The Two Kinds of Decay (9 page)

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Authors: Sarah Manguso

BOOK: The Two Kinds of Decay
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One day my neurologist declared I was of nearly normal strength and that my exercise regime, three slow thirty-minute walks per week, was far in excess of that of the general population.
 
I must have looked puzzled, because then he said,
But you aren't playing tennis or doing anything fun.
 
I wasn't. I didn't know when I'd lose all feeling in my hands and feet again, or need to save my strength for twice-daily trips to the bathroom, so it was hard to commit to a game of tennis, or even to a picnic, or a game of checkers.
 
I had moderate sensory deficit in my hands and severe sensory deficit in my feet. My hands and feet tingled and burned with fatigue and when I first woke, and there were numb patches on my shoulder blades and on my right calf.
 
I was still withdrawn from school and living with my parents, but my baseline strength was high enough that I could take a job at the bookstore where I'd worked in high school.
 
After a couple of weeks I had to quit so I could go to the hospital for a few days. The bookstore manager said I could have the job back when I was well again.
 
That happened twice, and the second time, the manager seemed to smile harder, to declare more vehemently that my job would wait for me. Maybe she feared I would sue her if she suggested my disability prevented me from doing the job.
 
It did, though. She'd already excused me from shelving new books. My arms weren't strong enough to lift a stack of hardcovers, and my hands weren't strong enough to wedge paperbacks onto the already full shelves. So I helped customers and punched sales into the register with my frail fingers.
 
After having to quit for the third time, I told the manager I wouldn't be coming back. I felt sorry for her. She had a kid by a man who had left her. She was angry except when singing along to “You're So Vain,” which is what we played every night at nine-fifteen, after the doors were locked and we were counting the cash in the drawers and calculating the X-totals and Z-totals at the front and back registers.
 
My college boyfriend called the day before his graduation. I said hello, and then I said I didn't want to see him or speak with him. I already felt the numbness creeping into my hands, my face, my tongue. The antibodies would stay there until I replaced my plasma or died.
Sever all complications now,
the numbness said,
no matter bow dear.
 
The worst hour was the hour between the moment of deciding I should be taken to Emergency and the moment I got in the car.
 
I used that hour to call the bookstore manager, my thesis adviser, my physical therapist, the home nursing coordinator, and anyone else I'd made plans with before admitting to myself I wasn't going to stay out of the hospital—not this time.
 
I could have gone to the hospital without making any phone calls—everyone would have understood—but I preferred pretending I had
chosen
to quit everything. Chosen to get sick again. That it was all part of my plan.
 
I lied into the telephone receiver as I sat in a wooden kitchen chair, my aluminum walker leaning on the table next to me.
 
I'd covered the plastic grips of the walker with bright green pressure gauze and, over the gauze, a thin stripe of black electrical tape. Racing stripes.
My three temporary central lines had been precarious and depended on my staying in bed, supine, because if I moved too much, they would fall out and I would bleed. They went in pretty close to my heart, so I wouldn't bleed long.
 
After my permanent line was implanted, I could go to the hospital for treatments without having to stay the night.
 
Along with plasma replacement, I was now trying a treatment that a new study had shown to be more effective: a massive infusion of gamma globulin, a molecular component of the immune system.
 
The study showed that gamma globulin seemed to make the immune system stop forming rogue antibodies.
 
Each of my gamma infusions was less than a quart of liquid, but the infusion of that quart lasted from eight to twelve hours because the human body cannot take concentrated infusions of that particular protein any faster.
 
A liquid flowed from a machine into my heart. The mechanism was very simple.
 
After the first infusion, the insurance company sent the bill to my father by mistake. The infusion cost the insurance company thirty-five thousand dollars.
 
Eight or ten times during the infusion I walked myself carefully to the bathroom, dragging the machine and the bag and the tubing, the end of which was sewn to the outside of my body.
 
And I walked back again, to the blue reclining lounge chair in the small room.
 
Sometimes another person was there. We all wore appliances in our chests. The tubes were sewn to us and connected to the tubes of the machines that moved the liquids into us.
 
Before then, if I had to ride a train for half an hour or stand in a line at a shop for five minutes, I picked something up, or turned to someone, or ingested something, so the time would be filled with what I picked up or took in.
 
And also since then—but maybe not quite so much.
 
I say “the time would be filled,” but the time was not so much filled as overfilled.
 
The time was already full before I put the new thing in. I overfilled my time, I think, to hide what was already there.
 
Some things are so horrible they need to be hidden right after they become visible. They are too horrible to be seen except very slowly, or in very small amounts. Or they are too beautiful.
 
There was a television set above my chair that received fifteen or twenty channels.
 
Here is a logical sequence of things to do in that small room. You arrive. You sit in the chair. You unbutton your shirt or take it off and put on a hospital gown that opens near your heart. You take the tubes in your hand and give them to the nurse. The nurse connects your tubes to the tubes of a machine that some fluid has been put into. The pump is turned on. You button your shirt around the tubes as best you can. You arrange yourself in a blue reclining chair. You press the button on the control that lights the television screen. You press it again until the screen changes to an agreeable picture. And you watch it. You get up and go to the toilet once every hour or two, pushing the pump on its casters. Once or twice, food arrives, and you eat. But mostly you read a book you have brought, or if you have not brought one, you watch the television, or you sleep.
 
