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 the 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.