Novel Looks at how ALS Complicates Relationships with Others and Yourself

by Kathy Wechsler on Fri, 2008-02-01 17:00
You're Not You Cover

The novel You’re Not You tells the story of a college sophomore, Bec, who is uncertain about her chaotic personal life and future career interests and options. When she answers a want ad seeking a part-time caregiver for Kate, a married, professional woman in the late stages of ALS, she doesn’t expect to learn valuable lessons about life, love and trust.

As Bec becomes involved in the lives of Kate and her husband, Evan, the fine lines between friendship and employee obligation begin to blur. You’re Not You tackles the controversial topic of deciding when to die and how this decision affects others, and the under-represented issues of personal control and sexuality among people with disabilities.

You’re Not You so compellingly portrays these themes that you may wonder if it’s based on a true story. It’s easy to relate to both Bec and Kate, and their devoted friendship is one that closely resembles the bond between caregiver and client. Kate and Evan’s deteriorating relationship and the impact (both physical and emotional) of ALS on Kate also ring true.

Interview with the author

Michelle Wildgen of Madison, Wis., is a writer and editor whose works include fiction, essays, reviews, and food writing. She’s currently senior editor of the literary quarterly Tin House Magazine and an editor with Tin House Books. You’re Not You is her first novel.

Michelle Wildgen
Author Michelle Wildgen

Q. What would you say is the theme of this book?

A. Tough question. I actually try not to think in terms of one theme for a story or book, since I like to attempt to get at a feeling of complexity and I find if I am thinking of one overarching theme I may not let myself reach as broadly as I would like. But as far as ideas I kept returning to, I would say that it’s about the limits of our duties to others, and the confusion over where those limits lie. And about what happens when a normal life gets shifted in a way that makes every single aspect new and different — for both Kate and Bec.

Q. Why did you decide to use ALS as the vehicle to express your ideas?

A. I met [individuals with ALS] through friends. I had never had the specific idea of writing about ALS before, though I look back and see I had written about various kinds of disability or illness before I wrote this. The failure of the body to do what it once did, or what it does for others, and all the complications it leads to, is something I’ve returned to a few times. I was very struck by the need to have someone speak for you when illness has made communication difficult for all but a few. I had never really considered that before, how much this change affects all aspects of life. Voice plays a role in so many other things: identity, power, intimacy.

Q. How did you do the research for this book?

A. I spoke to a couple people to get an idea what a day in a life [of someone with ALS] might be like, how one gets out of bed, eats, etc. From there I did research on the Web and read a few books to get a sense of what was involved. I had to read up to get some sense of the basics, but at the same time I didn’t want research to dictate the story rather than characters dictating it.

Q. What did you learn while doing the research?

A. I became really interested in the issues of voice —literal voice, in this case — and just how one makes life work with that particular set of physical limitations. The issue of breathing and respirators was one I didn’t know much about. I read a book that had been written by a woman with ALS, and she wrote about having trouble breathing one day, but trying very hard not to call for help. She had a husband and young children, and up to that point she had been able to stay home and be in her own family life, and her fear was that if she called for help, she would be in the hospital and not in their lives in the same way.

Q. How did you put what you’d learned into the story?

A. I think I recall her saying she wasn’t strong enough, that she had had to call for help, and I had the idea that Kate might feel this way as well, but that Evan would disagree, [which] shifted their whole relationship, and shifted Bec’s role as well. It solidified what I already had begun to see in those relationships: how Evan and Kate could not agree on the acuteness of her situation and how to approach it, Bec’s uncertainty of her role, and the consequences of Bec’s tendency to refuse to think too far ahead. For example, Bec makes some promises but does not fully consider what they mean.

You’re Not You, by Michelle Wildgen, 288 pages, 2007, $14.00, Picador, (888) 330-8477,

Kathy Wechsler
Your rating: None Average: 5 (1 vote)
MDA cannot respond to questions asked in the comments field. For help with questions, contact your local MDA office or clinic or email See comment policy