The Two Kinds of Decay Read online

  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.

  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.

  He told me that he and one of his terminal patients played a game every day he visited the patient at the hospice. The hem-onc brought music recordings with him, and he’d try to stump the terminal patient, who knew a lot about classical music. Like, with the slow movement of one of the less famous of Mozart’s piano sonatas. And the terminal patient, who had a lot of records with him, would usually guess correctly what the piece was, and then he would try to stump the hem-onc.

  The hem-onc visited his terminal patient first thing in the morning, then visited me, and then saw the rest of his patients.

  He had a daughter about my age, and their relationship was not good, and it troubled him. She was a lesbian, and he didn’t know how to talk to a teenaged lesbian daughter.

  Talking to me was easy for him. He knew how to talk to people with blood diseases.

  One day he told me his terminal patient, the one with all the classical records, had died.

  How many other terminal patients did he have? How many deaths had my hem-onc witnessed? Did he feel like a failure when his patients died? And by that metric, what case isn’t a failure, in the end?

  What metric is used instead of immortality to judge the success of a hem-onc?

  The Sikh

  My first central line was implanted in the middle of the night. I needed apheresis right away, and my arm veins were finally blown. That’s a clinical term. They had scarred and narrowed. I still have my tracks. I should have been given a central line earlier, but every apheresis session was declared the last one I’d ever need, so it was a while before anyone noticed it was time to get serious.

  Central lines flow through a catheter into a large vein, usually the vena cava. Central lines can deliver more toxic fluids that would irritate smaller veins, and they have room to contain multiple lumens, and they can deliver fluids faster, as the heart distributes them immediately.

  My hematologist asked me if I wanted my parents there while it was implanted, and though I’d never have thought of bothering them in the middle of the night, I thought he was telling me that getting a central line was something that one’s parents were supposed to be there for, so I said sure. And so my parents came to watch me get my first central line implanted.

  My hematologist might have thought I’d wanted my parents there to help me feel less fearful, but I didn’t know enough about the procedure to feel fearful. Yet I was old enough to have known that watching their child have vascular surgery isn’t something parents should do.