by Tracie White
Ron yawned, then perked up at the photographs and started shuffling them around. There was a snapshot of Ron as a newlywed laughing with Janet, his young bride; another of him as a pink-cheeked four-year-old posing with his older sister, Patty; and a more recent one of him carving a cradle for his soon to be newborn son. Several more provided a glimpse into Ron’s career as a scientist, as he quickly rose through the ranks of academia, from Caltech to a postdoc position at Harvard, then on to the spot he most yearned after: a faculty position at Stanford. There was one of a studious-looking Ron, in a turtleneck, animated in front of a giant blackboard addressing a crowd of the world’s leaders in molecular biology at the now famous Asilomar conference in 1975 on the ethics of recombinant DNA. And another of him shaking hands with the pope during a trip to the Vatican to discuss the ethical ramifications of genetic engineering. Cool, I thought. And then, way back at the beginning of his career, as a graduate student with a faint wisp of a mustache, he is reaching up high to adjust that giant electron microscope in the basement at Caltech. Ron picked up this photo and smiled at it.
“Caltech was a miracle for me,” he said. “I was scared to death, but I loved it right away. I decided I was going to enjoy myself and learn as much as I could until they discovered I was too stupid to be there and kicked me out. I still didn’t know that I had dyslexia.” That got Janet talking about how the two of them met at Caltech when she was a freshman at nearby Pomona College.
“He was like this poor country boy with a rope tied in a knot as a belt,” she said, and they both guffawed. The nickname Farm Boy stuck. They met at a dorm party thrown by a bunch of physics graduate students—must have been a real rager, I thought, though not unkindly.
“Our first date was going to Dino’s for dinner, this Italian place in Pasadena that has the best minestrone soup ever. Then he took me to the Ice House, a club where we heard the Irish Rovers. You know the lyrics ‘You’re never gonna see a unicorn’? There were velvet pictures on the walls lit with black lights. It was dark. I thought, Wow, this is cool.”
For their second date, they went to Disneyland to see the fireworks at night. “He told me he made arrangements for Disneyland to stay open late for us,” Janet said.
“And she believed me,” Ron added laughing.
Ron started to talk about his career then, skimming over his first famous paper at Caltech and moving on to research at Stanford. Over his career, Ron has had several of what scientists call aha moments, when a puzzle they’ve been trying to solve suddenly fits together and makes sense. Two of his most famous came when he was conducting research at Stanford, one in a single night just months after he first arrived. His lab was next door to Janet Mertz, a grad student of Paul Berg, professor of biochemistry, whose office was just across the hall. She was working on Berg’s pioneering research to cut and paste DNA from different organisms, which would win him the Nobel in 1980 and usher in the era of gene splicing. But his process of doing this was long, complicated, and tedious.
One day when Berg was out of town, Janet came into Ron’s office puzzled by an unusual finding. She had cut a circular viral DNA with an enzyme that should have made it linear and dysfunctional, but there it was, a piece functioning like normal.
“I immediately realized that the ends of the DNA had not been cut straight across, like everyone thought, but rather, the enzyme had cut it diagonally, at different points on each strand of the molecule, leaving ‘sticky’ ends that could be recombined with other pieces that had been cut similarly. This was a simple method for creating recombinant DNA. Now that it was easy to do, many more scientists started doing it,” Ron told me. “That really sped things along.”
(When I told a coworker of mine who wrote regularly about genetics research that Ron Davis discovered “sticky ends,” she grew goggle-eyed.)
I was scribbling faster and faster in my notepad by that point, struggling to figure out the way his brain worked. Sometimes I’d pause and make the notation “lost!” in the margins and hope my iPhone was doing a good job of recording his words. I knew Ron’s brain worked differently from most people’s, even other scientists. That he’d rather draw spatial diagrams to communicate his ideas than use words and sentences. He’d told me once that sometimes after he’d found the solution to a problem, it might take him a year before he could verbalize it to others.
It had become more and more important to me to understand the science. How else to understand this man or this complicated mystery disease he was now tracking? Sometimes I’d just throw my hands up in the air (figuratively) and find another expert. Since Paul Berg, now in his nineties, happened to be still at work on the Stanford campus, I tracked him down to help me understand sticky ends and Ron Davis, the researcher.
“That was a major breakthrough that Ron made together with my graduate student Janet,” Berg told me, the two of us seated in his small office. I’d gotten over my nerves at meeting Nobel Prize winners years before and could now just sit there and admire his clear mind and the excitement and energy he exuded when he talked about science. “They showed the enzyme cut the DNA molecules in a staggered way, and that enzyme became the magic enzyme to make recombinant DNA. But that was typical of Ron. He had an insight for finding tools to solve difficult problems. He is just extremely clever.”
