"The Two Kinds Of Decay"

“The Two Kinds of Decay” by Sarah Manguso is a must read if you are into more artfully written, abstract tellings of chronic illness stories.

Manguso was diagnosed with Chronic Idiopathic Demyelinating Polyradiculoneuropathy (CIPD), somewhat like a chronic form of Guillain-Barre syndrome. But as she tells readers, “That’s the shortest name for what’s wrong with me […] and there isn’t a proper name for it yet” (19).

She is telling the story being, as I understood it, over a decade removed from the “action” of her illness. The book reads like a series of poetic blog posts, with memories of the events coming in spurts; no “chapter” is longer than five pages. Each story stands on its own and comes together to create an intricately weaved story.

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“She said my father would meet us there, would drive back early from his office on 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” (8).

I can really relate to this and the love/hate relationship my illness has with my parents. On the one hand, it’s comforting to have them there – familiar in an environment of otherwise unfamiliar haze. On the other, having them there adds a level of anxiety, of importance, that maybe I could (attempt to) ignore if I was on my own.

“It was 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” (12).

Such evocative imagery makes the reader feel that they are present with Manguso. She makes the reader sense experiences that aren’t easily sensed, and once imagined, aren’t easy to forget.

“All autoimmune diseases invoke the metaphor of suicide. The body destroys itself from the inside” (14).

We are told this by our doctors. At least that’s similar to what I was told. Your body has mistaken good, healthy organs and tissue for foreign substances that need to be destroyed. But the self-help books we read tell us that this negative thinking does nothing for the coping and/or healing process. It’s something, though, that I think stays with us for a long time.

“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” (15).

I just find this passage beautiful in its simplicity.

“My symptoms were so unlikely, by the book, that despite my reports of them, they were assumed not to exist” (30).

Haven’t we all been there? Weird and unexplainable symptoms are the hallmark of autoimmune diseases. And so many of our stories have started with doctors who didn’t believe us, who doubted that we were actually sick.

“The injection site stayed sore for five years, but not once during those years did I mind remembering the Irishman who had shot me full of [Vitamin] K” (73).

It’s funny the things that we remember and the things we opt to forget in this process we call illness. I wish I could say that there was a hot doctor that made me believe everything was going to be okay. But that’s not real life, is it?

“He was like a Black Panther of pharmacology. By any means necessary. I loved him immediately” (89).

I just love the irony of this passage and its symbolism.

“The only hard thing I’d done in my life was recovering from a disease. My self-image had been highly susceptible to that event. It constituted most of my identity” (136).

I think no matter how hard we try to keep our illnesses from impacting us at the core of who we are, it is bound to happen sooner or later.

“I grew used to being sick and looking forward to recovering. Then I grew used to being well again for a short while, knowing I’d be sick again sooner or later. Then I grew used to having no prognosis at all, because with a mysterious disease, all things are possible” (165).

Isn’t this game exhausting. Back and forth, well and sick, sick and well. It seems like there is no end, no reprieve from the roller coaster ride, the up and down, of what it means to have a chronic illness.

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This book is beautifully written. It is spellbinding in its complexity and craft. It reads more like poetry than prose, more like fiction than non-fiction. But it is a real story about someone dealing with illness and all that comes with it.

While I find every chronic illness story I read unforgettable, this one is memorable in other ways. The way Manguso describes the events of her illness and subsequent recovery emphasizes their medical unrest.

This isn’t your everyday, garden-variety health or self-help book. It’s hard to describe this book completely because I’ve never read anything quite like it. The details are so abstract, yet so vivid.

Manguso suggests in the book that, “This is the usual sort of book about illness. Someone gets sick, someone gets well” (183). I am inclined to completely disagree.

There is a dark humor present in the book that not many people could pull off successfully. Or maybe they could, but they wouldn’t garner much sympathy from the reader.

Manguso tells the story of eating French fries during aphaeresis treatment, only to realize that the fat from the fries would end up in the bag along with her plasma.

I mean, the stories she tells seem so unreal, but for those of us who have experienced chronic illness, it is only unbelievable in that we know that these things can and do occur.

You may also want to read the review from the New York Times or visit Sarah’s website, http://www.sarahmanguso.com/.

(Thanks, Jenni, for bringing this book to my attention)
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(Manguso, Sarah. The Two Kinds of Decay. New York: Farrar, Straus & Giroux, 2008)