When a child has something as minor as a flu or a sprained ankle, it can feel impossible to do even the most basic tasks – answering emails, unloading the dishwasher – until your kid feels better. Imagine, then, the will-robbing inertia of having a child with a chronic illness, or a life-threatening allergy. Just guiding them through the day in relative safety and comfort can become a full-time job.
Now imagine mustering the energy and strength to confront the wall of medical wisdom telling you your kid will not get better; finding the confidence, or faith, or inspired insanity to say to the entire medical establishment: “you’re wrong.” This is just what several mothers did in Susannah Meadows’ book The Other Side of Impossible. When doctors told these women conventional medicine couldn’t do anything for their chronically ill or severely allergic children (or, in one case, her own illness), they refused to listen. They tried alternative therapies, some extremely esoteric, none of them scientifically proven. And in the majority of the cases, they worked.
Meadows got interested in alternative medicine and the people desperate or determined enough to try it when her own son, Shepherd, was diagnosed with juvenile arthritis. The conventional treatment – a form of chemotherapy – was toxic, exhausted Shepherd, and wasn’t a cure. So Meadows explored other options, radically overhauling Shepherd’s diet and eventually taking him to a self-described “healer” who taught him mantras and visualization techniques. Five years later, Shepherd is a happy, healthy boy who has completely recovered from his arthritis. The outcomes of the other families Meadows writes about in her book are more mixed, but her message – that when conventional medicine fails, a combination of persistence, faith, and willingness to try anything can make the literal difference between life and death – is compellingly persuasive. She spoke to Signature about balancing being a journalist, a mother, and a crusader for her son.
SIGNATURE READS: This book began as an article for the New York Times Magazine about your son’s recovery from juvenile arthritis, which was the result of a restricted diet eliminating gluten, dairy, and many other foods. You write at the end of your book that you were “not expecting a second act – that he would one day eat gluten and dairy again.” What were the challenges of writing this book while your son’s recovery was still so new, and continuing to evolve? Did you feel like you were telling a story to which you didn’t know the ending?
SUSANNAH MEADOWS: I feel I should mention that while Shepherd did recover after we changed his diet, and there are good reasons to believe that the diet made the difference, there’s no way to know for sure what made him better. To answer your question, I definitely did not know the ending to our story when I started the book! In fact, some of the other stories turned out differently than I thought they would. When you write about peoples’ lives over the course of three years, it turns out that things happen. One of the most exciting moments while I was working on the book was when one of the children I was writing about made an unexpected recovery. I’d already written her chapter. I was able to add a happy postscript.
SIG: Were you surprised by the response to your Times article? What does it say about conventional medicine that so many people seem desperate for alternatives?
SM: There were plenty of people who had a negative response—those were the ones I expected! I knew that no matter how clear I was that there was no proof that the protocol we tried with Shepherd would help other people, there would be those who would object to my talking about anecdotal evidence. The reason I thought our story was worth sharing was that I knew that there was at least a chance that the diet experiment we tried with Shepherd was the reason he recovered. And because it wasn’t risky, I didn’t feel I had the choice not to get the information out to other parents. The one response that did surprise me was from two prominent rheumatologists. They said that our son had suffered because his treatment was delayed, which was completely incorrect. The article stated clearly that we started him on medication the day of his diagnosis. It struck me as incredible—and ironic—that they were complaining about a lack of evidence for diet changes when they got their own facts wrong. The best responses were from people who wrote me—and continue to write me—to tell me that they tried what we tried and found recovery.
I agree that people are desperate for answers, not necessarily as alternatives to medicine, but when they’ve tapped out what conventional medicine has to offer. What are you supposed to do then? Just accept that you’re sick or that your child is sick? Certainly when conventional medicine did little to help my son’s arthritis, and, at the same time, made him feel sick, I couldn’t accept that that was going to be his life. And, by the way, I think doctors are frustrated too that we don’t have enough science at this point to know how to help everybody.
SIG: You are a journalist, and trained to approach stories with a certain amount of skepticism. How did you overcome that skepticism both for your own son, Shepherd, as well as in talking to other people who had experienced miraculous results by altering their diets?
SM: In my case, as in others, I think it was pure desperation. As a journalist, yes, I tend to be skeptical. And I certainly used to dismiss therapies that lacked clinical evidence that they worked. But as a desperate mother, I didn’t have that luxury. I could have called my book “The Upside of Desperation.” Because it opened my mind to other possibilities, however unproven. That said, I don’t think I lost my skepticism. I was very clear-eyed embarking on a diet experiment with my son. I considered it a longshot that it would work, but because it wasn’t risky, I felt I couldn’t not try. In telling the stories of other families who took on other illnesses and found luck on their own, I was careful to be forthright about what was known and what wasn’t. I certainly didn’t want to give anyone false hope. At the same time, I dug into the literature to see if there was any science that could explain why these people, including Shepherd, recovered. I was surprised to find quite a bit of compelling research.
SIG: One of the things I really appreciated about your book was how compassionate you were towards everyone you write about, while at the same time acknowledging that some of their ideas might seem like hocus pocus to the unconverted. In writing the book, how did you balance the viewpoint of the average reader, who might not have experience with alternative therapies, with your own growing belief in their efficacy?
