My copy of the book was a cheap paperback, with a bent aqua-colored cover, but I hope that as he held the book in his hands, Heller hadn’t wished I’d sprung for a clothbound copy of his new novel, whatever it was, and that he was happy I’d read his famous book so many times and that I’d loved it enough to send someone out to have it signed for me.
Six months later I received the diagnosis that would become the focus of my life, and Heller died four years after that — after a long, slow recovery from the same disease.
Names
The first doctor known to have observed cases of my disease was Jean Landry, in 1859. He saw that his patients initially began to feel numbness and paresthesia (abnormal sensations) in their feet.
In addition to the strange sensations and numbness, the patients’ feet grew weak and then paralyzed. And the numbness and paralysis spread upward from the feet, up the legs, and then continued up the torso to the diaphragm. When the diaphragm muscles weakened to the point that the patient could no longer breathe, the patient died.
And so the first proper name of my disease was Landry’s ascending paralysis.
In 1916, two more French doctors, Georges Guillain and Jean Alexandre Barré, studied several people with ascending paralysis and observed the key diagnostic abnormality of increased spinal fluid protein but normal cell count.
And so the second proper name of my disease was Guillain-Barré syndrome.
The pathology is now understood as the immune system’s generation of antibodies targeting the peripheral nerves’ myelin, their protective and conductive protein sheath.
Landry’s paralysis came from nerves that had lost their myelin. And the protein in Guillain and Barré’s spinal fluid was made of that stripped-off myelin.
The condition may resolve spontaneously, relapse and remiss indefinitely, or progress and terminate in death.
In 1998, after my first year of graduate school, I put on my MedicAlert bracelet. It’s engraved:
TAKES PREDNISONE FOR CHRONIC IDIOPATHIC DEMYELINATING POLYRADICULONEUROPATHY
Chronic idiopathic demyelinating polyradiculoneuropathy. CIDP. That’s the shortest name for what’s wrong with me. It’s something like a chronic form of Guillain-Barré syndrome but not exactly, and there isn’t a proper name for it yet.
Statistics
Approximately 80 percent of Guillain-Barré syndrome patients have a complete recovery, and about 10 percent recover with severe disability, though the death rate among patients is still about 2 to 3 percent even in the best intensive care units.
It’s hard to project these data onto my disease, CIDP. My disease is similar to but not the same as having Guillain-Barré syndrome over and over again, with no time to recover between bouts.
Some believe the clinical difference between Guillain-Barré syndrome and CIDP is subjective — that my disease was CIDP because I was sick for years instead of just a few weeks. Sometimes I think I might just have had a particularly bad case of Guillain-Barré syndrome.
Of course I’d rather have the common disease that people know how to treat, but there were times that I cherished my rare disease for its irrefutable proof of my specialness.
For its proof that my death, the end of the disease, whenever and in whatever form it came, was going to be remarkable.
Causation
Was the CIDP a physical manifestation of a spiritual illness?
Did the medication trigger the depression, or did the depression trigger the CIDP?
What about those yogis who can lie down on a bed of nails, then arise, streaming blood, then stop the flow of blood from each wound individually with the power of their minds? Isn’t frailty often a choice?
And if frailty is a choice, then isn’t an autoimmune disease a semi-intentional suicide?
What came first, the suicidal depression or the suicidal autoimmune disease?
Did they happen independently of each other, or not?
Sometimes I think that in the real universe, I am born already in possession of my CIDP, my depression, my whole life and death, and the text of this book. That I’m incapable of making the events of my life happen — either because they’ve already happened, or because they’re always happening, at every possible point in spacetime.
And then sometimes I think I’ve made everything happen, starting with making myself be born.
The Internship
When I was sixteen, I was a volunteer intern at the local hospital.
I was given a white coat and a clipboard and accompanied the medical students on their clinical rounds.
I scrubbed in and watched vascular and orthopedic surgeries not knowing that in the future I’d have both kinds.
For several weeks in the pathology labs, I made slides from tissue samples suspended in wax.
One day a doctor and I visited a patient who was deeply asleep. She was an old woman, and her name was Anna.
I held Anna in my arms as the doctor listened for her breaths through a stethoscope held to her back. She wasn’t cold or waxy or lying in a pile of excrescence, so we spent a long time trying to find a pulse. She looked no older or frailer or sleepier than many of the other elderly patients.
When we were sure Anna had died, the respiratory specialist recorded the time as her time of death. Then the respiratory specialist and I went back to his office, and he told me it was all right to feel disturbed or upset by what had happened.
I didn’t feel upset, but I thought I should, so I stared at the wall and tried to look solemn.
The respiratory specialist said I could sit in his office for the rest of the afternoon with a couple of interns who were doing his paperwork. And so all afternoon I sat and stared at the wall and looked solemn, and periodically one of the interns would ask me if I felt all right, and I would say, solemnly, Yes.
One night, five years later, in the same hospital, a woman came into my room to take blood. But it wasn’t one of the phlebotomists. It was Louise, from the pathology lab, where I’d made slides from all those tissue samples all those years before!
I told her I’d been an intern in 1990, and that I’d liked working with her. She said she remembered me.
Blood and Shit
My shoulders still allowed my arms to rotate behind me, but my hands were too weak to resist even the slightest pressure. I couldn’t wipe my ass.
It’s hard to wipe someone else’s ass. After asking for a few extra swipes, I’d feel embarrassed, and then I’d say to hell with it even though my ass would itch like hell later and I wouldn’t have the strength to scratch it.
One of my nurses was a year younger than I was. She was the kind of person who would visit her brother and his family and see the house wasn’t clean and then clean the entire house. And she really knew how to wipe an ass. With a washcloth soaked in hot water, and then with a dry towel.