Rehmeyer: Through the Shadowlands

Shadowlands cover

Shadowlands cover

THROUGH THE SHADOWLANDS:
A SCIENCE WRITER’S ODYSSEY INTO
AN ILLNESS SCIENCE DOESN’T UNDERSTAND

Julie Rehmeyer
Rodale Books, May 23, 2017, $25.99
ISBN-10: 1623367654; ISBN-13: 978-1623367657

Rehmeyer reports:

When chronic fatigue syndrome first flattened me, I was shocked to find that doctors were useless. Authoritative websites, including from the CDC and Mayo Clinic, offered not just scanty but false information. The research literature was thin as tissue paper. And most journalism about chronic fatigue syndrome was sneering, trivializing, or just plain wrong.

Soon, I knew I’d have to write about the disease in some form. The need was so obvious!

Julie Rehmeyer

Julie Rehmeyer

I first imagined a book that would offer a broad perspective on the illness as a whole, grounded in my personal experience, as Andrew Solomon’s Noonday Demon did for depression. But as the years went on, my own experiences with the illness grew wilder and more amazing, like a fantastically-flowered vine bursting beyond the boundaries I’d imagined for the personal aspects of the book.

Also, I began feeling a gulf between my perspective and those of my science-minded friends. Science pretty much abandoned me and my fellow patients, for decades. Having this illness feels like falling off the edge of the earth, and nothing looks the same afterward. To convey the experience of this illness, useful information wasn’t enough: I needed to create an emotional shift in my readers. And nothing beats story for that.

So the book became a full-on memoir, bringing readers inside my heart and mind as I lay in bed for month after month, literally paralyzed, with no idea what to do. They feel the desperation that drove me to try a treatment that many scientists sneered at — taking extreme measures to avoid mold — and the shock and joy when it worked. And, hopefully, they emerge with a taste of the profound shift in perspective that has made me a better science journalist and a happier person, whether sick or well.

In 2014, I began working on a book proposal, and in February 2015, I wrote an op-ed for the New York Times about the disease. An agent, David Doerrer, asked if I’d like to write a book. We sold it to Rodale five months later, and I completed the manuscript ten months after that.

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