Research Notes · 02/07/2014

A Life In Men

Our Research Notes series invites authors to describe their research for a recent book, with “research” defined as broadly as they like. This week, Gina Frangello writes about A Life In Men from Algonguin Books.

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My daughters are thirteen, but sometimes I still read books aloud to them. My mom did that with me, and besides, sometimes this actually gets me reading interesting books I’d never normally encounter. Recently I read them John Green’s The Fault in Our Stars, in which the narrator has a fictional kind of cancer. I read the book and immediately thought, Maybe I should have done that. I mean, maybe the way of making a disease both entirely “universal” and yet exempting yourself from its factual medical and pharmaceutical details is to simply create the disease yourself. It’s not a bad idea. And yet ultimately, for me, something would have been lost if I’d done this for A Life in Men.

My protagonist, Mary, has cystic fibrosis. The novel opens in 1988, when she is 19, and ends in 2001, shortly after her 33rd birthday. Mary was born in 1968, which means that most real life people who would be her “peers” are already dead. The average life expectancy for people with CF born in 1968 was 23, which was actually a radical improvement from only a short while prior, when few people made it out of childhood. Adults with CF are, as one of the characters in the novel calls them, “pioneers,” and the medical treatments that keep them alive are new frontiers.

I chose to give my character a disease I don’t myself have as a kind of homage to an old college roommate of mine who had cystic fibrosis, and was an avid traveler despite her disease. By the time I began writing the novel, she had been dead for a decade already. I didn’t know any other adults with CF. I asked a friend of mine who is a nurse, and who has a daughter with CF, if she would read the novel for me as I was writing it, and help me with medical details, but when she learned that the protagonist dies at the end of the book (this is hardly a spoiler, as I think most readers will, honestly, expect as much, and as the novel also contains flash forwards that reveal this fact before it happens), she understandably said she didn’t think it would be a good undertaking for her emotionally. So I was left with the task of researching the disease myself.

In 2007, when I began writing, “research” still mainly consisted of buying reference and self-help books designated to help people with CF and their families treat and process their condition. There were some discussion forums for people with CF online, where I could get on and read about people’s experiences with medications or complications of their disease, but these were somewhat hard to find. Within just a couple of years, however, while I was still writing, the blogosphere had exploded, and a very active community had formed among adults with CF. Information became easier to find, the plus side of which was that… information was easier to find. The minus side was that information became wildly contradictory, as is usually the case when a discussion widens to include more voices. What, a few years prior, might have seemed a “consensus” on a certain facet of the illness became instead terrain that might be widely dissented. What meds worked for one person were a disaster for another; what seemed to be a common “psychology” among people with this life-shortening lung disease could easily be shattered by people who processed their disease differently; what treatments were first available in which years could seem inconsistent and hard to pin down, and so on. At first, the widening of the arena felt confusing, as though I were obligated to include every perspective, and if I failed to do so I was “cheating” or misrepresenting or lying…

Ultimately, my perspective on this changed — I think it had to or I would have been crippled and unable to take the leap out of the blogosphere and into the world of my own novel. I told myself that what was “confusing” should be freeing — that there is no more “one CF experience” than there is one way people experience love, or one war story, or one cancer story, or one definitive novel about losing a parent. CF is not a condition widely represented in literature, and so I felt a certain obligation…but that didn’t mean that I could represent every person on the planet who had experienced it, any more than I could represent the one experience of my former roommate, whom I hadn’t really even known all that intimately, not nearly enough to depict her private bodily realities in a book. And so, at a certain point, I stopped reading the blogs. I put away the reference books. I started just writing, with things I had read in my memory, yes, but without trying to depict them in some doggedly faithful way, like a journalist or a spokesperson. I decided to give my protagonist a rarer genetic mutation so that her condition didn’t manifest “typically,” whatever that meant… I went a little John Green renegade. It was liberating, and I began to get closer to what felt like an emotional truth. I don’t know that any work of fiction is ever ultimately “about” one particular disease. Fiction is an arena that raises more questions than it answers and inherently should be able to speak to people even if they have never shared the precise experiences of a novel’s characters. Cystic fibrosis, which had served as an impetus for the novel’s inception, served as both a real bodily experience for my character Mary (as for the people who face it in real life), and yet also, within the context of a novel, as a metaphor for the mortality and dwindling time we all face.

Just a couple of months ago, I met with some women from the Cystic Fibrosis Foundation, in an attempt to brainstorm ways to give back to the community that had inspired me. I think it’s a very real thing, a very problematic thing, that almost all characters in novels are “healthy,” and among those who are not there isn’t much variance of illness: we see a lot of cancer, certainly, but I have personally never read a book about someone with CF other than the work of Bob Flanagan, an SM performance artist whose writing… let’s say isn’t for everyone. For these reasons, I’m very glad that I retained the concept of writing about a real disease, not a made-up one, even if creating one would have given me a greater artistic license and freedom. I was nervous about giving my novel to people whose life work centers around helping people with CF… I was anxious that the only things that would seem important to them might be the things I didn’t “get right.” But around the same time, one of those strange life coincidences that, if they happened in a novel would strain credulity, happened. It turned out that I actually do know someone with CF — another writer — who is simply not public about her condition. We have many friends and connections in common, and when she learned about A Life in Men, she reached out to me. Naturally one of the first things I told her was how much I wish I’d known about this when I was writing the book, because I had needed a guide, and someone who could correct my errors. But she basically said the same thing I had concluded, which is that there isn’t any “one CF experience,” and that it would have been a mistake to make that some guiding principle. I think that, as a writer herself, she has an intuitive sense of the difference between artistic freedom vs. trying to be a spokesperson, and that’s part of why she’s shied away from outing herself in her own work… something she’s working on changing, actually, without falling into that trap. My conversations with her have already probably informed me more than any reference book ever could have…and yet it feels fitting that only now that the novel is being released into the world is it being read by a woman whose bodily experiences will be closer to my protagonist’s than mine have been. It feels right somehow to have written the novel without a net, in a kind of hybrid space between research and imagination.

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Gina Frangello is a cofounder of Other Voices Books and the editor of the fiction section at The Nervous Breakdown. She is also the author of one previous novel and a collection of short stories. She lives in Chicago.