The Two Kinds of Decay (2 page)

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Authors: Sarah Manguso

BOOK: The Two Kinds of Decay
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I was brought upstairs from Emergency to Intensive Care and given a treatment called
apheresis.
 
From the Greek
aphairein,
to take away.
 
In the hematological context, apheresis is the process of separating blood into its components (red cells, white cells, platelets, plasma), removing the component that's sick, and reinfusing the rest of it, along with a suitable replacement for the sick part. The sick part of my blood was the plasma.
 
My nurse told me about a man she treated whose body manufactured too many platelets, enough to clot his blood right in his blood vessels. And so when his blood was separated, the extra platelets were removed and thrown away, and replaced with saline to make up the lost blood volume.
 
I thought his platelet-producing powers might have been made useful—if his extra platelets could flow out of him, through an apheresis centrifuge, and right into a hemophiliac.
 
But of course the man's genes might have been diseased, or he might have been infected by a secret virus, and his platelets might have given someone his disease, or worse. So they were just collected in a bag and thrown away.
 
My plasma was filled with an antibody that destroyed peripheral nerve cells, so it was thrown away, too.
 
My plasma was replaced more than fifty times, and the effects of the treatment lasted as long as the fresh plasma stayed clean of the antibodies, which for several months was only about two days.
 
The machine took four hours to clean my blood. I bled eight ounces into the centrifuge, then the machine spun the blood fast enough to separate it into four layers. My plasma flowed into a bag, then my cells were mixed with saline, synthetic albumin (a blood plasma protein), and fresh frozen plasma, which contained the other plasma proteins. That new mixture was reinfused. And then the machine withdrew another cup and did the same thing, and then another cup, and so on, until the new plasma occupied enough blood volume that it was no longer useful to withdraw and clean another cup.
 
The first twenty times or so, before I had a central line—a tube in my chest that provided easy access to my blood—my arm veins were used for blood collection and reinfusion.
 
I received direct injection, via tubing connected to a
cannula,
or hollow needle—no flexible catheters were inserted. I had to lie still so the needles didn't tear my veins. Fourteen-gauge
needles were used, large enough to keep my healthy cells intact so they could be reinfused. There was one in each crook of my elbow—one to take blood out and one to put it back in.
 
It is not easy to lie still with a fourteen-gauge needle in each arm, for four hours, shaking with cold that doesn't go away no matter how many heated blankets are tucked over you. The cold comes from the inside.
 
By comparison, routine blood draws, which I had several times a day, are taken via twenty-gauge cannulae, and infant lines are usually twenty-four-gauge. Twelve-gauge and fourteen-gauge cannulae are the widest used and deliver fluid faster even than lines that go to the heart, and are also known as
wide bores
or
trauma lines.
 
Over time, the blood draws felt good. My veins were always in the process of healing from multiple punctures, and the tiny twenty-gauge prick scratched the itch that comes when flesh heals.
 
I bled out two liters of plasma during each treatment, but I was always given back more than two liters of fluid to prevent dehydration. Two liters of albumin, about a quarter liter of fresh frozen plasma, and some saline. I let my bladder fill as full as I could, but sometimes I had to raise my hips so someone could slide a pan under them for me to piss into.
 
The nurses always congratulated me on my impressive bladder volume. I once pissed 900 cc. That was my record.
 
The waste bag hung on the side of the machine and filled slowly with my yellow plasma. Periodically I'd ask the nurse to hold up the bag so I could see how full it was. It felt warm, like a bag of soup. By the end of each treatment, the small empty part left at the top of the bag would be clouded with condensation from the almost hundred-degree fluid.
 
One day during the treatment I was hungry and ordered a plate of french fries from the cafeteria. They were delivered, and I ate them during the treatment. This was later on, after my arm veins had scarred and after I had a central line in my chest, which left my arms free to move.
 
After that treatment, the plasma in the waste bag was pale and cloudy. The nurse and I realized I'd digested the french fries as my blood was being cleaned, and that the lipids from the french fry grease had been digested, released into my plasma through my small intestine, and then bled out into the apheresis machine.
 
After we figured that out, I ate french fries every time my plasma was replaced. My nurse and I imagined that in the future, people would have their plasma replaced whenever they ate rich meals.
 
Apheresis did a good job of cleaning out the mess in my blood, but since it only removes the antibodies once they're secreted into the blood, and doesn't prevent the body from making more, apheresis wasn't a permanent solution to the problem of my disease.
My blood plasma had filled with poison made by my immune system. My immune system was trying to destroy my nervous system. It was a misperception that caused me a lot of trouble.
 
All autoimmune diseases invoke the metaphor of suicide. The body destroys itself from the inside.
 
I secreted poison into my blood. The poison was removed and replaced with other people's blood and with chemicals.
 
With my own blood in me, I couldn't feel, and I couldn't move, but with other people's blood in me, and with chemicals in me, I could do those things.
 
The new blood became mine as soon as it entered me. Or maybe it took a moment to mix with what was there. Or maybe it took an hour, or a day.
 
My blood came out dirty and went in clean. It came out hot and went in cold. It came out old and went in new.
 
And the new, cold, clean blood was better than the blood I made myself.
Five years earlier, when people visited the bookstore where I worked and asked for books for their graduating nieces, or for a trip to the beach, or for a plane ride, right away I would tell them to buy
Catch-22
.
 
I wore a tan apron with a green name tag on the right side. I asked slowly and clearly,
May I help you find something?
 
I made eye contact with the customers, then walked them to the books they needed. Walking the customer was the important part. Just saying
That section's in the back, in front of Travel
, or pointing to Pets, which was behind Science, didn't result in sales as often as walking the customer to the very shelf, pulling the book from the shelf, and placing it in the customer's hand.
 
One day my supervisor asked me to stop recommending
Catch-22
to the customers and instead to recommend any of the new clothbound books stacked pyramid-style on the front table. Someone had bought
Catch-22
from me at the front register, then come in later that day and returned it at the back
register. My supervisor said it was the third or fourth return of the same paperback copy, and it was getting shopworn.
 
 
One night in 1994, because I had to be somewhere else, my college boyfriend brought my copy of
Catch-22
to Joseph Heller's book signing and had Heller inscribe it to me.
 
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.
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.
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.
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.

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