Acclaimed literary nonfiction writer Elisabeth Tova Bailey, author of The Sound of a Wild Snail Eating, answers five questions from journalist Paula Kamen, author of Finding Iris Chang: Ambition, Friendship, and the Loss of an Extraordinary Mind, about finding resilience in the face of debilitating illness, and the secret life of gastropods. Elisabeth was recently awarded Stanford's 2012 Saroyan Prize in the nonfiction category for The Sound of a Wild Snail Eating. 

 Paula: Your book is about your year of observing the surprisingly fascinating life of a snail at your bedside. As I read it, I kept thinking of one other: Virginia Woolf's 1930 essay "On Being Ill."  They both were lyrically written, economical in size, and quietly powerful. As Woolf argued, the alternate underground universe of the ill is a greatly under-covered topic in literature.

This includes one of the illnesses with which you were eventually diagnosed: chronic fatigue syndrome, or CFS, also known, in other countries, as myalgic encephalomyelitis, or ME.  

 How does your book add to the dialogue about these auto-immune related illnesses -- that effect women more frequently then men -- and that are still not well understood?

Elisabeth: With its emphasis on natural history, my book is unusual as an illness narrative. There is the assumption that women tend to be more emotional than men, even more so when experiencing or describing their illnesses. So I wanted to come at the experience of illness from a different angle. Instead of writing directly about illness, it became the backdrop against which I tell the natural history of an individual snail.

The snail lived in a terrarium at my bedside, and that simple framework draws readers in. They become intrigued with the snail. In order to follow the snail on its adventures, they have to enter into the world of illness as well—a world they otherwise might not enter, might even want to avoid. Once the emotional bond with the snail was in place, I could then move deeper and let the reader explore how illness can isolate a patient from society.

The natural-history focus attracts a readership of both genders, and not just patients but also readers from the healthy population. That expanded readership lets the book educate readers who might not otherwise read a women’s illness narrative.

Although my diagnosis is spelled out in the epilogue, it has been interesting that reviewers will often refer to my “mysterious neurological disease.” Readers are so engaged in the story that my specific diagnosis becomes less important. No one questions it. Who could watch a snail for a year unless they were severely ill?

Paula: What have your readers with this illness told you they most identify with, that they haven't seen expressed elsewhere? 

 Elisabeth: I receive incredibly moving letters from readers. They will often quote back to me a sentence or two from the book and say that I’ve captured completely what they experience. It’s often different sentences for different readers, but usually it’s that I’ve revealed how they have felt isolated from society by their illness or how their bodies let them down, or the level of profound weakness they experience.

Describing the level of weakness caused by mitochondrial and autonomic dysfunction and chronic fatigue syndrome is very difficult. We have endless descriptive words for pain: sharp, dull, aching, throbbing, but it is much harder to explain the sensation of profound weakness, which is a truly awful feeling. It’s difficult to describe it directly and so in writing about it I often wrote more about how it limited me than what it actually felt like.

The lack of vocabulary to describe the sensations of “weakness” is a problem in these sorts of diseases—it limits diagnoses, discussion, and understanding. There is the well-known visual pain management chart of a person still able to smile at a pain level of 1 or 2 and crying at a pain level of 10. We need a weakness chart that can be that easily diagnostic as well.

Paula: How strongly did you identify with the gastropod?

Elisabeth: At my worst level of illness, my life matched its life more than that of my own species. So I identified with the gastropod's way of life and sense of time quite strongly.

I also envied many of the snail’s traits. What human would not want to be able to climb straight up a wall or glide across a ceiling or have strength ten times what is normal for us? And if we could hibernate when times were tough, think how useful that would be! To find myself envying the snail put the limits of our own species into perspective, and that was humbling.

The snail as a whole animal is what astounded me most. What appears at first to be a simple creature is actually a complex being, capable of everything any other animal form is capable of: a complex love life, an epicurean appetite, finding a comfortable place to sleep, skilled locomotion, multiple defense mechanisms, that’s what was so riveting. That I could write an entire chapter on slime or another entire chapter on the way a snail hibernates—there was just so much to say.

Paula: I appreciate all the journalistic research you did about snails, which fit seamlessly into your personal story. What were the most extreme measures you took to find quotes from literature and science about gastropods?

Elisabeth: Research for the book was a fun, surprising, and often unexpected adventure. I started off with about 5,000 words of only my personal snail observations and wondered if I could find enough research material to reach a book-length word count. You would think the research on a snail might be mundane, but it wasn’t. I sifted through several hundred years of poetry, literature and science.

I love to find quirky unusual bits of information and I wasn’t disappointed. There were  many wild snail chases. In search of a good quote on the love life of a snail, I found a song from the film Microcosmos and was sure it would offer a perfect epigraph for the chapter on snail courtship. But no one could figure out the song’s language. First we thought it was in French, then Italian, eventually we discovered it was 16th century Neopolitan, then Lombardian. In the end I did get it translated but this particular wild-snail chase went on for many months. And then—this was heart-breaking—when I had the final translation there was not a single mention of a snail in it! But that was okay too; the search itself had kept me intensely interested in the research. Curiosity is the writer’s most critical muse.

Paula: Now for the toughest question. Your problems with neuro-immune illness are ongoing. While you illustrate how those problems have affected your quality of life, do you think that readers may not realize how they have become life-threatening to you -- specifically because of lung and bone-density issues?

Elisabeth: That is a challenging question. I am losing bone density at a dramatic and unprecedented rate. I also had an inadvertent exposure to a shower curtain that had a toxic fungicide coating that damaged my lungs, mitochondrial dysfunction puts me at higher risk for toxic exposure. But I didn’t want to dwell on these situations in the book, since what kept the narrative moving forward was the focus on the snail.

The loss of a healthy life and everything it encompasses is simply unfathomable. We never truly know what we’ve lost, but those of us with debilitating illnesses do get glimpses now and then of that loss, and it is so devastating that one really can’t dwell on it.

I set out to share the snail story with readers, and halfway through the writing process I realized I was also searching for my own answers. Why did illness exist and how, as an atheist, could I deal with what had happened to me? How does one dovetail the hard science of disease with the emotional and physical experience? I do not believe that things happen for a reason. Things happen; then we try to make sense out of what happened.

In writing the book, I did find my answers; I came to an understanding of disease in light of its role in evolution. There was a point in the early years of my illness when I felt like a failure in the evolution of my species. My body had let me down, and in an earlier century, even an earlier decade, I would have died. But because the development of modern medicine is actually part of the evolution of our species, I had been kept alive. So after a number of years had passed, I realized that I was actually a success in terms of evolution—I was and am still alive.

Elisabeth Tova Bailey’s book, The Sound of a Wild Snail Eating, has won a National Outdoor Book Award for 2010 in Natural History Literature and the John Burroughs Medal Award for 2011. It was named to the top 10 Science and Technology books by the American Library Association’s Booklist editors, and appeared on many other 2010 top book lists, including NPR’s “Morning Edition.” Editions have come out in the UK and Australia, and Chinese and German translations are forthcoming -- as are half a dozen reviews in the medical humanities field. For more information visit the author’s website: elisabethtovabailey.net

Paula Kamen, a Chicago-based journalist, is the author of four nonfiction books, including All in My Head, and most recently, Finding Iris Chang: Ambition, Friendship, and the Loss of an Extraordinary Mind.