I thanked her so profusely the first time that she was moved to explain. I could wipe shit all day, she said, smiling.
Even blood didn’t bother her. Blood is for life, she’d said another time, when a line had popped out of my arm and I’d shot a blood geyser all over my bed.
I watched her clean up messes that horrified me, and she was cheerful, always.
One day she told me about the phlegm that formed in cancerous lungs. Sometimes she had to suction that phlegm. And sometimes it was black with necrotic tissue.
The young nurse said she’d never got used to the odor of that phlegm.
Sometimes I could hear people being suctioned. And sometimes above the slurping sound I heard the people yell in pain or in fear at seeing their own dead selves being sucked out of them.
The Wrong Symptom
The nerve damage associated with my disease is supposed to begin at the toes and move upward, as if you’re sinking in invisible, numbing quicksand.
Or sometimes it begins at the hands and moves up the arms to the torso — as if you’re standing in the quicksand on your hands.
During one of my hospitalizations, after being pricked with the pinwheel — a metal tool resembling a pizza cutter — I reported a spot of numbness on my abdomen. It was, coincidentally, about the size of a slice of pizza. The numb spot was surrounded by flesh that could feel. And that symptom wasn’t clinically normal for someone with my disease.
There was no diagnostic explanation for that numb spot, and so the following explanation was given: while there may in fact be a symptomatic area on my abdomen, the symptom I was reporting was not the correct one.
In my disease, the numbness starts distally, in the toes and fingers, and progresses proximally, toward the trunk. In my disease, there are no numb spots on the trunk. Those neurons aren’t stripped of their myelin until the arms and legs go numb first.
After considerable discussion among the doctors and their entourage of students, it was declared that I had indigestion, which was common in patients who had been lying on their backs for days or weeks as I had, and it was declared that since I was used to reporting all symptoms as numbness, I was feeling heartburn and reporting it as numbness.
If I broke a toe or lacerated my palm, it was apparently assumed I’d report the pain as numbness because I’d become accustomed to calling my discomfort numbness.
A doctor listened to my belly through his stethoscope and declared gastric unrest, though there is always some unrest in the bellies of the living.
I was prescribed a few tablespoons of liquid antacid. I drank it and the symptom abated a little, maybe.
And so the sensory changes had been caused, of course, by the antacid, just as the symptom had been caused by indigestion, and just as the indigestion had been caused by my having lain on my back for so long.
But not really.
Bananas
The next time you have some sensory nerve damage, touch the paresthetic skin and evaluate its numbness.
Wait a minute. Then touch the skin again.
Wait another minute, then touch it again. Again. Wait an hour. Two hours, ten hours, a day, two days.
Is the numbness changing? Getting bigger, smaller, stronger, weaker? What have you done in the last four days? Sometimes potassium deficiency causes paresthesia. Have you eaten many bananas in the last four days? Go to the store and buy six bananas and eat them in the space of a morning. And feel that, yes, the numbness is disappearing! Since digesting most of the six bananas, your hands now feel a softer version of the soft quilt you have been lying under!
The world, with its infinite variables, is the wrong place to attempt implementing the scientific method. Most successful experiments work only in vacuums. Boyle’s law, Newtonian mechanics — only in vacuums are they true.
Narratives in which one thing follows from the previous thing are usually imaginary.
Everything that happens, happens in a moment that follows from all the other moments in spacetime.
As I see it, that’s the main problem with neurological symptoms that can’t be measured in numbers yet, and why many of my symptoms weren’t treated.
Those symptoms weren’t treated because they were unlikely enough to be virtually impossible. My reports of them were their only observable evidence.
My symptoms were so unlikely, by the book, that despite my reports of them, they were assumed not to exist.
Strength
After my first hospitalization I was sent home with a prescription for three physical therapy sessions per week at the local rehabilitation center. I was all better.
My physical therapist asked me what I wanted to be able to do, and I tried to think of the hardest thing I’d been able to do before I’d got sick. I said run three miles.
The therapist knew how to strengthen each muscle that had been weakened by the rogue antibodies in my blood, and she took a few minutes to record the strength of each muscle and to write a detailed plan, and then she explained the plan to me.
All I remember of her plan is that she pronounced the word strength as shtrenth. Over and over.
I got on the treadmill, but I had foot drop — my feet slapped down because I was too weak to dorsiflex, to turn my ankle and toes upward — and so I stomped with flat feet. Marched. And tripped a lot. I was going one mile per hour. The first day, I walked for five minutes. Eighty-three thousandths of a mile.
I stayed on the young therapist’s rehabilitation plan for one week, getting weaker instead of stronger, and then, eleven days after being discharged, I wound up back in the hospital.
I did eventually run three miles, but it took nine years.
The First Time
Unused to being frail, I returned to college and stayed up very late that first night reading mail and writing papers and cleaning out the refrigerator, and in the morning I lay in bed vomiting into the wastepaper basket from fatigue, and less than two weeks later I was back in the hospital.
The Hematologist
My disease has two steps: the immune system secretes antibodies into the blood. Then the blood delivers the antibodies to the peripheral neurons.
The antibodies destroy the neurons. First they eat away the cells’ myelin sheaths, then they eat away the cells themselves, which heal more slowly, if at all.
And so I had a nerve doctor and a blood doctor.
The stereotype for hematology/oncology specialists, or hemoncs (pronounced almost like he-monks)? They are the self-styled St. Judes, patrons of useless causes.
My hem-onc was special. He was from Norway. And he didn’t mind sitting in my wheelchair if it were nearer my bed than the armchair.