For over a decade, Aptos-based writer Tracie White has written award-winning profiles about Stanford science researchers. One of those stories, about the race for a cure to a mysterious illness, became the seed of White’s new book The Puzzle Solver, created with legendary geneticist Ronald W. David for Hachette Books.
Written in a highly accessible, precise—yet often emotional—style, White’s book documents a father’s quest to understand what was afflicting his adult son, Whitney Dafoe, whose complex set of symptoms had been dismissed by the national medical community as a variety of psychosomatic symptoms often bundled under the name “chronic fatigue syndrome.” White’s absorbing narrative reads like a detective story, beginning in the family’s Palo Alto home where Dafoe languished, unable to bear any touch or sound, and unable to move or eat. Davis was convinced that his son’s affliction was indeed a biological disease, and began a multiyear hunt for markers that would confirm his hunch, and attract the research funding needed to find a cure.
I spoke to White about the genesis and development of The Puzzle Solver.
How was this story different than your other research assignments?
TRACIE WHITE: I was originally assigned this story by my editor at Stanford Medicine magazine. Over the years, first as a reporter and then a science writer, I had gained a reputation for writing tragic stories. For the magazine, I’d written about amputees who survived the 2010 Haitian earthquake, Cambodian refugees with PTSD, and many other heart-wrenching articles—which is probably why I was assigned this one. But this didn’t feel like just another story to me. It felt personal. Being trapped in a broken body, isolated in my parents’ back bedroom in pain like Ron Davis’ son Whitney Dafoe was my own worst nightmare. I couldn’t imagine how Whitney survived like that for years on end.
You had initially written this as an article—how did it become a book?
A literary agent read the magazine article and contacted me about turning it into a book. I hesitated at first. I knew there would be an emotional toll. But Ron Davis and his wife Janet Dafoe were excited about the idea. It’s been their mission, along with their daughter Ashley, to work together to increase public awareness about this long misunderstood disease, ME/CFS [myalgic encephalomyelitis/chronic fatigue syndrome]. And to find a cure. Their goal was to make Whitney the poster boy for ME/CFS, much like celebrity Michael J. Fox is for Parkinson’s. The entire family was willing to forgo their own privacy, to dedicate their lives to this mission and to share their very personal story with the world. How could I refuse to help.
What was the process like? How long did it take from interviews to finished manuscript?
The entire process took about four years, beginning with the interviews I did for the magazine story. The book proposal took two years to write—which was a shock to me. I figured it would take like maybe three months. When Hachette Publishing bought the proposal, they then had me sign a contract saying I would write 70,000 words in nine months. I signed the contract and immediately started to panic. At that point, the longest story I’d ever written was maybe a 7,000 word magazine story. The first draft took over a year to write, during which time I did more research. That was followed by a frenzied two-month rewrite process. Throughout the ordeal, I promised myself I would never again criticize another nonfiction book author now that I understood the pressure of actually writing one myself.
Describe how you were ultimately able to interview Whitney Dafoe, despite the fact that he couldn’t talk due to his illness.
I didn’t meet Whitney until two years after I wrote the magazine story. He was far too sick at the time for anyone other than his caregivers to be allowed in his room. He was kept alive on a feeding tube and was unable to speak. Whitney started spelling out words with Scrabble tiles to communicate to his parents and other caregivers, then for about two years, he couldn’t communicate at all. I was well into writing the book when Whitney’s parents discovered that an infusion of the drug Ativan calmed his nervous system, enough that, for at least a few hours every month or so, he could gesture and use his hands to create a kind of sign language.
At first I figured I’d never be able to even meet Whitney, let alone communicate with him. But Whitney chose to spend some of the few hours available to him while he was on Ativan, to tell his story to me. Whitney is an activist for ME/CFS. He’s desperate for a cure for himself, but also for millions of others sick like him. For a few hours every two or three months, I’d join Whitney in his hospital room, work hard to quiet my own emotions and just listen to Whitney. He was sacrificing his own health to tell me his story. I didn’t want to waste a moment of that time.
‘The Puzzle Solver’ by Tracie A. White with Ronald W. Davis is available at Bookshop Santa Cruz and other booksellers. traciewhite.com.