The Two Kinds of Decay

  Table of Contents

  Title Page

  Acknowledgments

  The Beginning

  Allegri

  Signs

  Bad Blood

  Metaphors

  A Role Model

  Names

  Statistics

  Causation

  The Internship

  Blood and Shit

  The Wrong Symptom

  Bananas

  Strength

  The First Time

  The Hematologist

  The Sikh

  The Taste

  The Cheerleader

  The Forgetful Nurse

  The New Machine

  Paralyzed

  Death

  Cavities

  Hair

  Tests

  More Tests

  Tabitha

  Walking

  Rehabilitation

  The Vascular Surgeon

  Vitamin K

  Juan

  Fear and Fright

  Color

  The Chair

  Oldies

  Other People

  The Old Neurologist

  The New Neurologist

  Steroids

  The Sixth Sense

  Hobbies

  A Gift

  The New Medicine

  Certainty

  Attention

  Intimacy

  Supplies

  Tableau Vivant

  The Admiral’s Nephew

  The Signet

  More Medicine

  Cured

  The Dump

  1996

  Calendars

  Secrets

  Iowa City

  Before and After

  The Price

  Mary

  Soldiers

  Lockdown

  Last Words

  Prayer

  Kimiko

  Darlene and Sam

  More Cause and Effect

  Uncertainty

  Bones

  Scars

  The Point and the Ray

  Music

  When

  Corroboration

  Just Visiting

  Memory

  Relevance

  Measuring

  The End

  ALSO BY SARAH MANGUSO

  About the Author

  Copyright Page

  Acknowledgments

  With sincere thanks to the MacDowell Colony and the Corporation of Yaddo for their gifts of time and space; to Catherine Corman, Lisa Selin Davis, Jennifer L. Knox, Julie Orringer, and Emily Senecal for their invaluable notes; to PJ Mark and Denise Oswald for their good faith.

  With deepest gratitude to my doctors, nurses, parents, friends. To Adam, whose work sustains mine and whose love makes me brave. There were so many others. Thank you.

  The Beginning

  The disease has been in remission seven years. Now I can try to remember what happened. Not understand. Just remember.

  For seven years I tried not to remember much because there was too much to remember, and I didn’t want to fall any further behind with the events of my life. I still don’t have a vegetable garden. I still haven’t been to France. I have gone to bed with enough people that they seem like actual people now, but while I was going to bed with them I thought I was catching up. I am sorry. I had lost what seemed like a lot of time.

  I waited seven years to forget just enough—so that when I tried to remember, I could do it thoroughly. There are only a few things to remember now, and the lost things are absolutely, comfortingly gone.

  I wrote down some things while the disease was happening—there are notes from one hospital stay and a few notes from the sickest years—but it isn’t much.

  Sometimes I think the content of those days might not have finished happening. It might have begun then, in 1995, but I needed to save the rest of it until I was stronger.

  The events that began in 1995 might keep happening to me as long as things can happen to me. Think of spacetime, through which heavenly bodies fly forever. They fly until they change into new forms, simpler forms, with ever fewer qualities and increasingly beautiful names.

  There are names for things in spacetime that are nothing, for things that are less than nothing. White dwarfs, red giants, black holes, singularities.

  But even then, in their less-than-nothing state, they keep happening.

  Allegri

  I sang in a choir and took good care of my throat, and when I caught a head cold in February 1995, during my junior year of college, I took tea and herbal lozenges.

  I liked that our British choirmaster didn’t accept a head cold as a valid excuse for missing a rehearsal.

  We took our duties seriously, for in serving our duties to the Memorial Church we might achieve excellence, which many of us valued above the other virtues.

  I sang second soprano and I wasn’t fearless, so I chose only a few solo auditions per year. I sang the second soprano solo in Gregorio Allegri’s “Miserere,” a setting of Psalms 50 and 51.

  The piece was composed in the 1630s and has nine parts and is sung by three choirs standing in different parts of the church. When we sang it, the plainsong choir stood in the balcony, the solo choir stood behind the choir screen, and the rest of the choir stood before the congregation.

  At some point in the seventeenth century, it became forbidden to transcribe the music. The piece was allowed to be performed only in the Sistine Chapel on Wednesday and Friday of Holy Week. Writing it down or performing it elsewhere was punishable by excommunication.

  For more than a hundred years, legend has it, the piece was performed only at those two services.

  In 1771, the fourteen-year-old Wolfgang Amadeus Mozart visited Allegri’s church. He had a notoriously accurate ear and was a quick transcriber. Later that day, he wrote the piece down entirely from memory, and that was the end of the secret “Miserere.”

  I nursed a cold for weeks, trying to stay well enough that I could perform the piece in Cambridge, Massachusetts, on Sunday, March 5, 1995.

  Our choirmaster gave us his notes on Tuesday. He said the solo choir had performed very well, especially the second soprano, for singing a part which is quite difficult to keep in tune and which holds the group together. I wrote that down.

  I’d kept the virus hidden in my blood for weeks. The next day I let myself get sick and prepared to let the head cold run its course.

  Signs

  I still had the cold over spring break. I woke up on Sunday morning and my feet were asleep. I was at my parents’ house, and I’d stayed out late.

  I walked down the hall to the bathroom and my feet stayed asleep.

  When I splashed water on my face, I couldn’t catch my breath, couldn’t seem to hold it long enough. How long does it take to wash a face—two seconds?

  My hands were tingling a little.

  Still tingling, I finished packing, brought my bags downstairs, put them in the car, and sat in the passenger seat while my father drove the ten miles back to my college dorm.

  The dorm’s elevator went to the even floors only, so I rode to the eighth floor and slid the bags down a flight to my room, G-73.

  I phoned my parents the next night, and the one after that, and told them I’d come down with some kind of bug that was making me feel tired. I walked stiff-legged and slowly, and I was still nearly drowning every time I washed my face. My feet were numb, and my hands were getting numb, too.

  I was concerned I’d caught a strange illness, but I was more concerned that I looked drunk. I was staggering around, even to and from breakfast, and I felt people looking at me and thinking it might be time for an intervention.

  On my fourth day back at school, I fell d
own in the courtyard. Then I went upstairs and called my mother and asked her if she’d pick me up at school and take me to the hospital near their house, the hospital where I’d been born.

  She drove me home first. She said my father would meet us there, would drive back early from his office on the South Shore, and the three of us would go to the hospital together.

  That’s when I understood something might really be wrong with me.

  I remember walking from the back door of the house to the driveway, with my mother clutching my right arm so I wouldn’t stumble on the brick path, and asking, What’s wrong with me?

  My father said, very calmly, I don’t know, Sar, but at the hospital they will.

  His calmness is the reason I didn’t cry until almost twelve hours later, once I was in Intensive Care, my blood already churning through a machine, when a nurse explained to me that if the strength of my diaphragm weakened five more pounds per square inch of air pressure, I’d be intubated through a hole in my neck.

  Bad Blood

  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.

  Metaphors

  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.

  A Role Model

  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, an
d 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.