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
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.
Vitamin K
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.
Juan
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.
Fear and Fright
I woke from the long surgery and saw my double-lumen permanent line and felt frightened. It looked like something I should pull out—a white dart, a poison arrow—but I couldn’t pull it out. It was sealed under a clear plastic patch.
For the first day, doctors monitored the site through the patch, which covered part of my chest and my right side. The wound was fresh, and despite the pressure from the patch, the wound oozed.
The patch kept the ooze contained.
I had read Freud in school. He distinguishes fear, a state of worrying anticipation in relation to a definite object, from fright, the momentary response of our mind to a danger that has caught us by surprise but is already over.
And so when I looked at the plastic patch, I knew that what I was feeling, clinically speaking, was fright.
But the feeling didn’t subside. Its sharpness lasted. So I looked down a second time, thinking the sight would no longer be frightening.
It was. And for hours I lay there, weeping in fright. Not fear. Fright.
The night nurse came in every couple of hours. After the second or third visit, when I was still crying from fright, she scolded me. But I wasn’t sad. I was scared out of my mind.
So she gave me a tranquilizer.
I became addicted to them immediately and took one every night for weeks, and it wasn’t long before I started needing more of them than the nurses wanted to give me.
Color
After I left the hospital with my permanent line, a nurse visited me at my parents’ house every two days.
She (or, rarely, he) made a sterile field on the table next to me and peeled the seal of the patch covering the dressing on the entry site, and lifted the dressing. On the first day I said it itches and the nurse asked where and I said I didn’t know because I wouldn’t look at it with the bandage off. There were eight shallow stitch wounds below the big wound, in-and-out times four, but I didn’t know that yet, and I could not touch the itch or point to it as it was in a sterile field, but the nurse hit the itch with a swab on the first try, and when I cried in relief she kept hitting it and I kept crying.
The stitches lasted eleven and a half months, which was as long as they needed to last before the line was removed.
This line was a Hickman line—the catheter entered the target vein but was first tunneled under the skin for a few inches, so the open wound was only a skin wound. This reduced the risk of infection. The hole in the vein was protected by my skin.
Every two days the visiting nurse flushed the line and dressed the wound and filled out a one-page summary form.
One of the categories in the summary was Color. For a while I didn’t look at the copy of the form th
e nurse left in the white loose-leaf binder that had been provided by the home nursing organization. But then I did and saw that for the first two weeks I’d been home, the nurse had written the word pale on the line next to the word Color.
The next time she came, I protested when I saw her write the word pale. But she wouldn’t change it.
The next time she came—she didn’t come again. It was a new nurse, Fran. I told her, as she began to fill out the form, that the other nurse had written that I was pale, but that I’d always been pale, and that I wasn’t anemic, and I was already taking so much iron I was almost completely unable to have bowel movements, even when I chased the iron pills with a double dose of stool softener.
Fran listened to me and wrote patient is naturally pale on the line next to Color and filed a copy of the form behind the ones the other nurse had left, and every time after that, she just put a check mark in the Color box to denote that my color was fine.
Fran was my favorite.
The Chair
On June 9, 1995, my mother helped me onto my father’s antique wooden desk chair and pushed me to the bathroom.
I was a dead weight in the heavy chair. My mother, bigger and taller than I am, pushed as hard as she could. The chair’s casters caught in our beige wall-to-wall carpet. Push, back up a few inches, rest. Push, back up, rest. When it was time to get up and onto the toilet, my mother held my upper arms very tightly, then lowered me down.
By afternoon my legs were completely paralyzed. My breathing had started to go. My mother phoned my neurologist and told him I was doing worse.
It was a bump in the road, he said. He believed my immune system would burn itself out, that it would stop producing antibodies and that I’d start to heal. It might happen today, even.
Then my mother phoned my hematologist.
The hematologist said we should hang up and call 911.
I heard sirens. An ambulance arrived, and a fire truck, and two police cruisers.
My mother answered the door and led the trauma guys upstairs, where I lay on the bed, still but able to chat. I can’t move my legs, I told them.
The trauma guys, those Norse gods, strapped me into a firerescue chair, carried me down the thirteen steps to the first floor, lay me on a gurney, and rolled me into the back of the ambulance.
It was so green outside! Massachusetts was a green jungle. I could smell the trees.
