The fear of death came once, and that was it. It was like getting an immunity to the chicken pox. It never goes away. I am learning not to remember it.
The first time I was brave. I kept grief at bay for a long time. The moment I gave up, then everything—horror, grief, all of it—came in a great rush.
Every other time, I fell into it as if into a soft mat. I yielded instantly, thinking It is here again, this certainty I will soon die, this thing I already know that I have not forgotten for a single minute.
Cavities
One day, while I was mostly paralyzed and my muscles were atrophying repulsively, two nurses scooped me up into a hammock attached to a scale and told me how much I weighed.
I’m half an inch shy of six feet, and in the hammock I weighed a hundred and ten pounds, and that wasn’t even my skinniest.
People brought me rich foods to eat, but there was no point. Extra food would turn to fat in me, as I couldn’t move to stimulate any muscle growth.
And the fatter I got, the harder it got for my muscles to move my body.
Not all of the nurses understood this. Particularly not the tubbier ones.
Still, I wasn’t avoiding rich foods. I ate french fries all day. I ate as much as I wanted, which still wasn’t much.
I did care about my teeth, though. Having my teeth drilled seemed an avoidable inconvenience.
And so at night, after my teeth had been brushed, when I was offered a cup of soda for my bedside table, I always asked for diet instead of regular.
And sometimes I got the look. The look that says Oh you goddamned malingering brat, starving yourself to get attention while in the next room there are people dying.
For a while I explained that it was to keep from getting cavities, as I was unable to manipulate a toothbrush to clean my own teeth after drinking a syrupy sugar drink, but then I gave up because of course an anorectic would say that.
Corticosteroids, which I took for a long time, eat away at the skeleton, and it’s not uncommon for the teeth to rot a little. And that’s not even taking into consideration that my teeth weren’t being brushed very regularly or very well.
But it’s been twelve years since my diagnosis, and I still don’t have a single cavity.
Hair
I did lose some hair, but no clumps. Or none that I noticed. Then again, I was too weak to lift my arms to touch my head, and my fingers were more or less paralyzed, and all the little muscles in my hands had atrophied. The pillows of flesh that had been on my palms, at the base of each thumb, had withered.
And so the nurses washed my hair for me. But washing a patient’s hair is a lower priority than reconnecting a line that has been pulled out of a vein by accident or on purpose, or defibrillating a heart that has arrested, so I didn’t ask for a shampoo very often.
When my college boyfriend came to visit me for the first time, he declared my condition greasy but stable.
After eight or ten days, a nurse would wash my hair for me, whether I’d asked her to or not. If I were paralyzed, this involved transferring me from my bed to a wheelchair, wrapping my central line in waterproof plastic, wheeling me into the shower, sticking my head into the stream of water, doing three or four shampooings, soaking the entire room, and pulling out what looked like pounds of my dead hair.
Sometimes a nurse wouldn’t want to deal with cleaning up such a mess, and she would wheel me down the hall to a rinsing sink, above which hung a sign that said something to the effect that it was not for patients’ use. But the rinsing sink was the perfect height for washing a slumped, paralyzed girl’s hair.
One nurse would wash my hair while another stood watch. Sometimes we got in trouble, but it was worth it. All the nurses had to do after washing my hair in the rinsing sink was to wipe it with a couple of towels, fold them so no one could see they were filled with hair, and throw them down the laundry chute.
God knows, the anorectics threw worse things down there.
Tests
First you’ll feel a tiny sting where the needle goes into the lumbar spine, then a small burn when the anesthetic is pushed into the tissue, then a bit of pressure when the second needle goes in, and then nothing. You’ll just lie there on your side, fetal, and if an intern or a student gets to do the puncture, you’ll hear everyone congratulate the intern or the student once the fluid is in the test tube. And if you ask to see your spinal fluid, someone will hold up a test tube of perfectly clear fluid.
And then everyone’s happy and you’ll just lie flat awhile until there’s no risk you’ll get the notorious spinal-tap headache if you move.
