Sarah Manguso - The Two Kinds of Decay

Our hem-onc just told me she had swum in the ocean with her catheter, and that she had got it infected. And he smiled the way we do when we talk about naughty affairs or petty crimes that people get away with.

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.

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.

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.

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.

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.