(Originally published in the Newark Star-Ledger in June 2008)
The poet Sarah Manguso was attending Harvard University in 1995 when she was struck down by a rare autoimmune disease called CIDP, where the body produces antibodies that destroys the nervous system. Manguso went through 50 plasma replacements and at times suffered almost complete paralysis. The disease went into remission in 1999, but was then followed by five years of severe depression.
In her new memoir “The Two Kinds of Decay”(FSG, $22), Manguso uses stripped down vignettes to create the terror of a disease that may start as numbness in the feet, but will completely incapacitate and even kill it sufferers. This is not a “rah-rah” survivor story, but a brutal tale told with black humor about Manguso’s refusal to capitulate to a devastating disease. It is a story about infected chest tubes, experimental drug protocols, sex as a lifesaving measure and a fierce woman coming back from an absolute physical collapse and steroid-induced depression.
Manguso, 34, was educated at Harvard and the Iowa Writers’ Workshop and is the author of two poetry collections, “Siste Viator” and “The Captain Lands in Paradise,” and has written for McSweeney’s and the Believer. Manguso spoke to freelance writer Dylan Foley by telephone from Rome, where she is a fellow at the American Academy of Arts and Letters.
Q. What brought you to writing your memoir?
A. It was in the summer of 2006. I was at the MacDowell Colony (in New Hampshire), trying to write a third poetry collection. I wrote an essay about social class that mentioned the tube in my heart. When I wrote the essay, I realized that I needed to write another essay about the tube and contextualize it. I just kept writing. I gave myself the project of writing one vignette a day from those years. It was a pleasant, easy exercise because I wasn’t thinking about it as a book. There was no pressure.
Q. Why do you use short, stark episodes, and are they influenced by your work as a poet?
A. You are on to something when you accuse me of being a poet. I really only had practice writing short texts, very short stories and poems. I was doing what I was comfortable doing. I don’t really like description. It seems like filler.
Q. Why did you get rid of the doctor who expressed pity over your medical condition?
A. It really was a strong instinct. It was a result of several facets of my personality and my surroundings. I was at this strange college and had grown up in New England, where people tend to be reserved. I had some very strong instincts on what would be helpful in my recovery. Not all of them were correct. I refused to talk to psychiatrists when I was still very sick. They kept sending them into my hospital room and I kept sending them out. I thought that if I started feeling anything, it would consume me, and I didn’t have time for that. That is what informed my reaction to my doctor. I know he meant well, but he did not align with the goals I set for myself. I was 21 and I thought I knew everything. I was very hard headed.
Q. At one point you seek “the cure” with your friend Victor, having sex so you can stop the antibodies that are destroying your body. What made you do this?
A. I was young and hadn’t had a lot of opportunities to goof around. I guess I had the young person’s concept of the power of meaningful sexual intercourse. The character I called Victor was really a uniquely generous and almost mythically empathetic person. It just made sense.
Q. Towards the end of the book, you are rather hard on yourself, that the years battling your autoimmune disease damaged your own sense of empathy. How did you address this?
A. I don’t think that I was being hard enough on myself in the book. I’ve really become a very hard person. For a long time, I was unwilling to address that for fear of the self pity and anger I might feel. I went ahead as this hard, not-so-self-aware, not very empathetic person. In 2004, I had this very unstable euphoria. It was a wild time. At the end of that period, I realized I had to change my life and completely breakdown all my hard ideas on how to function and how to treat other people. After 2004, I started handling the things I had refused to address.