‘Two Kinds of Decay’

    • Anonymous
      July 14, 2008 at 9:10 am

      This looks like a very interesting new memoir, written by a woman hit by severe CIDP in her early 20s. The reviews are good (if not riddled with misinformation — like implying that untreated CIDP is always fatal). Has anyone read it?

      A poet’s quest to capture her excruciating illness.
      By Amanda Fortini (Slate)
      Posted Monday, July 7, 2008, at 6:39 AM ET

      In the predictable universe of the illness memoir, doctors save by diagnosis and fail by misdiagnosis, alleviate symptoms or unintentionally increase them, order too many tests or refuse to test enough. Patients are the authors of these accounts, but physicians are the heroes and villains whose prescriptions (or lack thereof) drive the stereotypical narratives of salvation or sabotage. Sarah Manguso, winner of the Rome Prize and author of two books of poetry, cuts through these conventions in Two Kinds of Decay, a prose chronicle of her harrowing battle with a rare and incurable autoimmune blood disorder. Manguso is the diagnostician here, sizing up the usual doctor-patient drama in the terms she knows best. She suggests that the inevitably conflicted relationship—fraught with tensions and distorted projections—arises from the slippery nature of language, in particular the language used to describe the necessarily subjective experience of bodily pain.

      While a 21-year-old junior at Harvard, Manguso was beset by a perplexing constellation of symptoms: numbness in her hands and feet, feebleness, difficulty breathing. She was diagnosed with chronic idiopathic demyelinating polyradiculoneuropathy—a disease in which rogue antibodies present in one’s blood plasma attack the myelin sheath, the protective and connective covering of one’s nerves. For four years, Manguso suffered numerous episodes of escalating paralysis that could be reversed only through an arduous process called apherisis: Her veins were drained of the offending plasma and infused with new. (Left untreated, the disease progresses to the diaphragm, leading to suffocation and eventual death.)

      Two Kinds of Decay recounts her terrifying ordeal in a series of brief, elliptical vignettes composed of sentences as spare as they are unsparing. Though the overall arc of the story is a conventional one, moving from illness to wellness (Manguso’s disease eventually went into remission), the book is less a sustained narrative than a collection of assorted memories—a reflection, perhaps, of the way the mind records trauma. “There are only a few things to remember now,” Manguso writes, “and the lost things are absolutely, comfortingly gone.”


    • Anonymous
      July 16, 2008 at 1:41 pm

      havent head of this, but i’ll keep my eyes open for it. it sounds interesting to me because i will see things from both sides, as a patient and as a health care professional. thanks!

    • Anonymous
      July 30, 2009 at 9:42 pm

      I was very surprised to not find more discussion about this book here in this forum. This is an extraordinary book, and it is all about a young woman`s struggle with CIDP. When I found a copy of it at the local library, I sat down and read it on the spot–all of it!! It is a short, highly readable book, with a very interesting way of telling her story. I highly recommend it. BTW, her very serious disease eventually went into remission…

      look up Sarah Manguso on amazon.com or Google. This was just published in 2008.


    • Anonymous
      July 31, 2009 at 1:40 am

      I will go out and find it. I love a good book especially one that is relevent to me. maybe if enough of us go out and read it we can start a discussion thread on it

    • Anonymous
      August 1, 2009 at 11:34 am

      Just keep in mind, this book is about one person’s experience, views and not researched very well before somethings were written-for example the part about no treatment leads to death-Totally a False statement. I’m not saying its a bad book or anything like that, I just don’t like to see people writing things that just aren’t fully researched and true statements. Enjoy the book.

    • Anonymous
      August 28, 2009 at 5:38 am

      derailleur, Thanks for bringing this thread back up. I too was surprised a year ago at the lack of interest on the forums in a memoir about CIDP by an award-winning poet. There is so little published information about this disease, I thought everyone would want to know that a book about it was getting huge attention outside the medical world

      I got a copy of the book as soon as I could, and like you, read it in one sitting. I thought it was beautiful. The writing was incredible and honest, and it’s a story all of us can relate to in one way or another. I hope more people read it. I’ve even recommended it to people who have nothing to do with the disease.