Tuesday, May 13, 2008

A lyric speaker

A piece of amazing good fortune yesterday morning: I found on my doorstep, unsolicited, a book that I did not yet know was exactly the book in the world I most wanted to read!

In the usual chaotic way of dealing with stream-of-books-entering-apartment-as-I-am-trying-to-exit, I tore open the envelope from FSG and made a mental note of its contents and then dumped both envelope and book on the floor for later dealing-with....

But as I tidied up yesterday evening (I do not understand why it is so much psychologically easier to dump things on the floor rather than leaving them on a table, rack or shelf, except that tables, racks and shelves are of course already overloaded with books, papers and the detritus of triathlon training!), I found myself opening the book (which I had fully intended to stow somewhere in a to-be-read stack) and reading the first paragraph, and the next thing I knew it was an hour and a half later and the only thing I had stopped to do was send an outraged e-mail to Ed Park which I will quote for full effect though the information it contains reduplicates what I have already said here:
Date: Mon, 12 May 2008 21:15:01
From: Jenny Davidson
To: Ed Park
Subject: but...

...this book of sarah manguso's is quite extraordinary!!!! it arrived on my doorstep this morning, i picked it up just to put it away really, and have found myself mesmerized--it is exactly the book i did not know i needed to read this evening?!? hmmmm, this was fairly miraculous, i am just going to go and read the rest of it now, but it is so well-written and actually wise, it is good for my soul!
The Two Kinds of Decay is Sarah Manguso's memoir of the years of the mysterious illness that hit her in her early 20s. It should be read by anyone interested in contemplating the ways a life may be wrenched off course by calamity--more than that, though, it's a poet's book, and the prose has a distinctive quality (quality in both senses of the word) that makes me think of my short list of utter indispensables (Primo Levi, Georges Perec, W. G. Sebald). Plain and ornate at the same time, like the poems of George Herbert....

I will eat my hat if this book does not win a lot of prizes and sell a lot of copies, it should be on writing class syllabi and on medical school syllabi and generally just pressed into the hands of everyone I know!

Instead of giving a sensible description of it, I am going to take the liberty of transcribing my favorite chapter. (Links to some of Manguso's other writing can be found here.) Do yourself a favor, buy yourself a copy of this book as soon as possible...

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 some 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.
There are many reasons I like this chapter, but one reason is the way it stabbed me with a memory of my grandfather in the nursing home where he spent the last couple years of his life. He lived too long, that is the long and the short of it--he was trapped in his own body by Parkinson's, and his sheer stubborn physical sturdiness kept him alive past the time when it would have been better to have died. One of the things that most afflicted him, aside from his helplessness and despair, was this sensation of numbness and tingling pain in the feet. It was not a symptom the doctors seemed to know how to deal with. In general I felt quite helpless to do anything to improve his situation, I lived far away in another city and even when I was in London a visit only seemed to serve as a strong reminder to him of the misery of his condition. The one thing I ever thought of that helped was when I brought him some peppermint foot lotion from the Body Shop and rubbed his feet with it. It was a small thing; it made a small but important difference...

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