Science journalist Julie Rehmeyer was so sick she sometimes couldn't turn over in bed. The top specialists in the world were powerless to help, and scientific research on her disease was at a near standstill. She was running out of money. And she was all alone, with no one to care for her.
Having exhausted the plausible ideas, Rehmeyer turned to an implausible one. She followed the advice of strangers she'd met on the Internet. They struck her as crazy — but they had recovered from myalgic encephalomyelitis as severe as hers. Leaving behind everything she owned, she drove into the desert, testing the theory that mold in her home and belongings was making her sick. Stripped of the life she'd known and the future she'd imagined, Rehmeyer felt as though she were going to the desert to die.
But she didn't die. She used her scientific savvy and investigative journalism skills to find a path to wellness — and uncovered how shocking scientific neglect and misconduct had forced her, and millions of others, to go it alone. In stunning prose, Rehmeyer describes how her illness transformed her understanding of science, medicine and spirituality.
From the prologue
The tent was possessed. Death Valley's wind breathed a wicked life into it, whipping it into a writhing demon intent on freeing itself from my grasp and flying off on some maniacal mission. Determined to put it up, I engulfed as much of the tent in my arms as I could, stomped on it with both feet, tugged on the strip of webbing holding a grommet, and strained to bend the tip of the tentpole toward the hole. I howled with effort and the sound tore away on the wind, just as the tent so wanted to.
I knew I was breaking my own cardinal rule: Stop When You're Tired. That rule had burned itself into my brain over the dozen years since I'd first developed the symptoms of chronic fatigue syndrome, the illness I had come to the desert attempting to outwit. Even mild exertion could leave me nearly paralyzed the next day, sometimes unable even to turn over in bed.
Now I was spending all my strength to wrestle with this nylon and fiberglass fiend. Before I left home, I'd made sure I was capable of setting up this borrowed hurricane-grade tent, but I hadn't counted on a hurricane-grade wind. I was miles up a jeep trail off a long dirt road in the middle of the godforsaken desert, alone except for my dog. Should I wake up crippled and call for help, my shouts would shred in the wind long before they reached a human ear.
Continue reading →Reviews
"Harrowing, raw and frequently inspiring… She writes as she has been forced to live: with great inner strength and determination." — Washington Post
"Full of verve and curiosity… Eloquent." — New Yorker
"Julie Rehmeyer's inspiring memoir of surviving the ravages of ME/CFS 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'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." — Nancy Klimas, Director of the Institute for Neuro Immune Medicine, 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
Interviews
Radio
- Radio Cafe
- Undiscovered
- Ronald Hoffman's Intelligent Medicine Podcast, Part 1 and Part 2
Related Press
- O Magazine — essay based on the book
- STAT News — article about changes in CDC treatment recommendations
- STAT News — article about PACE
- Science of Us on PACE