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Authors: Sarah Manguso

BOOK: The Two Kinds of Decay
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The fresh frozen plasma was thawed before it was infused. The four half-liter glass bottles of albumin were left at room temperature.
 
For the first twenty or thirty apheresis sessions, I lay under several blankets, which didn't help the cold but helped me think at least I was trying.
 
The temperature in blood vessels is warmer than room temperature, of course, by about thirty degrees Fahrenheit. I was very slowly infused with several liters of fluid that was thirty degrees colder than the rest of my body.
 
By the time I had the permanent line, the cold infusions went in very close to my heart. I need to describe that feeling, make a reader stop reading for a moment and think,
Now I understand how cold it felt.
 
But I'm just going to say it felt like liquid, thirty degrees colder than my body, being infused slowly but directly into my heart, for four hours.
 
The albumin had a taste. To be more specific, the albumin had two tastes, because the hospital bought albumin from two different manufacturers.
 
Both companies used the same 500 cc clear glass bottles, which were sealed at the narrow end with rubber drums that could be sterilized and punctured with sterile needles and connected to sterile tubing.
 
One company's albumin was the color of light beer and the other company's was the color of lager. And the dark albumin tasted worse.
 
I never could decide whether it was
chemical
bad or
organic
bad.
 
I had to taste it for three or four hours, unabatedly, and there was nothing I could do to change the taste of it. It wasn't touching the surface of my tongue, but it was going into the blood in my heart, which pumped it into every cell in my body. It was in my tongue.
 
The only thing that masked the taste of the albumin was wintergreen-flavored candy.
 
Tabitha, my favorite apheresis nurse, always arrived with a bag of wintergreen candies, individually wrapped. She picked them out of the mix for me—there were red and yellow and purple candies, too, and different kinds of mint—and left a small pile of them behind, because the taste of the albumin lasted for a while after the infusion was over, and she wanted to make sure
I had enough wintergreen to get through the rest of the day without having to taste any albumin. Without that reminder of how I'd spent the morning.
I attended a public school with cheerleaders, pep rallies, and powder-puff football. My high school's mascot was the Red Raider, and he was represented by an American Indian wearing a headdress and waving a tomahawk.
 
One day every fall, just before Thanksgiving, the principal would remind us over the public address system that today was the biggest pep rally of the year and that our school needed us to show our spirit.
 
By
school
he meant
varsity football team
. Our football team's rivalry with that of an adjacent town was the oldest high school football rivalry in the United States of America, and there was an engraved monument downtown, in front of the police station, to remind us.
 
When I was a freshman, I went to the pep rally. I hadn't figured out yet that as long as I got good grades, no one would care if I spent two entire semesters of Spanish in the photography darkroom, or if I left school after sixth period to hang out downtown at Coffee Connection.
 
At the pep rally the principal introduced the football coach, and the football coach introduced each team member individually, and everyone in the bleachers cheered when each player entered the gymnasium from one end and walked across to the other, where the coach was standing with his megaphone.
 
The football players were shirtless, their muscular chests painted with red “war paint,” and they swaggered as if they'd taken the virginity of half the girls in the sophomore class, which they had.
 
And all the women in the whole senior class, even the fat and ugly and unpopular ones, wore red felt dresses they had made, with scissor-cut fringe and matching red felt headbands decorated with white feathers, and they wore red “war paint” on their faces, too, because they were the Senior Squaws. And they were addressed by the football coach and saluted for their great spirit and for their help to the cause at hand, which was to beat Needham.
 
The cheerleaders cartwheeled in their red and white and black, regulation skintight uniforms in rows across the gym, then danced like strippers to bass-pumping music. They jumped and flashed their asses, and at the end there was a pyramid, and then more screaming, after which the football coach congratulated the young women on their display of talent and skill.
 
In a yearbook photo of this very pep rally, I am sitting in the bleachers with my friend who dropped out to go to art school, and the two of us look stoned. All around us are blurry teenagers, their faces just sharp enough to broadcast their ecstasy.
 
At the powder-puff football game the Senior Squaws wrestled in the mud and were very drunk. It was summarized, in code, in the
Senior Voice
, the underground newspaper for seniors, which detailed the events of their last month in high school, the month of spirit days (Hat Day! Shaving Cream Day!), and which was very easy to find lying around the cafeteria every morning.
 
Seven years later, I was in the hospital, too nauseated to eat. I was too nauseated not just to eat but to swallow even a sip of water.
 
I was prescribed a strong antiemetic. In suppository form. And the nurse who pushed it into my ass had been one of the varsity cheerleaders from that 1988 pep rally.
 
Like all good nurses, she understood that inserting a bullet of hardened gel into someone's rectum was just another thing that had to be done, no more or less willingly than picking up a dropped rubber glove or stripping a bed after someone died in it.
 
She radiated love without smiling. And when she finished her shift at seven that night, she sat with me, still in her tight white uniform, and we watched
Dirty Dancing
on television, talking a little during the commercials.
 
That's what she was like.
She worked the morning shift and she understood slow, simple English. Every morning she came in to help me to the bathroom, and she grabbed my arm at the biceps and yanked it up. And every day she did that, I cried out because it hurt a little and because I knew that if the tube in my chest were pulled out, I would bleed out. I wouldn't bleed to death, but I'd probably fall down, and she wouldn't be able to pick me up to see where the blood was coming from, and I'd pass out from fright and blood loss, and eventually the wound would be found and pressure would be applied, but not before I'd bled out enough to cause myself even more trouble.
 
