Elaine McArdle, a UU World senior editor, is the co-author of Barbara K. Lipska’s The Neuroscientist Who Lost Her Mind: My Tale of Madness and Recovery (Houghton Mifflin Harcourt, 2018).
The book explores the science of mental illness, cancer, and immunotherapy while telling the personal story of Lipska, a top scientist at the National Institute of Mental Health who began experiencing symptoms of dementia and schizophrenia as melanoma spread into her brain. This Q&A with McArdle, a journalist who has taught memoir writing and the art of the interview, has been condensed and edited. An abridged version appears in the Summer 2018 issue of the magazine.
- How did you first learn about Lipska’s story of “losing her mind” and then, after a successful but experimental treatment, regaining it?
- I’ve known her son-in-law, a journalist, and her daughter for about twenty years. I had met Barbara a couple of times but didn’t know her really. One morning I was reading this fascinating article in the New York Times by Barbara [about her symptoms and the treatment that helped her], and thought, “That’s my friend’s mother!” The next day he emailed me that she was getting this unbelievable response: book deals, movie treatments. He said, “Would you talk with her about co-writing a book?” She was so likable and the story was so compelling, about someone becoming mentally ill and then emerging from it and being able to talk about it, we became partners pretty quickly.
- The thing that’s unusual about this collaboration is that no one knew how long she had. We had a real deadline hanging over us. She had a four- to seven-month prognosis; when she contacted me she had already lived fifteen months.
- What was the writing process like?
- She likes to write, and at the same time I would be writing. I would interview her, interview her family, interview her colleagues and other mental health experts, and then we’d exchange sections.
- When you spend so much time with someone and know so much about their life, you become naturally very close to them. We were talking pretty much every night and weekend, and I spent time with her in her home several times, and we were together in New York several times. She was very honest with me about her fears of dying in a way that she didn’t feel she could be with her family, who had already been with her through two cancer treatments.
- And now we’re in the middle of this incredible response to her story. For both of us the letters people are sending is the best part of this whole thing.
- How on earth did you find the time to tackle a project like this? It’s not like the last two years haven’t also been demanding for you as a UU World reporter!
- Her health was always a concern, and we both had full-time jobs. We had to be very efficient. Our deadline was the end of June. I had General Assembly to go to, so I said the deadline was actually June 15. When we turned it in, our agent said, “Never in history has anyone turned in a book two weeks ahead of time!” But also, of course, starting in March there was a lot of activity at the UUA, requiring a lot of weekends. I just worked all the time. I would not recommend that to anyone.
- Some disability-rights activists bristle at terms like “descended into madness” or “lost her mind.” What were your conversations about language like that?
- We did have those conversations, and with some experts in mental illness who didn’t like words like “madness.” Barbara is a scientist and likes precision, but we decided there is a place for it with an educated audience. We use it infrequently, as a poetic and historical term, to make it more human, instead of using “mental illness” over and over again. Hopefully we were thoughtful about when we did use it.
- What do you hope readers will take away from this book?
- As Barbara herself says, she had studied the brain and mental illness for thirty years. But in experiencing it, she realized she did not understand it. I live in Portland, Oregon, a city with lots of people with untreated mental illness on the streets. I find I’m now far more compassionate for the tremendous suffering they’re enduring. Practically, we hope for more resources for mental illness. And we hope people who have mental illness and/or cancer can realize that they’re not alone. This wonderful woman understands on a personal level what they’re going through.