The Puzzle Solver

by Tracie White

  Epilogue

  DEEP INTO THE CORONAVIRUS pandemic in the spring of 2020, my visits to Whitney stopped. I hunkered down at home, social distancing with my husband from everyone else. Whitney, with his weakened immune system, could no longer have any visitors, nor could Ron, since he is well past the age of sixty-five and has heart problems. I started working full-time at home from my office in my daughter’s bedroom and grew obsessed with the hummingbirds that flitted through the trees outside the bedroom window. As always, I prayed for my own children, still far away, to keep healthy and safe.

  I wrote about the coronavirus, noting that China was quickly able to map the virus’s genome soon after the initial outbreak, which helped speed research along. And I thought proudly of how much Ron’s career had helped to make that happen. I wrote stories about ICU heroes, about new research into gastrointestinal symptoms, and potential drug treatments. Over and over again, the tragedy of this new pandemic revealed to me just how reliant the world is on good science to save lives. The scientists themselves, like the NIH’s Anthony Fauci, became the new leaders so many of us depended on to steer our nation out of this growing crisis.

  I also began to notice an alarming number of media stories about the possibility that this new virus could trigger ME/CFS. Some were saying how a portion of COVID-19 patients had symptoms like muscle aches and severe fatigue that lingered on so long they were calling it post-viral fatigue. I knew that viruses could trigger ME/CFS, so when I got an email from the Open Medicine Foundation announcing it was raising funds to launch Ron’s planned study of the connection, I wanted to talk to him. (By now, the OMF had become a fundraising machine, reaching $19 million in donations for ME/CFS research.) The two of us set up a Zoom meeting, the new way everyone was communicating these days. For four years now, he’d been a part of my life, and I was looking forward to the meeting.

  Up on the computer screen, Ron smiled a hello, then launched right into the science, as he always does.

  “We want to do a long-term study to see if—and if so, how—the COVID-19 converts to ME/CFS,” Ron told me. “Technically, to be diagnosed with ME/CFS you have to have fatigue for six months. The virus hasn’t been around long enough for that yet. We do know that about 10 percent of those who get mono, which is also a viral disease, come down with ME/CFS. Virus outbreaks have triggered ME/CFS in the past, so it’s a big concern. It’s occurred to us that the conversion might occur during the active coronavirus infection, so we want to start getting extensive molecular data from patients when they’re still sick with the virus and follow them for at least four years. This could enable us to discover the cause of ME/CFS. Until now we’ve only been able to study patients who have already had the disease for several years.” Ron was clearly excited about doing the study.

  We talked on for a bit about other studies continuing at the lab. He elaborated on the latest scientific updates on the metabolic trap research and he said that they recently had a breakthrough. They were able to show that the trap was more than just sophisticated modeling and demonstrated that it actually worked in yeast.

  “Now we can look for a drug or a condition that will get yeast out of the trap. This treatment then might work on patients and cure them if the trap is causing ME/CFS,” he said. When I asked him about how the family was faring through this pandemic, he smiled that crooked smile of his and said that he and Janet and Whitney were all being very careful to avoid any exposure to COVID-19. Then he grinned and turned to show me just how long his hair had grown. “I’ve almost got a ponytail by now!”

  One day, not long after that, I sat down at my laptop, opened my email, and jerked my head up with surprise. There was a message from an address that I’d never seen before: whitneydafoe. I figured either Janet or Ashley had used Whitney’s email to send me a message, but when I opened it, I knew right away it was from Whitney himself.

  “Hi Tracie! It’s an email from me!” I read in total shock. “I’m experiencing some adrenaline or something that’s giving me a brief time of being able to use my phone a little. Not sure why probably one of the experimental drugs I’m always trying.”

  Over the next few months, Whitney kept writing, sending emails from his cell phone. He speculated that Abilify, a new drug he’d begun taking recently in microdoses of 2 mg a day, may have made a difference. He didn’t know how long it would last—short improvements in the past always had disappeared so fast—so he wrote for hours on end, trying his best to communicate as much as he could of his many long-hidden thoughts. He wrote too much, and it sometimes made him sicker, but he kept on writing until he dropped. He’d sit on the toilet near his bed and write. And he’d write from bed. He posted long essays to Facebook about his dad’s research, and the stigma of this disease, and how the NIH was still rejecting research grants. (His dad’s latest request for nanoneedle funding to develop it for use in clinics as a diagnostic test had been turned down.)

  Whitney emailed ex-girlfriends and old friends, finally getting a chance to tell them, in his own voice, how much he loved them and missed them still. For awhile at least, some of his intense loneliness subsided. He struck up a much-longed-for email correspondence with Shenyen the monk, and together they philosophized. “The Buddha referred to old age, sickness and death as ‘divine messengers,’” Shenyen wrote. “They come to awaken us from the sleep of an unlived life.”

  Whitney kept writing to me as well. I asked him many questions, about his worst times and his best, how his faith in his dad kept him going and how Buddhism, too, helped keep him alive. Despite his many years of suffering and all his continuing pain and isolation, Whitney’s love for life and desire to help other people with his disease continue on. He plans for the day his father finds a cure and he can go for a drive in his car. He’ll garden, listen to music, watch movies, go to Giants baseball games, play baseball(!), cook, eat, and go on long hikes. “And strangely,” he wrote me, “buy a pair of shoes (because of what it signifies—walking in public outside, wearing clothes, feeling more human).” He hasn’t worn a pair of shoes for a long time.