Every day, after that happened, and after I got back from the bathroom, she gave me a sponge bath and toweled me off. Since I wasn't wearing a hospital johnny and the line in my chest was exposed, I wasn't afraid she would knock it out of the vein or pull it out by accident.
 
But then she always took out a little container of baby powder and started shaking it onto my torso. And I had been reminded by the surgeons, every time one of them implanted a line, that
nothing powdery should be used near the entry site, because the powder could get right into my bloodstream.
 
So then I reminded her, my voice raised, to keep the powder away from my line.
 
And both of those things happened every day she worked.
A new apheresis machine was delivered to the hospital. It was the manufacturer's prototype. The company had sent it out for human trials.
 
This machine worked faster than the old one. Instead of withdrawing a cup of blood, cleaning it, and reinfusing it, the new machine withdrew and reinfused my blood continuously. And it could reinfuse at a faster clip because it had a built-in blood warmer. There would be no chills, no shaking.
 
I was the first human to use that machine.
 
The day the machine was delivered, Tabitha hooked me up to the albumin, gave me a wintergreen candy, and told me an engineer was coming to talk with me—one of the engineers who had designed the new machine.
 
She brought him upstairs and left us alone. For a moment, he just looked at me, connected to the machine he had helped invent, and I just looked at him. I was happy to be able to shake
his hand, as I was using a central line and my arms were free to bend at the elbow.
 
He asked me how the machine felt, and I told him how good it felt to have a blood warmer, how I would miss it if I had to go back to using the old machine. I told him how good it was to know that the treatment would last two hours instead of four.
 
And I told him what it was like to arrive at the hospital with paralyzed legs and then to have six or seven treatments over six or seven days, using an apheresis machine made by his company, and then to walk out of the hospital on my own legs, my arms held out a little for balance.
 
He tried not to smile, but he smiled. I hope he felt proud. He had made something good, and it had helped me. And he had seen it—seen the moment his invention worked.
 
We talked about my college studies, and about his work, and about his volunteer work with the Boys Club of America. He stayed with me until a half hour was left in the treatment and then said he would go and find Tabitha. She needed to disconnect the last of the four bottles of albumin that had emptied into me, and to disconnect me from the machine, and to seal and remove the four-liter bag of my dirty plasma. Tabitha came back and did all the things she needed to do. The engineer said goodbye.
 
But he returned, with a bouquet of flowers.
A spinal cord injury can paralyze you in a moment, but the paralysis of my disease is a long story. Worse, then better, then worse, then better. For years.
 
A woman rides her motorized chair up a ramp and onto a stage. Ten feet away from the podium, she parks her chair, gets up, and walks a few steps, very slowly, to accept her award.
 
What a sickening prop.
 
But people forget a woman in a chair is strong enough to walk a few steps each day and has saved this day's steps for the acceptance of her award.
 
Chair or no chair: a binary relation. But the vicissitudes of moving the body around are infinite. You never know what a person in a chair can do.
 
I saw two young women at a lecture once, one of them in a wheelchair that looked like a piece of expensive Italian furniture. Her girlfriend sat down and said
You want to do a transfer?
and the girl in the chair said
Yeah
and maneuvered her chair next to the bank of auditorium seats, placed her hands on the arms of the first seat, and swung herself into it with her ropy upper body. Then she reached over and folded up her hot little wheelchair.
 
Other than the ones I used in the hospital, I never got my own chair. When I couldn't walk I stayed in bed, because it was always assumed I'd get better soon, and the chair was for people who were done forever with walking.
 
I was afraid of the chair. It would indicate I wasn't going to get better. And my doctors didn't want to believe that any more than I did.
 
Chair or no chair: a binary relation. Bad or good, sick or well, hopeless or hopeful.
 
This is how I described paralysis to my friends:
Sit down right next to me on a bench or a sofa, me on the left, our four thighs in a row. Lift your right thigh and put it back down. Then the next thigh over, lift it and put it down. Then the next thigh after that.
 
That feeling of trying to lift someone else's thigh with your own mind is how it feels to be paralyzed.
 
Though my worst relapse paralyzed me from the thighs down and weakened me everywhere else, most of my paralysis was always in the process of getting either better or worse. The state of my health changed daily.
 
During a week of plasma exchanges, I'd be able to move a little more each day. That's how quickly the myelin regrew. If I were waiting at home to get sick enough to be readmitted to the hospital, I'd be able to move a little less each day. That's how quickly the myelin was destroyed by my anxious blood.
 
My feet were often completely paralyzed, because they'd go first and weaken the most. To this day, scratching my arches, even lightly, is excruciating, but the toes and the rest of the sole can take pins. There was some permanent damage, either to the axons or to the myelin or both. Now my feet are both hypersensitive and hyposensitive.
 
I was always being moved around, given physical therapy and having my bedsheets changed under me, so most of the big parts of my body got at least a little movement each day.
 
But the toes, when one is lying down, do not get a lot of attention. After a week or more with paralyzed feet, my toes needed to be moved right away. I couldn't bear the stillness anymore. It was like a full bladder. When my parents visited that afternoon, I asked my father to move my toes. He grasped one set of toes in each hand and bent them up and down and all around in a bunch for a few minutes. And either he or my mother did this every day they visited until I was strong enough to sit up and reach my toes myself.

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