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.
I already hated my neurologist by then. Every time I’d seen him after a hospitalization, he told me to pack my things and go back to college because the disease was gone.
Despite witnessing my first four relapses, my neurologist seemed to believe that plasma replacement would make my disease go away.
I could stagger to the bathroom twice a day with a walker and with one of my parents holding me partway upright. That, apparently, was good enough.
I think it was because he was tired of being told by a twenty-one-year-old girl that he was wrong that my neurologist recommended me to a doctor at another hospital.
The New Neurologist
After examining me and listening to me for less than five minutes, my new neurologist said I didn’t have Guillain-Barré syndrome but a rarer, chronic form of the disease, called chronic idiopathic demyelinating polyradiculoneuropathy. He was right.
He recited a list of the treatments I’d have instead of apheresis, in chronological order of necessity. If steroids don’t work, he said, we’ll try gamma, and then we’ll try interferon, and since azathioprine didn’t work, we’ll try cyclosporine, and if that doesn’t work, we’ll try cyclophosphamide, and if that doesn’t work, there are lots more drugs we can blast your immune system with.
He said some of the drugs had bad side effects, but that a twenty-one-year-old person could handle a few side effects, and that a twenty-one-year-old person should not waste time with any treatments but the most aggressive.
He didn’t approve of plasma exchange, which just tidied up the immune system’s spill of poison into the blood without stopping up the leak that caused the spill.
He was like a Black Panther of pharmacology. By any means necessary. I loved him immediately.
I never saw my old neurologist again, and in a few years I heard that his partner, who’d covered my case for him sometimes, had lost his license after being convicted of having had sexual relations with a number of his elderly patients. Their practice was shut down, and I don’t know whether my old neurologist moved to another hospital or quit practicing entirely.
Steroids
It’s hard not to speak in clichés about corticosteroids.
They are powerful and make you feel better than it is possible to feel without them, and the more of them you take, the better you feel.
They are poison if you take them at a high dose for too long, and too long is generally considered more than six weeks. I took them for four and a half years.
In August 1995, when I couldn’t stand up, I sat in a wheelchair in my new neurologist’s office as he wrote me my first prescription for steroids, and I took 60 mg of prednisone the next morning, and 60 mg the morning after that, and that was the morning I got up and walked all the way from one end of my parents’ house to the other and never needed a walker again.
I was finally able to eat a whole meal and no longer needed to drink two protein drinks per day. Not only that, but my parents and I were able to go out to restaurants, and I could walk to the table using just a cane.
And every meal, no matter how simple or cheap, tasted better than any other meal I’d ever eaten, and every piece of music I heard was more beautiful than any other piece of music I’d ever heard. This sounds like trite shorthand, but it is not.
I remember feeling well after having begun to take steroids, and how happy my mother was to cook a hamburger for me. I remember eating it. The ketchup, the mustard — I can taste the condiments.
I’m not talking about the way ketchup and mustard taste in general. I mean I can taste the particular condiments that were on that particular hamburger I ate in 1995.
I started staying up until four in the morning with a pile of books and magazines, and sleeping until seven, when I’d climb downstairs and make myself breakfast.
Sometimes I woke up screaming. Or, to be more precise, I’d waken from a dream of being in a death camp or a bad fire, so frightened that when I opened my eyes, I thought screaming might distract me from my fright. So I was always wide awake before I screamed.
And since my diaphragm muscles were quite strong by then, I could scream loud enough to wake my parents.
My father sometimes came to see if I were all right, if I had torn out my catheter as I’d slept, but only one of the stitches ever got torn out.
The catheter never got torn out in my sleep because I’d learned how to roll over slowly, even in deep sleep, while cradling the catheter in my left hand.
And I rolled over like that for a long time after the tube was pulled.
The Sixth Sense
The sixth sense is not psychic vision but proprioception, the perception of where the body is in space.
In October, during the first year of the disease, having already lost sensation, movement, and all my reflexes, I lost my sense of proprioception. Every night before sleep, my mattress folded into undulating spiral shapes and I stuck to the walls and somehow my head got to be five feet higher or lower than the rest of my twisted body. As long as it was dark, I stayed lost in imaginary space.