Sarah Manguso - The Two Kinds of Decay

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At twenty-one, just as she was starting to comprehend the puzzles of adulthood, Sarah Manguso was faced with another: a wildly unpredictable autoimmune disease that appeared suddenly and tore through her twenties, paralyzing her for weeks at a time, programming her first to expect nothing from life and then, furiously, to expect everything. In this captivating story, Manguso recalls her struggle: arduous blood cleansings, collapsed veins, multiple chest catheters, depression, the deaths of friends and strangers, addiction, and, worst of all for a writer, the trite metaphors that accompany prolonged illness. A book of tremendous grace,
transcends the very notion of what an illness story can and should be.

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What if I’d been told someone would be standing over me, massaging my collarbone, while I lay blindfolded? That’s something I would have tolerated. And up to the point that the lidocaine began to wear off, that’s almost what it felt like.

If the procedure had lasted only a couple of minutes, I might have been all right.

But the doctor flubbed the procedure. He kept getting the needle in, but he couldn’t jam the tube over it. The entry angle was too sharp.

So the lidocaine began to wear off, and the doctor kept telling the interns and the surgery residents exactly what the trouble was, and he became frustrated when he couldn’t get the tube into me, and tried another, thinner tube, and sweated onto me, and stunk up the entire room with his frustration.

He tried again and again to jam the tube into my vein. Every now and then he had to stop and apply pressure, as I was bleeding. At one point I thought I felt a jet of blood spurt into my chest cavity, and that’s when I lost my composure.

Months later, after his hair had gone from steel gray to white, my father told me it had looked like a horror movie.

The Taste

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.

The Cheerleader

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.

The Forgetful Nurse

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.

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