SM: One of the advantages I had writing about other people who’d tried all sorts of things to get better, was that I’d been through it myself. I’d lived all the same doubts and fears. But I’m still a journalist, so I shared the skeptical perspective of the uninitiated. My belief that a diet can have an impact on autoimmune conditions, for example, did grow, but it was from talking to scientists about the emerging evidence.
SIG: Which story was the most difficult to tell? Why?
SM: My own family’s, by far. I was extremely uncomfortable writing about myself and our experience. It’s private! I would have liked not to, I just didn’t feel I had that option if someone else might be helped. My husband, who’s a writer, and I went back and forth: “You do it.” “No, you do it.” “No, you do it.” because I really didn’t want to. In the end, I recognized that because I was a reporter and he was a novelist, it made more sense for me to do. Amy Thieringer’s story was also incredibly challenging. She’s the one who has developed a therapy to treat children with severe food allergies. But some of the things she does don’t relate to anything we know about biology. There is not an explanation. But her anecdotal results are very compelling. So I wrote and rewrote parts of her chapter many times to try to find the write language and tone for how to deal with the material.
SIG: You write about the stress chronic illness and allergies can create for families, and how several of the marriages of your subjects suffered. How did it impact you to be writing about your own family as well as managing Shepherd’s condition? How did he feel about being a subject in your book?
SM: I only wrote about our family after Shepherd recovered from arthritis. I was such a basket case while he was suffering that I was capable of very little beyond taking care of him, having him sit on my lap for the entire day. He was really pleased to be in The New York Times—he asked to fetch the paper from our stoop the morning his story came out in the magazine. When the book came out, he took it in to school for show and tell. At the same time, he’s mindful that his twin, Beau, feels a little left out. It was Shepherd’s idea for me to dedicate to the book to Beau.
SIG: All of the stories you tell are about women, either mothers searching for treatments for their children, or women trying to heal themselves. Do you think there is an inherent difference in the way men and women approach disease and health? Did you talk about this with Amy Thieringer or any of the other healers you write about?
SM: I was interested in this too, and reached out to some experts. One psychologist said that while it was impossible to draw conclusions from such a small sample, one reason that everyone’s a woman in my book could be that women still do most of the childcare and are also socialized to be more comfortable asking for help. But resilience and persistence are not particular to women.
SIG: Many of the mothers you write about follow a modified version of the diets they try with their children. You write a lot about what Shepherd eats, but I’m curious how closely you followed his restricted diet when he wasn’t eating gluten or dairy, and if you noticed any changes in yourself, and also what your diet is like now that he can eat most foods again.
SM: As a family we adopted Shepherd’s gluten-free, dairy-free diet at home. I remember, though, in the middle of it, our friends had my husband and me over. They said, “We need to get some bread and cheese in you people. “ We ate these amazing grilled cheeses and had such stomachaches afterward! The funny thing is that now that Shepherd eats everything again, my husband and I stay off gluten! We both feel better. The bigger shift in all of our diets has been toward eating many more vegetables. After spending time with Terry Wahls, the woman in the book with MS, it would have been impossible not to make that change. She was using a wheelchair, and now, after adopting a diet of 12 cups a day of berries and vegetables, she’s riding a bike. Plus there’s a lot of compelling research that supports the benefits of a high fiber diet for all of us.
SIG: I imagine one of the most controversial aspects of your book is the idea that life-threatening food allergies can be overcome through a combination of desensitization, visualization, mantras, acupressure, and affirmations – that the mind can convince the body not to have an anaphylactic reaction to foods such as peanuts, dairy, or wheat. What sort of response have you gotten from the conventional medical establishment to this approach? Why do you think conventional medicine tends to be so hostile towards alternative therapies?
SM: While I was working on the book, I reached out to prominent allergy researchers to get their thoughts about the therapy you describe above. I was surprised that they were not dismissive at all. They were all intrigued. One of them even said that he believed that the psychological component of an allergic reaction was clearly part of the story. I think the hostility you refer to is for therapies that haven’t been proven to work that are used in place of therapies that are supported by evidence. But western medicine has nothing to offer people with severe food allergies, or many of the other diseases in my book, so the things that people tried aren’t an alternative to anything. The researchers I spoke to also understood that new ideas can often seem weird before they’re proven to work and become normal.
SIG: Do you have any updates on any of the people you write about? Will you continue to follow their stories for a follow-up article or book?
SM: Yes! The little girl with epilepsy, whose story had the unexpected happy ending, continues to do well. When I finished the book, she’d just had the surgery to remove the tumor that was thought to be causing her seizures. It’s now a year later, and she hasn’t had a single seizure, and she’s thriving. Also, you may remember that Jamie Stelter, of chapter 8 fame, was trying to get her rheumatoid arthritis under control so she could focus on getting pregnant. Well, her baby is due next week, I’m happy to report. And, yes, I will keep up with everybody because I will always care about what happens to them, but I’m ready to write about something totally different.