brought to return, stopped in the alcove, put a quarter into the pay phone, and told my mother I'd been in an accident.

Then I drove home in the wrecked car. Did I drive home in the wrecked car? Or was it towed, and did someone pick me up and drive me home? I don't remember.

No, I do remember. I remember driving home in the wrecked sedan, but it had grown to the size of a Viking ship, and all other traffic had disappeared, and the roads had disappeared, and there was only me in my broken ship, floating home.

I wouldn't have to say a word. My friend Shane had just died. I could just have gone home in my broken ship, the ghost of my dead friend hovering above it, and everyone would know I wanted to die, too.

And the relevance of my disease would be obvious. Everyone would see that it was the culprit, that it was why I wanted to die.

I don't know how to write a novel. I like to ask writers who write novels how they do it. How they write something longer than what can be held in the eye comfortably, at middle distance.

How can I stop thinking about the disease long enough to write about anything else? How can I stop thinking about everything else long enough that I can write about the disease?

My friend Isabel says,
When you're writing even a short novel, with at least a couple of subplots, and God only knows how many characters, your brain holds the volume of it beyond the ability of your consciousness.

Of course.

Measuring

A nine-year period began and ended.

I measure time by the movement of this planet. As any sane person would.

I tend to forget that my measurement of time is designed to distract me from what's really happening.

I tend to forget I'm walking on the surface of a soft mass on fire on the inside, a surface warmed and lit by an explosion taking place ninety-three million miles away. An explosion that started at some point and will end at some point.

I tend to forget that I rose out of this explosion andâdespite my feeling I am unique from itâwill someday fall back into it.

Why nine years?

Why do I need to read sixty minutes in the morning, and swim twenty laps in the afternoon, and write a thousand words at
night, in order to feel that a twenty-four-hour period has been well used?

What are all these numbers for? What do they measure?

What do I think I'm clarifying by the act of measuring? What does measuring make
clearer
?

At the beginning there's conception, gestation, the growth of the brain in the womb. There's the crowning, the first breath, the naming.

At the end, unless you are vaporized in an explosion, the heart stops and the blood still moves in the veins, then the blood stops and the tissues still live, then the tissues die slowly, and at some point the last neuron in the brain dies. How long this takes depends on too many variables to measure.

My Jewish grandmother lived to be eighty-five. She thought she'd been born on December 10th, but when we found her birth certificate, it seemed she'd been born at home on the 8th or the 9th. There was snow in Boston, and the 10th was the first day anyone could get out to report the birth.

I have two letters she wrote to me at summer camp in the 1980s. One is dated
Tuesday 6/29,
and the other,
July 4âHappy Independence Day.

What times aren't open to debate? What times are clear?

Wars end at particular times. They end when the document has been signed. They end at the first moment the document can be described as
signed.

But it isn't so much that a war ends in a single moment as much as people decide to agree the war has ended in a single moment. And so the measurement becomes unassailable. Not accurate. Just unassailable.

Nothing happens in a moment. Nothing happens quickly. If you think something's happened quickly, you're looking at only a part of it.

Firing a rifle shot seems to happen quickly, but what about the movement of the trigger finger? What about the decision to fire the rifle? What about all your careful target practice? What about everything in your life that happened before you decide to fire that rifle?

How can you separate the incidental from what was necessary to your decision to pull the trigger?

Nothing happens in an instant. Nothing starts happening and nothing finishes happening. History doesn't begin anywhere. And it doesn't end.

Why is it important to me to know the beginning and end of this particular decay I think I'm writing aboutâwhich is just part of my own whole decay?

And couldn't the decay be called by many other namesâfor instance, my life?

BOOK: The Two Kinds of Decay

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