Through the Shadowlands

Julie Rehmeyer felt like she was going to the desert to die.

Julie fully expected to be breathing at the end of the trip—but driving into Death Valley felt like giving up, surrendering. She’d spent years battling a mysterious illness so extreme that she often couldn’t turn over in her bed. The top specialists in the world were powerless to help, and research on her disease, chronic fatigue syndrome, was at a near standstill.

Having exhausted the plausible ideas, Julie turned to an implausible one. Going against both her instincts and her training as a science journalist and mathematician, she followed the advice of strangers she’d met on the Internet. Their theory—that mold in her home and possessions was making her sick—struck her as wacky pseudoscience. But they had recovered from chronic fatigue syndrome as severe as hers.

To test the theory that toxic mold was making her sick, Julie drove into the desert alone, leaving behind everything she owned. She wasn’t even certain she was well enough to take care of herself once she was there. She felt stripped not only of the life she’d known, but any future she could imagine.

With only her scientific savvy, investigative journalism skills, and dog, Frances, to rely on, Julie carved out her own 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, she describes how her illness transformed her understanding of science, medicine, and spirituality. Through the Shadowlands brings scientific authority to a misunderstood disease and spins an incredible and compelling story of tenacity, resourcefulness, acceptance, and love.“Harrowing, raw and frequently inspiring . . . [Rehmeyer] writes as she has been forced to live: with great inner strength and determination.”—The Washington Post

“A moving portrait of a person living expansively in the face of setbacks and limitations . . . Since reading the book, I've found myself reflecting more on my own emotions and thinking about how to cultivate the kinds of relationships [Julie Rehmeyer] 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

“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 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

“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.”—Publishers WeeklyJULIE 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.PROLOGUE

February 2012

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 tent pole 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 to turn over in bed.

Now I was spending all my strength wrestling 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.

On top of all that, I didn’t even much believe in the mission that brought me to the desert in the first place. I had come to Death Valley on the theory that I needed to get clear of mold—from moldy buildings, from mold in the outside air, from mold in my belongings. Strangers on the Internet had told me there was a good chance that mold had triggered my illness and that by strictly avoiding it, I would eventually recover. I had never had any obvious reaction to mold in the past, but my Internet advisors told me that when I returned home after two weeks in the desert, the mold in my own house and belongings would likely make me dramatically sick. And then, at last, I would know what was doing me in.

This whole thing is probably a crock of shit, I’d thought, but at least it’ll make a good story.

The truth was, though, that I was desperate to get better. Over the previous year, my health had deteriorated so much that I could barely work, often couldn’t walk, couldn’t even take care of myself. I had gone to the top specialists in the world, and I’d pretty much run out of medical options. I would soon run out of money, too, and I had little family to turn to. I was 39, and I had no idea what was going to happen to me. Consignment to a nursing home?

Without that level of desperation, I couldn’t have brought myself to pursue a theory that so many scientists sneered at. I was a science writer and a mathematician, and science was my primary lens for viewing the world. Coming to Death Valley had unmoored me from both my physical and intellectual homes.

The wind tried again to rip the tent away as the last pole snicked into its grommet. Thank god, I thought, clutching the tent harder. I allowed myself only a moment to catch my breath, not wanting to let my exhaustion undo me. Then I began pounding stakes into the ground.

My two-year-old puppy, Frances, bounded up to me, her brown nose covered in fine tan sand, and then she ran off in pursuit of a fly. I smiled—she, clearly, wasn’t a bit worried about the tent or the wind. I watched her leap and snap at the invisible insect. At least I’m not completely alone, I thought.

I plodded 50 feet to the car to gather essentials before I ran out of energy. As I reached toward the trunk, I stopped, arrested by the valley that surrounded me. Bands of red and blue and yellow and pink rippled through the mountains facing me, the peaks’ geological story written on their naked flanks for all to read. The Panamint Mountains at my back were ever so slowly listing eastward like a great ship keeling over, the summits twisting higher as the valley floor sank. Salt flats shone white on the valley floor, the residue of millennia of rain that had run off the mountains and evaporated, carrying a load of salt and minerals to join the dried-up remains of Pleistocene lakes. Except for a few tiny cars inching along the road ten miles away, I saw no sign of a human being.

I felt myself expand into this great space, this emptiness. Despite the wind’s immense swirl of energy, the land felt quiet, still, impassive. Everything fell away from me—my body, my pain and exhaustion, my fear, my strange experiment—and was replaced with a huge and ancient stillness. All the time, I thought, this place was here, whether I was pinned to my bed or bounding up a mountain trail. As I poured out into the valley, I felt the valley pouring into me, its enormous spaciousness filling my chest.

The wind buffeted me, and I staggered. I returned to my task, gathering a couple days’ worth of food to take to the tent in case I couldn’t make it back to the car the next day. Then I returned for my sleeping bag, pad, and Frances’s blanket. All were new to me—one of the requirements of this experiment was that I leave all my own belongings behind, since everything I owned, on this theory, was contaminated with mold. The sleeping bag and pad I had borrowed from a friend, and the cheap blanket came from Target. I could only hope they were mold-free.

After the weeks of slow preparation, I had made it. It was only 6 p.m., but I was done for. I called Frances into the tent and curled up in my sleeping bag.

Before I left for Death Valley, I’d told friends that I felt like I was going to the desert to die. I fully expected to be breathing at the end of the trip, but I couldn’t keep everything together as I had been doing for years, holding on to my responsibilities and dreams in spite of the barriers my illness threw in my path. Whether the experiment worked or didn’t, the life I had lived was over. I was staring into a cavernous darkness, beyond any imagined future I could invent. I wrapped my arms around my dog and closed my eyes. Okay, I thought. Whatever is next, okay.