  “I often feel like someone hit the pause button on me and fast forward button on the rest of the world,” he wrote.

  One day, during this correspondence, I got a text from Janet. I’d been reading her many tweets and Facebook posts that alternated between adorable photos of her new granddaughter and repostings of Whitney’s long Facebook messages that she decorated with lots of exclamation points. She texted me that Whitney was thinking about taking his first shower in years, a longing he’d written to me about in his emails. A shower, I thought—now wouldn’t that be grand.

  I thought about my conversation with Laura Hillenbrand, the author of Unbroken, whom I had talked to so many years back, before I had met Whitney, when I was hoping to understand what it was like to be sick with ME/CFS. She, too, had been bedridden for years and then had recovered enough to be able to write books from bed. My own hopes soared as I remembered the awe in her voice when she told me that she had recovered even more after that, enough to leave her home and drive thousands of miles across the country to a new home with her boyfriend.

  “We drove 4,300 miles,” she told me. “Through the Rockies and the Badlands all the way to Oregon.” And a vision of Whitney appeared, on another one of his “super epic road trips” driving cross-country with the radio blaring, leaving the Bay Area behind, maybe driving down south to Mexico, or north to Alaska, or wherever it was he traveled in his mind all that time he spent alone in his room with a future still to imagine.

  Acknowledgments

  Thanks to those in the ME/CFS advocacy community who provided a wealth of resources including in-depth research, and historical archives—that contributed to the writing of this book. For your passion for the truth and persistence in getting the story told.

  Tracie White Ron Davis

  From Ron Davis

  Thanks to my wife, Janet Dafoe, for her support and help in making this book a reality. We are a team
. She both encourages my research and endlessly works on her own in the fight to end ME/CFS. She has remained at our son Whitney’s side throughout his illness, providing endless love and care. For this she can never be thanked enough. Donations to my lab’s ME/CFS research can be made to the Stanford University Chronic Fatigue Syndrome Research Center at: http://med.stanford.edu/sgtc/donation.html.

  From Tracie White

  My deepest gratitude to those sick with ME/CFS, including Whitney Dafoe, who told me their stories often at risk to their own health. Among them Gerald and Janice Kennedy, Bruce Train, Rivka Solomon, Allison Dykens, Brian Vastag, Hillary Johnson, Jamie Seltzer, Jen Brea, Mary Schweitzer and the other Tahoe women who spoke with me, and many others I can’t name here. To Whitney’s family who opened their hearts and home to me, Janet Dafoe and Ashley Haugen and, of course, to my brilliant colleague and friend, Ron Davis.

  I’m thankful to so many who helped with the making of this book. My agent Farley Chase for believing in this book and sticking with me through the two long years it took to write the proposal. My editor Krishan Trotman at Hachette who took a chance on a first-time author and helped teach me how to write a book.

  My workplace for supporting me. Special thanks to the science writers in the office who had my back including Krista Conger, Bruce Goldman, Erin Digitale, and Hanae Armitage. Thanks to Rosanne Spector, editor of Stanford Medicine magazine who first assigned me this story in 2016; Patricia Hannon, Margarita Gallardo, Becky Bach, Mandy Erickson, Alison Peterson, John Sanford, and more. To those talented Santa Cruz writers “the Abbeyites” whose advice was invaluable. Susan Sherman, Amy Ettinger, Jill Wolfson, Shelly King, and more. To Jonathan Rabinovitz along with so many other editors from my past who continually fixed my misplaced commas often without complaint. Peggy Townsend, Tom Long, Mike Blaeser and other former co-workers at the Santa Cruz Sentinel including photographer Shmuel Thaler.

  To the many journalists, researchers, and scientists who helped inform this book including David Bell, David Tuller, Cort Johnson. Bruce Schaar, Laurel Crosby, Katrina Hong and others at the Stanford Genome Technology Center. And Mary Dimmock for her meticulous research and ability to communicate it to me. To Adrianna Baires for always being there at the door to Whitney’s hospital room with lunch.

  Most of all to my family and friends who supported me including my father Richard White, now passed. My mother Lyn White; my sister, Lisa Pepperdine, who listened intensely to my endless mumblings over the reorganization of chapters; Zak, Max, and Tony Pepperdine; Kellie White and Santiago, Santi and Andres Montufar; Maria Gaura and Mimi Rudd. To Jana and Julia Davids, who constantly encouraged me; novelist and college roommate Mary Smathers and our emergency sessions in Moss Landing. And author Kris Newby, colleague, friend, and role model.

  To Michael Ondaatje for writing the novel The English Patient about hope and healing which inspired the original title of this book The Invisible Patient. Whitney adamantly shot that title down. ME/CFS patients have been called invisible for far too long.

  To my loving husband Mark Dorfman, who many years ago said it was OK to be an English major, and to my two children, Kaily and Ben, who opened my heart.

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