Getting sick was a process just as getting well was a process.In 1995, just as American writer Sarah Manguso was in the midst of whatever else a twenty-one year old should be in the midst of, she discovered that she had "a wildly unpredictable disease that appeared without warning" and "tore through her twenties, vanishing and then returning, often paralyzing her for weeks at a time." The result of her working her own way through such a thing, after two collections of poetry and a book of short fiction [see my previous note on her poetry here], as well as receiving the Rome Prize in 2007 by the American Academy of Arts and Letters, is her beautiful and matter-of-fact prose memoir, The Two Kinds of Decay (New York NY: Farrar, Straus and Giroux, 2008).
The most important things must happen slowly, incrementally.
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.One of the things that had struck me about her earlier work is in just how intelligent, wry and, dare I say it, wise Manguso's writing is, without being overtaken by overwrought emotion or overthinking. Her writing is just so damn sharp. In The Two Kinds of Decay, Manguso's prose style is no different, writing her unsentimental way down to the bare bone of the essential parts of the story, writing a deeply honest thinking experience through her disease, and through her own history, written from after nine years (as she writes, so far) of remission.
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.
Either before or after that—though it doesn’t matter now, since I remember things in the order that they make sense—my primary care doctor visited me and said I'd already endured something much worse than most people have to endure in an entire regular-length life. His voice shook. He was forcing tears either forward or back.The short sections read almost Brautigan-like in their individual shapes, like small accumulations that eventually make themselves into the size and shape of a book, something that even Richard Brautigan found daunting, and far easier to accomplish through such individual and nearly bite-sized sections (her collection of short fiction, Hard to Admit and Harder to Escape, published by McSweeney's, exists almost the same way). She even writes of the same kind of consideration, almost explaining her structure without talking about it, writing:
Before the diagnosis, I would have loved hearing him say that.
The doctor was older than my parents, and he must have had plenty of younger patients, but he didn’t understand yet that suffering, however much and whatever type, shrinks or swells to fit the size and shape of a life.
I don’t know how to write a novel. I like to ask writers who write novels how they do it. How they write something longer than what can be held in the eye comfortably, at middle distance.This book, too, explains part of why you don’t have to scratch too much surface to find death in quite a number of her poems. But wasn’t it Brautigan's own daughter who said that You Can't Catch Death?
How can I stop thinking about the disease long enough to write about anything else? How can I stop thinking about everything else long enough that I can write about the disease?
My friend Isabel says, When you're writing even a short novel, with at least a couple of subplots, and God only knows how many characters, your brain holds the volume of it beyond the ability of your consciousness.
Our neighbor told us her mother had died just that week and that she was at the dump with some of the things from her mother's apartment. Alzheimer's, she whispered.After watching my own mother's illness from the mid-1970s on, and watching whatever else I've seen anyone else go through (including whatever it is one calls one's own suffering), what amazes about Manguso's book is more than the sharp, clear writing and the astute commentary, and more than her refusal to wallow in any amount of self-pity; what amazes is just how aware and clear-headed she is of her own situation, even during the passages when she claims she is neither. This is a remarkable mind that has produced a remarkable piece of writing, through everything else she has gone through. Listen to this passage, from just near the end of the book, as Manguso writes:
And my mother told our neighbor we were sorry, and that her mother, my grandmother, had had Alzheimer's, too.
Then the neighbor saw the pile of canes and walkers we'd just left on the ground, and
looked at my mother, and indicated she understood how sad it was that my mother's mother had used those things until she couldn’t walk anymore.
How sure our neighbor was that her suffering was the only kind of suffering.
And how sure I was that mine was worse.
This is suffering's lesson: pay attention. The important part might come in a form you do not recognize.
You might not know to love it.
But to pay attention is to love everything.