- Hardcover: 288 pages
- Publisher: Rodale Books (May 23, 2017)
- Language: English
- ISBN-10: 1623367654
- ISBN-13: 978-1623367657
- Product Dimensions: 5.8 x 1.1 x 8.8 inches
- Shipping Weight: 1.2 pounds (View shipping rates and policies)
- Average Customer Review: 48 customer reviews
- Amazon Best Sellers Rank: #18,198 in Books (See Top 100 in Books)
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Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand Hardcover – May 23, 2017
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“Julie Rehmeyer's inspiring memoir of surviving the ravages of M.E/C.F.S casts much-needed light on what it's like to live with a poorly understood disease. Humorous, compassionate, and motivated throughout by curiosity, Through the Shadowlands will powerfully illuminate this murky realm for anyone wondering what it's like to suffer and survive.”
―Meghan O’Rourke, author of The Long Goodbye
“Julie Rehmeyer is both a real scientist and an award-winning science writer. Her book will have the power to change lives.”
―Dave Asprey, New York Times bestselling author, author of Head Strong, and producer of the film “Moldy”
“Only a brilliant science writer could possibly traverse the mysterious landscape of America’s most misunderstood affliction with such grace. From the politics of scientific research to the far reaches of alternative medicine; from the nitty gritty of molecules to the depths of raw emotion ― this is a riveting story that will change lives.”
―Joan Borysenko, New York Times bestselling author of Minding the Body, Mending the Mind
“Julie Rehmeyer’s self-taught journey through the murky world of mycotoxins, which she shares so eloquently in this book, has helped our whole clinical team change our protocols. With the help of the expert training of the American Academy of Environmental Medicine, we are now testing and treating people with mycotoxin poisoning. It is wonderful to see people getting better!”
―Nancy Klimas, Director of the Institute for Neuro Immune Medicine and Professor of Medicine at Nova Southeastern University
“It is a privilege to have the singular journey through the outback of contested medicine narrated by a science journalist with the nuance, rigor, deep respectability and reporting chops of Julie Rehmeyer.”
―Pamela Weintraub, author of Cure Unknown and commissioning editor at Aeon
"Science journalist Rehmeyer’s deeply personal illness memoir stands out for the lucidity of her self-analysis and pragmatism about managing a life turned upside down by chronic fatigue syndrome (CFS). She emerges as simultaneously a science journalist frustrated with established medicine’s dismissiveness, a patient open to the pseudoscientific approaches of non-traditional practitioners, and a desperate woman reaching out to suffering peers on the Internet for support and advice. This last avenue ultimately leads her to an extreme removal of mold from her environment, starting with a body-resetting solo expedition to Death Valley. Exploring ideas of dependence and self-sufficiency, Rehmeyer shows her illness through the lens of her personal relationships―with her strange and abusive mother, mentally ill first husband, mostly distant siblings, and two successive partners, the second of whom is supportive where the first one is not. In this way, she explores her illness’s psychological aspects while never giving up the idea that CFS has a real and profound physiological component. Rehmeyer’s frustrated but cautiously optimistic story will resonate with readers who value an intelligent, scientific approach to life but wonder what to do when there aren’t any good answers."
"Harrowing, raw and frequently inspiring... [Rehmeyer] writes as she has been forced to live: with great inner strength and determination." ―Washington Post
"A moving portrait of a person living expansively in the face of setbacks and limitations… she is introspective and reflective, open to new ideas and people, and she forges strong friendships with many people around her, including neighbors and fellow science writers. Since reading the book, I've found myself reflecting more on my own emotions and thinking about how to cultivate the kinds of relationships she has with family and friends. Through the Shadowlands is a gift, and I am grateful that Rehmeyer trusts us with this frank, intimate look into her life." ―Scientific American
About the Author
JULIE REHMEYER is an award-winning mathematics and science writer. She is a contributing editor to Discover Magazine, and has been published in the New York Times, Washington Post, Wired, Slate, Science News, and more. Her stories have been featured on The History Channel and NPR’s All Things Considered. She is the 2016 recipient of Ted Scripps Environmental Journalism Fellow at The University of Colorado, Boulder, and the Excellence in Statistical Reporting Award. She lives in Santa Fe, NM.
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Top customer reviews
Rehmeyer's account of the emotional devastation of grad school (she was studying mathematics at MIT before she, showing better sense than some of us, fled to New Mexico) will no doubt ring true for many academics, and, while most academics don't develop ME/CFS (although the number is probably higher than we currently know), the problem of mental and physical illnesses plaguing academics from the undergraduate level to full professors is starting to receive more and more press. While for me and for other academics this book may have some interest because of that angle, it is not, however, a story of academia gone wrong, as Rehmeyer goes from institutionally-affiliated academic to science writer fairly early on. She chronicles how she keeps thinking that, while she was haunted by the worry that something had gone fundamentally wrong with her body, it was all too easy, as she dealt with job and relationship worries, to assume that the problem was "just stress," something that her doctors encouraged her to think. If she could just clear this next hurdle and get her life in order, everything would be fine.
