The Two Kinds of Decay (6 page)

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Authors: Sarah Manguso

BOOK: The Two Kinds of Decay
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Tabitha called nail
polish nail enamel
. Her daughter was ten or fifteen years older than I was. The daughter had lived out of her car for a long time.
 
Rock and roll,
I said after Tabitha told me that. Living out of your car was cool. It wasn't even her car. It was her boyfriend's car.
 
Tabitha never scolded me for saying stupid things. She told me her daughter had a skin-picking problem. Lesions on her face.
 
Lesions?
 
Just acne. Small inflammations. Tabitha liked using the proper medical terms for things. She told me the story of her first day of nursing school. She'd already read the text for the week ahead, and when the professor asked what
p.o.
meant in a clinical context, Tabitha said she raised her hand and said
per os
, by mouth, as if it were nothing at all. Rock and roll.
 
Tabitha manipulated the hell out of that apheresis machine. I hardly shook.
 
When my line stopped delivering blood to or from my heart, and the machine's alarm rang, Tabitha twiddled with the pump until my blood flowed again. The other apheresis nurses moved my body around, unwrapped me from my cocoon of heated blankets, and twisted the tubes around like secretaries playing with telephone cords.
 
The worst nurses injected heparin, which was the fastest solution of all—nothing makes blood flow like a shot of blood thinner.
 
But Tabitha knew that even when you're sick, when you no longer mind things that once horrified you, avoiding even one unnecessary subcutaneous injection can put you in a better mood.
 
Tabitha knew that machine, and she knew my heart—she could infuse anything into it, and I'd scarcely notice. And she brought those wintergreen candies with her as if it were part of my prescription.
 
Besides her daughter she only ever mentioned a deadbeat exhusband who'd abandoned her.
I returned to school after the first couple of hospitalizations, and both times I made appointments with the disabilities office.
 
A van would pick me up and take me to and from my classes and wherever else I had to go. The van was driven by a student, and it was free, and it never came when I needed it. I seldom went to class, and when I did, I was late.
 
The driver helped me into the van even though it wasn't in her job description and she knew I could sue her if I were injured while entering or exiting the van. Since she got in trouble for being late, she helped me. I took too long to drag my body up the van's three steps on my own.
 
At that point I was using two crutches. Crutches weren't a good solution to my mobility problem, generalized limb weakness that worsened distally.
 
I wasn't safely mobile on the crutches. I shouldn't have gone back to school. My doctors were doing the best they could, but they must have been delusional to think it was safe to let
me go back to Cambridge without a wheelchair. I was still poisoning myself a little more with every beat of my heart, barely able to manipulate my crutches, just waiting until I wasn't able to manipulate the crutches at all.
 
I remember walking out of Adams House one night, after dinner with a friend, barely able to stand upright, crutches splayed out to the sides. Someone behind me said something. I realized my crutches were blocking the entire patio, from brick wall to brick wall, and that no one could walk past me. And of course I was walking very slowly. And of course I was not doing what properly could be called walking. I was slumped over the crutches, which were braced against the walls.
 
The brick walls were all that was holding me up.
 
My friend carried me the rest of the way down the slate patio and onto the sidewalk and into the van.
My third hospitalization was fourteen days instead of the usual ten because the covering neurologist didn't schedule my five plasma exchanges right away. I had to wait a day or two before each one, and during those days the antibodies ate away at my nerve cells. By the end of the hospitalization I could breathe, but I still couldn't walk.
 
And so on May 26, 1995, the last day of my longest hospitalization, it was decided I would move to a rehabilitation hospital where I'd learn to walk and use my hands again.
 
My parents had already been to my college dorm and packed everything and brought it home. Somewhere in there was a small pipe and a few extra screens and a film canister full of marijuana buds.
 
They drove me to a northern Massachusetts town none of us had ever been to.
 
I was admitted and shown my room, which I would share with an old woman who coughed and whose medications and preparations filled our bathroom.
 
I had a bed, a night table, and a chair. There was a window I could look out of. Outside was Massachusetts.
 
A nurse came in to take my temperature with one of the new infrared ear thermometers that no one knew how to use yet.
 
She reported my body temperature as eighty-two degrees Fahrenheit.
 
I suggested that that was not possible since I was still living.
 
She took my temperature several more times and eventually recorded it as ninety-two degrees.
 
My parents and I went back to the room I would share with the old woman. She was watching television, in bed, in semidarkness. My father picked up my suitcase. My mother wheeled me outdoors to the parking lot and helped me into the car.
 
I would rehabilitate at home.
 
My father carried my pop-up trundle bed downstairs to the living room, under a window that looked out onto our road. I was brought a small round table from the screen porch. My mother made sure there was always some food on it, usually a protein drink.
 
I staggered, with the help of a walker or a person or both, to the downstairs lavatory a few times a day. There was a toilet and a sink there.
 
