The Puzzle Solver

by Tracie White

  “I was a brand-new doctor,” she said, laughing, referring to when she was treating patients in the 1980s. “I still had braces on my teeth.” For Klimas, the story of ME/CFS revolves around the fact that most of the people who get it are women; the ratio of women to men is as high as four to one, according to the CDC. It falls into that category of so-called contested diseases that primarily affect women, such as most autoimmune diseases. Diseases often dismissed as hysteria. Klimas’s first patient was a woman. After that, word quickly got around that she was treating women with ME/CFS, and the numbers grew. She told me a story about the day in 1996, when Hillary Johnson’s book was first published, and how her university had instructed her that she was going to have to do an interview about the book on NPR the next day—even though she hadn’t even read it yet.

  “Luckily Hillary had indexed her book,” she said. “I grabbed a copy and looked myself up, and thought, Phew, OK, at least I’m a good guy. I wasn’t sure before that.” The NIH scientist Stephen Straus was one of the bad guys I remembered. She laughed and smiled and adjusted her glasses, then added: “It was a controversial book. It wasn’t altogether wrong.” Then she grew more serious and paused to consider how the disease had changed her own life.

  “I was very interested in women’s health, and this was soul satisfying for me,” she said. “A woman comes along, and it’s dismissed as hysteria. That’s truly what happened with this disease. That’s what this was all about. It was one of those women’s diseases that gets ignored. It turned out to be transformational for me.” She paused again, then added, “At times, it wasn’t good for my career.” I saw the irony in the fact that perhaps this mystery disease, often dismissed as nothing more than “female hysteria,” was finally gaining serious attention, in part, as a result of the story of Whitney Dafoe, a handsome young man with a brilliant father who agreed to be its poster child.

  Before leaving the conference on the second day, I walked down the hill from the auditorium and returned to the stately building with the white pillars out front and the wide green lawn. I walked up the same steps where FDR spoke and through the hallways, down to Francis Collins’s office. When he saw me, I mumbled something about Ron Davis and a book. He nodded his head, smiled, and said I could give him a call anytime, but he was busy at that moment. When I called later, he told me, “The history of this has been very frustrating for anybody who lived through it. Many turned a blind eye. I tell people: don’t judge us by what we did ten years ago. Judge us by what we do now.”

  Chapter 12

  The Superman

  THE SUN GLISTENING OFF the slick blue ocean flickers through the trees, blinding me. The bright light flashes on and off and on and off through the train windows, as it races past the Pacific coast. My beautiful daughter sits across from me, squinting her eyes at the vast horizon, a book of poetry in her lap, and she’s smiling.

  I flew down south to Irvine to join Kaily for the train ride home during her summer break from school on the Coast Starlight Express. The train hugs the shoreline from the Los Angeles train station much of the three hundred miles to the agricultural fields of Salinas—a twenty-minute car ride from our home. The tide is far out. A perfect time for a run, I think. Oil rigs stick up oddly from the shimmering waters, which means we must be closing in on Santa Barbara. There’s nothing between the train and the ocean but some scrub brush, then sand, then the white foam from the waves. A few surfers. And sky.

  I’m bringing my daughter back home, I think, and it catches in my throat. Every time one of my grown children returns home, this happens. I think of Whitney, and a similar tug at my heart makes me long to see Ron bringing his son back home again to him too, but this time healthy and strong. Outside, hawks float effortlessly on the air, and I think about how Whitney should be here to take photographs of all this. Of the hawks and ocean, the old lady staring out at the sea, a young woman seated next to her fiddling with her fishnet stockings, and the family laughing and chatting in Chinese. And some of Stephanie Land’s words about Whitney come to mind: “He found beauty in everything—the rise of a burned spruce tree, the surface of a scummy pond. Whitney was a wanderer. A lover of nature, his camera always ready by his side.”

  After flying home from the conference back East, I’d returned to my cubicle at work and told the office about Ron’s upcoming nanoneedle study in the journal Proceedings of the National Academy of Sciences. I figured Hanae, the genetics writer, would want to write a press release about it. Part of our job was to promote scientific papers published by Stanford faculty, pushing the news out to the media as quickly as possible.

