“The Mystery Illness that Plagued This Writer for Years”

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The Story

“The Mystery Illness that Plagued This Writer for Years”
by Julie Rehmeyer
O Magazine, June 2017

The Pitch

I felt like I was going to the desert to die.

The feeling didn’t make much sense—I fully expected to be breathing after the trip. But I couldn’t imagine anything that might follow it. I’d reached the end of the road. I am done.

For more than a decade, I’d met my obligations and kept my dreams alive in spite of the chronic fatigue syndrome that sometimes flattened me me. But now, I was so sick I frequently couldn’t turn over in bed. At times, answering a simple question—say, what did I want for lunch—literally hurt my brain, leaving me whimpering. While grocery shopping, I might suddenly become semi-paralyzed, and I’d have to abandon my grocery cart and ask a stranger for help to stagger back to my car. And after going to the top specialists in the world, I had run out of standard medical options.

The truth was that I was too sick to even take care of myself, much less keep building a career and a relationship. I was 39, I was living alone, and I was running out of money. I couldn’t imagine what was going to happen to me. Consignment to a nursing home?

So when I met some fellow patients on the internet who said they had improved enormously by taking extreme measures to avoid mold, I was desperate enough to listen. I’d never had any obvious reaction to mold in the past, but they predicted that if I spent two weeks in the desert with none of my own belongings, my body would clear itself of mold, and then when I returned home, I’d react clearly and strongly. Then I’d know that mold was doing me in, and by avoiding it, I could get better.

I could barely contain my skepticism over what struck me as wacky pseudoscience. I was a science writer, and an MIT-trained mathematician. As far as I could tell, science didn’t support the idea that mold could cause symptoms like mine. But I had run out of reasonable, rational, science-backed options. I only had unreasonable ones left.

Plus, I was tired of rotting in bed at home, with only the remotest hope of getting better. I was on a slight upswing, so maybe I could just pull it off. And having an adventure even when I was so damn sick at least made me feel like me. But what if I got paralyzed in the middle of the desert, with no one to help for miles around?

These were the questions I asked myself before I set off on a two-week journey that changed my life. My book about the experience will be published by Rodale on May 23, and I’d love to write a short essay about it for O Magazine. I’m a fellow Binder, a contributing editor for Discover and a freelance math and science writer who has written for the New York Times, Washington Post, Wired, Slate, Aeon, and many other publications.

I look forward to hearing from you.

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