For my evening trip, my mother brought three towels and a new white plastic chair into the tiny lavatory. I sat on the chair and gave myself a sponge bath.
 
A nurse came every other day to change the dressing on my central line. My physical therapist came three times a week. I remember the day I was able to walk up four steps. That happened in summer.
 
Once I was able to get myself all the way up the thirteen steps to the second floor of the house, I moved into my childhood bedroom.
 
I remember being strong enough to crawl upstairs but not strong enough to stand upright. I'd crawl to my bedroom, crawl up onto my bed, roll over onto my back, and slide down onto my feet. Ta-da!
 
My bath chair became my shower chair. I used my parents' bathroom, which had a shower stall.
 
I affixed my infant mobile, with its soft yellow and blue ducks, to my headboard once I was upstairs in bed, to celebrate the humiliation my life had turned to.
The vascular surgeon always brought bad news: that I was going to have vascular surgery.
 
After the third time, after he recognized that I would brood and sometimes cry after he delivered his vascular news, he finished the consultation and walked out of my room.
 
The neurology team stood assembled outside the door, waiting to come in and practice examining me.
 
The interns and residents adored me. This was a small hospital, and a case like mine was extremely rare. Months later I'd learn that there were only six people on the entire East Coast with my disease who were available to take part in a drug study.
 
That day, after watching me weep a little, and after walking outside to find a cluster of residents and interns waiting for him to finish talking to me, the vascular surgeon said something to them.
 
He told them I was
the kind of patient who took things very hard
. My door was still open. He didn't care if I heard him say it.
 
He was about to do a third vascular surgery on me, and he knew I was twenty-one years old, and he knew that every time I recovered from a relapse of my disease, I was told I would stay well that time, and he knew I never stayed well.
 
And so the fourth time the vascular surgeon came into my room, expecting me to have remained the kind of patient who took things very hard, I had been practicing.
 
In my imagination I had been practicing the delivery of a line from a movie I loved. The line is spoken by a juvenile delinquent.
 
I had been practicing, and I didn't say a word while the vascular surgeon gave his usual speech. His central line speech.
 
I didn't say anything, and then he asked me if I had any questions, any concerns. He seemed to want me to continue to be the kind of patient who took things very hard.
 
But without even looking at him I said,
What can I say
—
I'm thrilled.
 
He laughed like a high school kid, the way the science fair winner laughs when the guy with the police record insults the science teacher.
After twenty-odd apheresis sessions, the veins in my arms had grown too scarred to access, and my body had grown too frail to tolerate having thick temporary catheters implanted in my chest and pulled after one week. I'd already had three of those.
 
And so it was time for a permanent central line.
 
But that would require a long surgery, with general anesthesia, which I wasn't in any shape for, so I couldn't get the permanent line right away.
 
I'd been taking azathioprine for two weeks, a cytotoxic chemotherapy drug often used as an immunosuppressive. It had killed a lot of my red blood cells and a lot of my white blood cells. I was anemic and susceptible to infections. That was the cellular problem.
 
Then there was the plasma problem. Throwing away my plasma got rid of the devil antibodies, but my plasma also contained other cells and proteins that the blood needs. If they're missing, you get trouble.
 
My fibrinogens had disappeared almost completely. The hospital was doing a good job of removing my plasma and tossing out the fibrinogens with the bathwater.
 
Fibrinogens help knit the plasma together into a clot. When there aren't enough of them, you will bleed.
 
The evening before my surgery, my fibrinogen level was low. We'd been waiting for my fibrinogens to regenerate. But in order for that to happen, we had to take time off from replacing my plasma. So while the fibrinogens were coming back, the antibodies were coming back, too. So I was filling my blood with poison again, at the same time it was filling with the molecules I needed to tolerate the surgery.
 
My fibrinogen levels were checked all night, but by morning I still didn't have enough.
 
Two hours before I was to go in to surgery, an Irish doctor appeared. His brogue was beautiful and thick. He had been called to give me a shot of vitamin K, which would help my blood clot during the surgery.
 
He shot it into my right triceps. God, was he handsome.
 
The injection site stayed sore for five years, but not once during those years did I mind remembering the Irishman who had shot me full of K.
The morning of my fourth vascular surgery, I was awakened earlier than usual.
 
A new man entered my room. This is what he said to me, very slowly:
 
Hello. My name is Juan. One of my jobs. Is to deliver patients. To the operating room for surgery. Are you ready.
 
He looked at me and I saw that he believed his job, my life, and our time together were important.
 
And so looking back at him I said,
I'm ready.
 
He reminded me to remove any jewelry or watches, and he took my watch off my wrist because my hands were paralyzed and I hadn't remembered to ask a nurse to do it for me the night before.
 
And then he transferred me from my hospital bed onto a gurney and wheeled the gurney out of my room, down the hall,
into the elevator, out of the elevator, and into the presurgical ward, and then disappeared, without saying a word and standing up very straight the whole time.

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