  At my desk, I opened my email, wading through the long list that had grown there while I was gone on my trip. I opened one from the Open Medicine Foundation that featured a video of Ron sitting in his leather chair in his library at home, with Rex, the tortoise, just out of view. Ashley routinely records videos of him from that spot to update the ME/CFS community and other donors on how their money was being put to use.

  I scrolled down farther and stopped at another email, this one from Whitney’s friend Marta. She wrote that she had been able to track down Whitney’s monk, Shenyen. Further down was an email from Shenyen himself. I was excited to tell Whitney, but I knew I’d have to wait awhile, until the next time he took Ativan.

  The nanoneedle study, when it hit the media, proved a major success. Both Rahim and Ron were interviewed by reporters from around the globe. Hopes of finally getting a tool into doctors’ offices that could definitively diagnose the disease ran high. Our office was flooded with media calls. Headlines announced Stanford had found scientific proof of ME/CFS and discovered the first potential simple blood test for the disease. Even the NIH director, Francis Collins, tweeted about it.

  “I’m hoping this will help the medical community accept that this is a real disease,” Ron was quoted as saying in a San Francisco Chronicle article under the headline “Stanford Discovery Validates Chronic Fatigue Syndrome, Could Improve Diagnosis.”

  The study used blood samples from people with ME/CFS compared to blood from healthy people. Scientists then exposed the cells to salt, which acts as a stressor on cells and causes them to exert energy to pump out the extra salt. Ron’s earlier ME/CFS studies analyzing the citric acid cycle had shown that diseased blood cells could not produce as much energy. The technology the scientists used to test changes from cells’ energy expenditure contains thousands of electrodes in a microchip about the size of a corn kernel that measure the electricity passing through the cells. The change in electrical activity is correlated with the health of the cell. The idea is to stress the cells, then compare how each sample affects the flow of the electrical current. A big change is a sign that the cells are in trouble.

  When cells from both samples were then passed through the microchip, those from the ME/CFS patients showed a major increase in the expenditure of energy, indicating that the diseased cells had been altered by having to pump out the salt, while samples from the control group remained unchanged. Differentiating between the two groups was now easy.

  “It was a very, very clear signal,” Ron was quoted as saying in an article in STAT.

  Rahim, who had by then left Ron’s lab and was on faculty at UC Irvine, added, “When they face this new environment, their reaction is different from the reaction of healthy cells.” When I emailed Rahim to find out more about the study, he emailed back that, depending on future funding, he hoped to develop a prototype for a simple, handheld ME/CFS diagnostic device to be used in a doctor’s office within a year or two. I was excited. Ron was now so close to crossing one of the hurdles he had set up for himself years before: creating a diagnostic test for ME/CFS.

  I set up another appointment to meet with Ron at his lab to celebrate the happy news. When the day arrives, I walk across the street from my office during one of my lunch breaks, wave to the security guard in the lobby, smile at the rows of Ron’s patents hanging on the wall, and head around the corner to Ron�
��s office.

  He is sitting at his desk. Whitney is still smiling down at him from the photo on the wall facing the desk. Ron’s head is bent down over his work when I walk in; then he looks up and smiles.

  “Congratulations on the publication,” I tell him as I sit down in a chair across from the desk. He nods, but I can tell he has already put that news behind him. He’s back at work on his latest hypothesis. He’s finally been able to fund his researcher—Robert Phair, a biomedical engineer—who had been volunteering in his lab for several years now—and together they are looking further into the metabolic trap hypothesis. They published a paper on it in the open journal Diagnostics a few months back.

  “It’s looking pretty promising right now,” Ron says, with a bit more of an uptilt to his voice than usual. I know he’s excited about this theory. He believes it could save his son’s life, if only it were true. He knows it may not be. As he repeats over and over again to me whenever we discuss science, it’s a scientist’s job to disprove his own theories. Only after he utterly fails to do that, then maybe there is something to it. He has yet to disprove this theory, but he’s trying.