Except that it wasn't. Eventually Rehmeyer became so ill she could barely walk. Given a diagnosis of chronic fatigue syndrome by the neurologist she consulted, she plunged into the maddening maelstrom of ME/CFS, where it seems like everyone, including most of the doctors who treat it, practices junk science. Is it a psychosomatic illness, the result of laziness and fearfulness, as many doctors characterized it? Rehmeyer's own experiences, like those of the majority of ME/CFS patients, strongly contradicted that. She writes about how she indeed assumed that she had merely gotten out of shape and unused to exercise, and dutifully attempted to build back up her strength, only for her gains to crumble away, so that she would end up even sicker than before. The treatments of the ME/CFS specialists she visited, although they did take it seriously as a physical illness, did little good either: supplements, special diets, and other treatments would occasionally bring about a brief improvement, only for her to collapse again. Interestingly, one of the things that brought about a fairly long-lasting remission early on in the illness was a trip abroad--I say interesting, because I experienced the same thing myself, although I went to Finland, while Rehmeyer went to South Africa. This certainly argues for an environmental cause, at least as part of the cocktail of triggers, for the illness; I don't know if anyone's researched the effects of leaving the country for ME/CFS patients, but I personally found that fascinating.
Anyway, nothing Rehmeyer did, not even after she consulted with some of the top specialists in the world, provided any long-term improvement. This led to a crisis, not just of physical health, but of her thinking; as she said:
"It was a hard thing for me to absorb: Doctors weren't going to help.
"It wasn't just that there was no magic pill to fix me. Plenty of other illnesses couldn't be fixed with magic pills--but at least they had legitimate specialists who would try to help. Chronic fatigue syndrome, it seemed, didn't count as a 'real' illness. The problem was less that people explicitly asserted that CFS was psychosomatic--my friends never said that, and only that one doctor I saw had discussed the possibility--and more that it lacked all the trappings of legitimacy, with proper doctors and blood tests and researchers and conferences and solid information on Web sites. If you told people you had cancer or multiple sclerosis or lupus, you got lots of sympathy. If you said you had chronic fatigue syndrome, you often heard, 'Oh yeah, I'm tired all the time too.'"
This led, through circuitous paths, to Rehmeyer turning away from "real" science, of which there is precious little on ME/CFS, and deciding to try out a hypothesis she originally considered to be crazy: that her problems were caused by exposure to toxic mold. The second half of the book is the story of her risky journey into Death Valley to attempt a "mold detox," followed by her growing realization that indeed, mold was the problem, and her subsequent attempts to avoid it.
This was the part of the book I was the most interested in before reading it, and the most skeptical about. I occasionally hear complaints about mold, and I'm always like, "Yeah, yeah, whatever" (eye roll). However, Rehmeyer's story is certainly a compelling argument that mold can indeed cause serious health problems, and that for at least some patients, it is a major factor in their illness. Which, as I eye the hole in my ceiling caused by the latest deluge here in the rainy Southeast, makes me very nervous. I'm not sure that I'm quite ready to try a mold detox, especially since it sounds like once you do, you have to be ready to get rid of all your possessions and flee to the desert, but reading this book has made me take the idea much more seriously.
This is not just a how-to manual for "treating your own CFS," though--in fact, it's not really that at all. It's much more an intellectual and spiritual journey through a little-understood, although not actually that rare, illness, as Rehmeyer teases out the problems with so many of the studies (she spends a while eviscerating the psychosomatic arguments, and in particular the PACE trials), and also contemplates the lessons she learns from being so ill for so long. To end with a few of her words:
"So much of the pain I experienced then was a result of outrage. I insisted that my suffering had to make sense, that I must be able to control it, that it must be an outcome of a mistake I'd made and would vanish once I corrected it. My rage grew out of my conviction that I had power in the situation, a belief that looked pretty silly now that I no longer had the ability to even lift my head. At this point, suffering felt like just one more experience to be attuned to, as valuable and welcome as joy or silliness or excitement, if far less fun. And I found that when I stopped resisting my suffering, I had more room for other things."
Into the valley of the shadow of death… she walked and many times crawled because that’s all she could do. Every imaginable trick in the book was thrown at her as she tried to navigate in the darkness. Yet despite all of the obstacles, she kept focused, believing that she could figure out whatever it was that stood between her and the better life she knew was waiting. She kept believing that she could find ways to make it through.
Not setting out to be a hero, Julie Rehmeyer, in the end is a voice for the voiceless, a single hand held up to stop the steamroller of established medical research created by poor scientific practice. Like Rebecca Skloot who brought to life the hidden story of Henrietta Lacks, Rehmeyer brings us the hidden story of those whose physical symptoms have been discounted as manifestations of a psychological disorder.
Her feisty attitude in the face of misdiagnosis based on ill-designed studies is laudable. “Let’s give you a horrendous illness, deny you decent medical care and disability payments, have your friends and family tell you you’re crazy, and then see how your mental health fares!”
Yes, this is written by a science writer, but it reads more like the fine work of John McPhee and Lewis Thomas. Well-worth your time.
Julie is also very wise, and her wisdom is woven throughout her incredible book. It is one of those books that will be like having a friend on your bookshelf or in your Kindle.
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Julie takes the reader into the life of a person with the illness ME/CFS.Read more