After the first long infusion I felt different. Of course. The medicine was new. The experience was new. I was still in my first year of Latin, used to thinking hard before the meaning came. My parents came into the room to wheel me outside to their car and take me home. And they asked me what I had read and what I had watched on the television.
 
I had lain there in the reclining chair for ten hours, but I hadn't read anything or watched the television.
I was going to say
I had lain there for ten hours, waiting.
But I hadn't been waiting. I hadn't been anticipating the next moment. I think it was the first time in my life, which had lasted twenty-one years so far, that I hadn't done that.
 
I didn't know it at the time, but I was paying attention. I was not hoping I would learn how to do it, or despairing that I might not learn how to do it. I was unaware that I was learning or practicing or doing anything.
 
I was unaware I was doing anything except
nothing.
One day in Oncology Outpatient, I sat with a woman who was having a bag of blood transfused. She beat me diseasewise—she had cancer—but I beat her linewise, because she had a slim little Hickman and I had my double-lumen monster.
 
She showed me her bald head under her brown wig and said she liked to shampoo the wig in the shower as if it were her hair.
 
Her husband had planned to buy her a mink coat on the occasion of their twenty-fifth wedding anniversary, but when she got cancer, she got the coat. She called it her cancer coat. It was dark and glossy, like her wig.
 
And she shared that she had lost her hair four times and been in many kinds of pain, but she agreed with me that the worst part about being sick was not having enough energy to feel powerful and fast. Not enough energy to run away.
 
After we'd been talking for an hour or two, the woman asked me what my name was. I was glad I hadn't suggested it first. We were ready to do it now.
 
Her name was Barbara.
In December, eight months after the diagnosis, I decided I'd learn how to flush and dress my line. I still needed it. I was on my sixth month of periodic plasma exchange.
 
So I looked at the entry site with the bandage off, for just a moment, and that was enough progress for a few days.
 
But I got better at looking at the site, and my visiting nurse made me a booklet of three-by-five cards, tied together by a white string in the top left corner, that explained in steps how to flush and dress the catheter.
 
Even if I learned how to do it, my nurse would still have to visit me at school each week and look at the line, just to make sure nothing was wrong that I hadn't noticed.
 
I was as excited about learning how to care for my central line as my nurse was about visiting me at Harvard.
 
On my Nursing Visit Summary from December 21, 1995, Fran wrote:
Pt uses excellent sterile technique for flushing line. She also uses excellent technique for dsg
Δ
. Has some difficulties c
applying Tegaderm. Pt continues to feel stronger. One or two more f/u + pt should be independent c
care. Next visit 12/23/95.
On December 23, a different nurse wrote:
This visit to f/u apheresis care. Pt performs flushing + dsg
Δ
s error. She is very meticulous. Can be independent c
dsg
Δ.
I'd go back to school with enough medical supplies so I could care for my line whenever I needed to. This is what I brought:
1 large red biohazard container; 10 cc syringes; 5 cc syringes; 3 cc syringes; saline vials; heparin vials, vial spikes; needle covers; interlink caps; injection caps; adhesive patches in three sizes; gauze pads; nonsterile rubber gloves; individually wrapped “sterile field” kits, each of which included 1 sterile waterproof paper sheet, 1 pair sterile gloves, 1 sterile surgical mask, sterile gauze patches, alcohol swabs, iodine swabs, adhesive compound swabs, 1 roll sterile plastic surgical tape.
I'd meet each week with my nurse and three times a month with a representative from the company that delivered my medical supplies and fetched my biohazard container when it was full. It was a lot to do in addition to my treatment schedule and my classes, especially since I was feeble and couldn't walk far.
 
Every couple of days I made a sterile field on my college desk in Dunster J-22 and flushed and dressed my line. Once my
two suitemates, who are still my friends, sat on my bed and watched me do it. They watched and asked questions and listened.
 
I saved most of the flip-off caps from the vials of saline, heparin, and other solutions I infused. Each vial of solution was covered by a sterile bladder that could be pierced by a needle that drew the solution into a syringe. And each sterile bladder was covered securely with a plastic disc, its lip covering the lip of the vial, and each disc was stamped with raised letters that spelled FLIP OFF, because you were meant to press under the lip of the disc with the top of a thumbnail until the disc flipped off onto the floor or some other nonsterile area, so that nothing touched the vial's sterile bladder.
 
The FLIP OFF discs were chartreuse, pink, red, black, gray, white, or another color, depending on the solution in the vial.
 
I stuck the discs on my stereo and on every light switch in my suite. And I gave a lot of them to friends, who stuck them, with putty or with a small rolled-up piece of surgical tape, on their own light switches and on the switches of their electronic machines. Or in the middle of a wall.
 
I threw out at least a thousand discs. I wish I'd saved more of them. My old suitemates both still have a few.

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