  “We still need to run a lot more tests, but the early results are positive,” he continues.

  “So can you run through the metabolic trap hypothesis for me one more time?” I ask Ron, and his face lights up. I can see the cogs in his brain begin to whir, and he pulls out a blank notepad and begins to sketch. He is the professor, and I am his student. A complicated interconnected map of molecular pathways appears on the notepad, with arrows pointing to chemicals that lead to reactions occurring inside a human cell that create interconnected hubs of activity. He continues to draw the cellular processes that keep us breathing, that keep us working and playing and living our lives, processes that he believes are broken inside his son’s cells.

  As the scientist continues to draw, his breathing slows, and he grows calm. When I ask him to spell the names of some of the enzymes he is drawing, he shrugs me off. I should know by now: this brilliant man can’t spell. His mind was built to understand how chemistry works. And it’s here within the intricate workings of the molecular pathways of life that he finds hope. Science is what saved him from an unhappy childhood. It’s what built his career. Science provides the tools necessary to unveil truths from the apparent chaos of matter, and of life itself. Here, written in these pathways, he’ll find answers to the questions that plague him. Fixing broken pathways, he still believes, can save Whitney’s life.

  A few months later, I got a text from Janet, asking once again if I could come to visit Whitney. He had scheduled a date in the summer to take Ativan again, at home this time. We could meet all together in his bedroom. Ashley would be there, and his general practice physician, Dr. Richard Lee. Whitney was worried about his teeth and his eyesight, and Dr. Lee would check them out. Finally too, I thought, I could tell him about Shenyen’s email. It was always gratifying when I could make Whitney smile.

  It was a warm summer evening, and the air outside sat soft on bare arms. Inside his bedroom Whitney was enjoying socializing with the three physicians who had gathered around his bed. One was a researcher from Ron’s lab who had decided to see if she could figure out what caused Whitney’s remarkable reaction to Ativan by analyzing his blood both before and after he had been given the drug. Whitney was smiling broadly at their silly jokes, like, “How many doctors does it take to change a light bulb?” He seemed to be in a great mood, none of the usual angst showing on his face at all.

  Over the many months since I’d begun visiting him, it seemed to me that Whitney was getting somewhat better. Occasionally, he would take off his noise-blocking headphones, and I had watched him look at the screen of my iPhone once in awhile. A year or so ago, he couldn’t even look into other people’s eyes or listen to them talk. Still, he could only do any of this when he took Ativan, and each time he took it, he suffered for weeks after. Still, like this day, he was now even occasionally allowing a few more people into his room when he was on Ativan.

  I thought back to one of the first visitors, Jen Brea, a young woman with ME/CFS about Whitney’s age, who had joined me during a hospital visit a few months back. The family had met her during the filming of Unrest, Jen’s award-winning documentary about ME/CFS. Whitney had risked his health to allow another cameraman into his bedroom back then, before he’d tried Ativan. On the day at the hospital, Whitney had managed to get his mom to find his fifteen-year-old iPod buried somewhere deep in their basement and bring it with them in the ambulance. During the months prior, he must have been creating a playlist in his mind that he wanted Jen, an ME/CFS activist like him, to post for him online to share with other severe patients like him. Jen and I sat by his hospital bed and fiddled with his iPod for at least an hour or two while Whitney gave us pantomimed instructions on how to find each of the six songs he’d chosen hidden there among the thousands of other songs. He waved his fists each time we got one right. When we found one of them, a song by the Flaming Lips called “Waitin’ for Superman,” he jerked his head, indicating he wanted the playlist named after the song in honor of his dad. Then Jen read the lyrics out loud while Whitney smiled and nodded along.

  Tell everybody waitin’ for Superman

  That they should try to hold on best they can

  On that warm summer evening, when I walked into Whitney’s bedroom, he was silently laughing along with his group of doctors. I sat down on an empty folding chair in front of his bed and waited for the laughter to stop to tell him about Shenyen’s email.

