Q&A: A Mother Takes on Her Son's "Impossible" Disease -- and Wins

Susannah Meadows just published her first book, but she’s been a writer for a long time. I remember receiving letters from her more than 20 years ago, during our respective college semesters abroad (from Duke University) and marveling at her ability to capture the seesawing joy and anxiety that defines young adulthood. A letter from Susannah was always a treat – a few folded pieces of paper that captured her generosity of spirit and sharp intellect.

These days, Susannah and I talk on the phone far more often than we write; the schedules and responsibilities of (very!) early middle age do not easily lend themselves to languorous musings on the meaning of life.

And Susannah has been busy -- juggling a journalism career, twin boys, and her marriage to fellow writer Darin Strauss. In 2013, the New York Times magazine showcased her story, “The Boy With a Thorn in His Joints,” about her son Shepherd’s diagnosis of juvenile rheumatoid arthritis, and the family’s (ultimately successful) efforts to combat the disease with a combination of medical and alternative treatments. To say that the article made a splash would be a spectacular understatement.

A book deal soon followed, and this spring, Random House published Susannah’s debut book, The Other Side of Impossible. Shepherd’s story is a prominent part of the narrative.

I’ll just cut to the chase here and tell you that The Other Side of Impossible is a wonder: A meticulously researched book that’s also loaded with hope and humor. The book profiles families who have faced devastating diagnoses, diseases with no known cure or even effective treatments -- who push beyond medical “possibility” to build their own therapies, often with staggering results.  Gorgeously written and unflinchingly honest, it belongs on every family’s bookshelf.

I caught up with Susannah recently, and asked her a few questions about her experience as a first-time author, the emotional impact of telling personal stories, and her failings as a self-promotion machine.  -- Jessica Reaves

Q: First, congratulations on your book! Has it been a whirlwind? Are you exhausted? Has the book release/publication experience been what you expected, or have there been surprises?

A: Thank you! So far, the experience of publishing a book has been almost entirely different from what I expected. I spent so much time worrying about how it might be negatively reviewed that I hadn't thought about the nice words that might come my way. I've been moved by reviews that readers have posted online. They've been really thoughtful and personal. One woman on Amazon wrote that she read the book in one sitting, got up to feed her service dog, then sat down to read it again. There was also the review with the headline, "Garbage." So, a little less thoughtful, but it did make me laugh.

Here's the best example of the unexpected: I was invited to talk about the book on Fox & Friends. When I was in the green room, waiting to go on, I was chatting with a political consultant. He was the third person there to tell me that the president could very well be watching. Think of how weird that is. The consultant told me to say, "Mr. Trump, if you're watching, this book is important to the healthcare debate." But I just couldn't do it. I am not a natural saleswoman. Luckily the two women who interviewed me sold the book better than I ever could have. They were incredibly generous. The ultimate surprise: within a couple hours the book shot up to #3 on Amazon.

Q: I'm really curious about how you approached the subject matter, because you're a seasoned journalist, but you're also a mom with a personal stake in these stories, and I can imagine there were times when objectivity wasn't necessarily possible -- or even optimal. You write, in the book, about taking on these stories first as a parent, and then as a journalist. Can you talk a bit about the emotional vs. intellectual process of writing the book? 

A: I was extremely uncomfortable telling my family's story. When my husband was working on his memoir years earlier, I'd asked him if it would be at all possible for him to leave me out of it entirely--not even mention my existence. But when our son, Shepherd, unexpectedly recovered from arthritis, and we knew it could have been from the experimental diet change we tried, we felt we didn't have a choice not to share the information with other parents. So I wrote our story out of a sense of obligation. Then when I started hearing about all these other people who'd taken on impossible illnesses and found ways to get better on their own, I reverted to my journalist self. Their stories were incredible--and I couldn't wait to tell them. But writing these women's stories felt different from anything else I'd ever done. We knew what the other had been through so there was a connection there from the start. For example, when I flew out to San Francisco to meet one of the families I was writing about, the mom opened the door and said, "Can I hug you?" I had a moment of wondering if it would be okay. But of course it was, and she did. I don't think that having a personal stake affected my objectivity. I think it made me work extra hard to make sure that readers would understand the people I wrote about even if they disagreed with their choices. Having covered a lot of crime and politics, I wasn't used to feeling inspired by the people I wrote about!

Q: Your son Shepherd's story features prominently in the book, and I think it's so lovely that you dedicated the book itself to your other son, Shepherd's twin, Beau. How aware are the boys of the book? Have they had any notable response to it, or the publicity surrounding it? Or are they just like, "Oh, that's what Mom does during the day. She writes this book."

A: Their dad and their aunt write books, so it’s not such a big deal to them that I’ve written one now too. But Shepherd did ask to take a finished copy in to his class for show and tell. He read the last paragraph, which is about him, aloud to the other students. He’s also offered a review: “The book is wonderful, even though I haven’t read it.” I’ll take it!

Q: While your book is about families and science and taking a leap of faith, it's also very much about women. Because in the stories you tell, it's the women -- single, married, mothers -- who pushed back against what was considered "possible." Do you think there is something inherently female about the kind of determination you profile in your book? To put it another way, what do these women have in common that compelled them to take matters into their own hands, even when things looked very bleak?

A: We’re better? I’m kidding. But I wondered the same thing, and a psychologist told me that persistence was not particular to women. Plus, we can’t draw conclusions from such a small sample. So what made them so determined? I thought it was interesting that almost everyone I wrote about in the book had overcome difficult circumstances earlier in life. There’s some science to support the idea that that kind of experience may influence how helpless or not you’ll act the next time things get tough. It's also common sense. 

Q: You've been traveling to talk about and promote the book. What has the audience response been like? I imagine people at the book events and signings want to ask you all kinds of questions about bacteria and yeast and gluten -- and maybe fecal transplants. Have you had any notable exchanges with would-be readers?

A: People have been lovely. They have some questions, but mostly those who come up to talk want to tell me their own stories. Because illness can be so isolating, I think there’s some comfort in knowing the experience is shared. Probably the most notable exchange was when one guy told me he liked eating books. I took it as a complement. Plus, he’d already paid for his copy. One of my kids’ favorite books is “The Incredible Book-Eating Boy.” I couldn’t wait to tell them that the boy was real and he lived in Temecula.

Jessica Reaves, who was a journalist at Time Magazine and the Chicago Tribune Magazine, is a writer and editor based in Denver, Colorado.