Since it was rush hour, the driver turned on the siren.
Oldies
I wrote this three months after the diagnosis:
I listen to Oldies 103 now because if I listen to other people’s music then my life won’t really be mine. All day I hear songs about girls dying in car crashes and their boyfriends having to be good so they can see them again in heaven.
If I get better, I know my life will be the same as it was before, and I already know it isn’t worth suffering so much for. Not this much. And so I am trying to change.
I started listening to Oldies 103 because it reminded me that something had happened to me while I was sick, and that I was different. And that even if I forgot to stay that way, I’d keep the habit of listening to the new radio station, and it might remind me.
I wrote this four months after the diagnosis:
I want to get better so I can be with the other people, the other dying people, who know the things they know.
Other People
Most apheresis catheters like mine are implanted in women with breast cancer.
A visiting nurse asked me how long I’d had cancer. Then, after I told her I didn’t have cancer, she swore, and apologized for swearing, and told me all the nurses in the office had gathered for a moment that morning in the break room and comforted one another that someone so young, so much younger than they were, was so sick.
Either before or after that—though it doesn’t matter now, since I remember things in the order that they make sense—my primary care doctor visited me and said I’d already endured something much worse than most people have to endure in an entire regular-length life. His voice shook. He was forcing tears either forward or back.
Before the diagnosis, I would have loved hearing him say that.
The doctor was older than my parents, and he must have had plenty of younger patients, but he didn’t understand yet that suffering, however much and whatever type, shrinks or swells to fit the size and shape of a life.
I refused to let him in my hospital room again, and my parents and I re-enrolled in our health plan with a different doctor. I felt no antipathy, just a certainty that his pity would accrue to me, and would grow in me like the sea of antibodies with which I was already invisibly killing myself, and that I couldn’t take in any additional poison.
The Old Neurologist
During the first hospitalization, I’d been wheeled straight from Emergency to Radiology for a chest X-ray to ensure I hadn’t aspirated anything, given my weak breathing muscles.
While she positioned the machine above my chest, the technician had asked me what was wrong with me. I must have looked healthy, lying there on the table. Nothing had atrophied yet.
I couldn’t remember what they’d told me a minute or two earlier. I said, It’s something with BAR in it. Epstein-Barr? I’d heard of that.
The technician paused. Are you tired? she asked. I wasn’t tired. I told her I’d been having trouble walking and breathing.
Oh, Guillain-Barré! she said right away.
That wasn’t what I had, either, but it was my official diagnosis at that point.
And it was what my neurologist called my disease when he saw me two weeks after I was released from my first hospitalization.
I went to see him because I’d developed the same symptoms as I’d had before my seven plasma replacement sessions, and the symptoms seemed to be worsening. My walking looked feebler.
It was hard not to monitor my strength obsessively. I’d check the rigidity of my fingers, spreading them out wide and straight, squeezing them with the fingers of my other hand. Then I’d do it again, two minutes later. And again.
And I’d get up and walk, and try to evaluate my gait. See if I could stand on my toes, on my heels. See if I could balance on one leg. Ask my parents to check everything and judge whether I’d grown feebler in the past four hours. Sometimes it was easy to judge, sometimes not.
My neurologist felt the strength of my large muscle groups, and measured my grip strength in both hands, and said the following sentence: It’s just a bump in the road.
He knew that myelin grows back in patches, and that sometimes, while growing back, the patchy myelin can cause symptoms that mimic the pathology of myelin being stripped from the neurons.
And so he interpreted my symptoms as a bump in the metaphorical road toward wellness.
Three days later, when I was about to stop breathing, my parents took me back to the ER, where my lungs’ vital capacity was measured, and within the hour I was back in Intensive Care having my plasma replaced.
After this sequence of events took place twice more, and I was sitting in my neurologist’s office with symptoms I knew were worse than they’d been the day before, and which I knew beyond reasonable doubt were the beginning of another relapse, and after he said bump in the road again, looking cheerful and bored, I knew I was in trouble.
My neurologist never gave up trying to convince me that my relapses were bumps in the road. I was secreting antibodies as fast as the hospital could clean them out of my blood, and if I went eleven days without having my blood cleaned, my peripheral neurons would start sustaining major damage.
The Two Kinds of Decay Page 5
