On top of that, the side effects from the drug were the third worst of all the drugs I’d been given.
Interferon’s main side effect is described as flulike symptoms.
I remember my father standing in the doorway of my room as I shook with fever in my bed. He looked a way I’d never seen him look before.
I wrote this in my journal on October 3, 1995:
My father cannot look at me, and when he finally speaks to me, he does so as though he is speaking to someone on the verge of death — that is, on the verge of death, and we’re in a really bad play.
Each time I gave myself my shot, I wanted to do it in front of someone. Did I want parental approval, encouragement that even though the injections were easy, I was doing something hard?
I walked into my parents’ bedroom on those shot nights, carrying my works, and if my father was there, he’d get the look and leave. My mother stayed to watch the shot.
Twelve hours after my first injection, I was able to get out of bed. The worst of the fever was over.
But for six weeks had what seemed to be a bad cold and cough, and a slight fever, and the medicine didn’t do anything to help me stop secreting the antibodies, so I had to have apheresis all through the interferon treatment anyway.
And my data were removed from the study since so much of the drug had been thrown away with my plasma. On paper I hadn’t been on the drug at all.
Certainty
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I was still withdrawn from school and living with my parents, but my baseline strength was high enough that I could take a job at the bookstore where I’d worked in high school.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.
Attention
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.