  “I heard back again from Marta,” I said. As I hoped, he smiled in response. “She found Shenyen. He’s on a three-year retreat of silence in Germany. But he gets a few days off every few months when he’s allowed to connect with the outside world, and he sent you an email.” When I had earlier told his dad about this, Ron had chuckled at the irony of the monk’s years of silence dotted with only occasional reprieves, much like Whitney’s own years of silence. He loved to hear stories about Whitney’s Buddhist beliefs. They reassured him about the long stretches of isolation his son still continued to suffer through. Next I pulled out a printed copy of Shenyen’s email from my backpack and began to read it out loud to Whitney.

  “My name is Shenyen, the monk that Whitney hung out with briefly in India in 2006. I just heard from Marta about his illness. I remember Whitney as a bit of a dreamer, which to me jelled nicely with his intention to practice photography back in the U.S. after his India trip. He was quiet and thoughtful, but also easygoing and kind. And of course in India we are all living in slow time, free of clutter and a long way from home, at ease with life and open to its hiddenness. We were happy.” I paused, looking up at Whitney. He was nodding his head sagely, in agreement. Then I read on:

  “I hear he is now expressing his sweeter aspirations which he nurtured in those days—aspirations to help all beings—in the midst of his illness: encouraging people with the same illness who feel like giving up to give their despair to him and let him absorb it. I know he can be creative with anything life throws at (or gently presents to) him. And I’m sure he understands that no one in this world is ‘just sick,’ no one in this world is ‘simply healthy.’ All the best to you, his caregivers, and the noble warrior himself.” When I looked up again, Whitney was still nodding his head. He looked so much like a monk himself at that moment that I laughed out loud.

  Suddenly, the bedroom door opened, and Whitney’s head swiveled around to watch Ashley as she stepped inside. She was dressed in a black leotard, and her pregnant belly stuck out big and round. She looked both happy and a bit terrified.

  “Bun in the oven!” she said, staring wide-eyed at her brother. Whitney’s eyebrows arched high in astonishment. He grinned, rubbed the knuckles of his fists together and pointed at her belly.

  “I’m due in about three months, in October around your birthday,” she told Whitney. Together they smiled, then tears filled their eyes, and I looked away. I knew Ashley had a
lready told her brother about her pregnancy a few months earlier—the last time he had taken Ativan—but he was just seeing the proof of it for the first time now. When he hadn’t been able to attend her wedding three years earlier, she had been both guilt-ridden and heartbroken for moving on with her life without him. But at least, she hoped, he could be part of this pregnancy and the birth of her child. He reached out and took hold of her hand. Touching is so rare for him now. I get up to leave and join Janet in the kitchen cleaning up from dinner. They need some privacy, I thought.

  I’d read a post that Ashley had written on Facebook after telling Whitney she was pregnant some months earlier. Somehow he understood what she was feeling and made it alright. She wrote: “When I got pregnant I knew the first person I wanted to tell after my husband was my brother.… And at seven weeks I was finally able to see him and pantomime to him that I was pregnant. He immediately burst into inconsolable sobs. I sat with him, and cried with him, while he processed what he was missing. When he finally calmed down he looked into my eyes and pantomimed to me, ‘thank you for not waiting.’ In that moment I knew exactly what he meant.… I knew my brother. It put to rest every fear I had had of living my life without him by my side.”

  On October 15, Amalia Rose was born, tiny and perfect; Mom was healthy and fine. The birth was twelve days after Whitney’s birthday. Parents and grandparents together posted all kinds of photos online. I was in the hallway outside Whitney’s bedroom about a month later, when Ashley brought the baby to meet her uncle for the first time. He turned thirty-six that year—another year gone. When Ashley opened his door, Whitney motioned for everyone else in the bedroom to leave. He wanted to be alone with Ashley to meet the baby and greet the new life. An hour or so later, when I returned, Ashley was sitting by his side, the baby cradled in her arms. Whitney, lying on his side, was holding the Buddhist necklace made out of thin green string that always hangs around his neck, pressing it gently against Amalia Rose’s tiny foot, his eyes closed in prayer.