The Two Kinds of Decay

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.

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.