You can rest knowing it will be days before you’ll hear whether the fluid contains a high protein content yet a normal cell count, the combination of which indicates severe nerve damage.
These days, hospitals have open MRI machines, but my hospital had only the closed kind. If you needed an MRI taken of the top of your neck, you were slid all the way inside the machine.
Once you’re inside, it’s hard not to notice that the wall of the hollow tube is no more than six inches away from your body at any point.
My muscles were atrophied when I had my MRIs, and I was very thin. If the walls had been only six inches away from my body, a larger person wouldn’t have been able to fit into the machine. So this memory must not be right.
But the point is that once you’re inside, if you have any imagination at all, you feel as if you have been buried alive in a white plastic coffin.
This is why MRI technicians offer a slight sedative before the procedure, and why they say to keep your eyes shut and imagine that the thudding sounds of the machine are waves crashing on a beach, and why they speak to you throughout the test, asking how you’re feeling and declaring that you’re doing well, and why they place a panic button in your right hand. If you press it at any point, they slide you right out of the tube.
If you think you might open your eyes inside the tube, ask for a washcloth to be laid over your eyes. It will work as a blindfold, even if you open your eyes underneath it, and since you’re in a coffin, you can’t move your arms or any other part of your body to touch the blindfold, and you will not be afraid.
More Tests
For a nerve conduction velocity test, electrodes are stuck to the skin above the tips of the neuron in question. Then electric shocks are delivered directly to the nerve cells. You lie there and get shocked. You know the shocks are coming. It’s simple.
The shocks start small and get bigger. There is a break of one second between one shock and the next.
For the first few series of shocks, you think it wasn’t so bad. Even the strongest shock isn’t enough to make your whole body seize. If it’s a leg nerve that gets shocked, the biggest shocks will only make your leg thrash.
That’s the whole first part. It lasts an hour or less to test three or four nerves. And while the discomfort is unrelenting, the pain is not excruciating.
An electromyogram is more or less the same—electrodes delivering shocks—but with sensor needles in the muscles that those nerves innervate. So it’s the same shocks, but you must keep the muscle tense while the shocks are delivered to the nerve cells and while a needle is jutting out of the muscle.
The technicians always ask whether it’s your first EMG. If it is, they say it’s all right to cry. And maybe they’ll add that men cry more than women, or that a great big juiced-up guy from South Boston is more likely to cry than a librarian from North Cambridge. Or that people who try hard not to cry are more likely to cry than people who are open to the possibility that they might cry. The EMG technicians watch people get tortured all day, but it is hard even for them to guess how anyone will hold up until the actual breaking point.
I got through my first three EMGs without crying. Each one got easier.
But then one day, when there were no lab technicians available, a doctor administered my EMG. He could deliver the test as well as interpret the results, right there, while the data from the first s
hocks showed on the computer screen.
And I asked him what the data looked like, and he said the data looked bad. My nerves’ conduction velocities were slower than they’d been the last time, and their conduction block had increased. The antibodies had destroyed more myelin.
And right away I knew I would need to get a new central line implanted and have my plasma replaced again, and I also knew that each time the myelin was stripped from my nerves, it was likelier to grow back imperfectly, and that I was likelier to lose strength and sensation permanently.
It wasn’t the EMG but the bad news that made me cry. It’s probably best to have an EMG while someone’s opening your mail and finding that you got into college, or while you’re watching the right lottery numbers appear on the television screen.
If you start crying during an EMG, you can pretty much forget about trying to stop crying until the test is over.
I’d guess that if you get a dozen EMGs in your life, it’s likely you’ll cry during at least one of them.
I don’t know any other hospital procedure that makes people cry as reliably as an EMG except the test of the blood’s clotting agents, when you just sit and bleed from a puncture wound, and the blood drips until your fibrinogens and platelets create a barrier to the bleeding, or it’s decided you’ve lost enough blood that it’s certain your fibrinogens and platelets aren’t going to be able to stop the blood, and then the test is over.
Tabitha
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.
Walking
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.
Rehabilitation
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!
The Two Kinds of Decay Page 4