Another of Ron’s most famous aha moments came later in his career, when he was studying polymorphisms in yeast, which are places on the genome that have mutated so that different organisms have slightly different sequences at those locations—a sort of unique genetic freckle found on individual genomes.
In April 1978, Ron and David Botstein, a geneticist from MIT, traveled to a University of Utah conference held in the ski town of Alta in the Wasatch Mountains. What captured their attention was a graduate student and his adviser, geneticist Mark Skolnick, discussing their attempts to painstakingly map the inheritance of a gene for a specific hereditary illness in humans. But Skolnick was striking out. As Ron and David sat in the audience listening, they began to wonder why the researchers weren’t doing it a much simpler way.
“Both David and I had discovered the use of DNA sequence variants or ‘polymorphisms’ to do genetic mapping in yeast,” Ron said. “We’d been doing this independently in our own labs since the early 1970s. I didn’t realize scientists were not trying to do this in humans until then.”
Sitting at a bar at the end of a long day of meetings, he and David had a discussion with Skolnick about his attempts to map BRCA cancer genes using protein polymorphisms.
“Why are you using proteins?” David asked.
“What else should I be using?” Mark replied.
“DNA!” Ron exclaimed. David and Ron then explained to Mark how it would work. This was the birth of the idea to use polymorphisms in DNA to create genetic markers for identifying and isolating disease genes. It would also lead to the use of DNA in forensic science and eventually the construction of the entire map of the human genome. One day, it would also allow Ron to get his own son’s genome sequenced.
And now there was another aha moment, not nearly so famous as the other two but one that was by far the most important to a father who was trying to save his son. It happened much more recently, during the time that he had formed the ME/CFS research team in his lab and was running all kinds of technological tests on Whitney’s blood, their only patient sample at the time. They were casting that broad net, as Ron had described it, hoping to catch some fish. And finally they did.
One night, in the spring of 2015, Ron and Janet were together again in their library. Ron was working on his computer when his eyebrows suddenly shot up and he motioned to Janet to come over to look at something on the screen.
“I thought, Wow,” Ron told me. He’d been waiting for two years to get the results of a test that would show how his son’s metabolome was functioning, a chart of all of the metabolic processes going on in his body. I’d seen the chart once before, when Laurel showed it to me on her computer screen i
n the basement of the lab. She’d been trying to deconstruct Whitney’s ME/CFS symptoms into molecular mechanisms. I imagined the chart, which looked like an enormous dot-to-dot puzzle with different chemical reactions leading to endless others in an enormous interconnected mass, endlessly whirling around in three dimensions in Ron’s ever-active mind.
He looked at the chart for about three minutes and immediately saw that Whitney’s body was out of fuel.
Ron drew his fingers over the lines on the chart, showing Janet evidence of vitamin and nutrient deficiencies caused by Whitney being fed intravenously at the time. Then he pointed out a whole lot more deficiencies in the biochemicals, or metabolites—the amino acids, carbohydrates, lipids, and nucleotides—that were needed to make energy and keep the machinery of the body running. Of the 700 measurable metabolites plotted on the chart, Whitney had abnormal levels of 193.
“I know what’s wrong,” he told her. “It’s the citric acid cycle that makes ATP. That’s why he’s so fatigued. It’s probably a problem in each individual cell.” The citric acid cycle is a series of chemical reactions within the cell that use food to generate energy in the form of the molecule adenosine triphosphate (ATP). Every cell uses ATP for energy. It’s the fuel that keeps the cell going. It was clear that several metabolites in the citric acid cycle were abnormally low, suggesting that Whitney was having trouble making ATP. Ron was excited because he knew he had the biochemistry skills needed to investigate the problem. Still, he knew that it would be no easy task. Given that there were 1,600 genes involved in the workings of mitochondria, where ATP is made, finding what was wrong would be a daunting task. Still, in that moment, they both were elated. Here was irrefutable scientific evidence that there were defective molecular pathways in Whitney’s body and that ME/CFS was a real disease.
Ron and Janet were in tears.
By that summer, Whitney had been living off of liquid nutrients, delivered through an IV line, for more than a year. Ron kept running more updated metabolome tests that showed Whitney was worsening, that he desperately needed to get more nutrition, to keep his heart going, his blood pumping, and his metabolism running. He now had three doctors: two CFS specialists, including Eric Gordon, and a general practitioner. All three said Whitney needed to get a feeding tube, called a J-tube, to deliver pureed food and other medicines and nutritional supplements that an IV line couldn’t deliver. Janet, feeling helpless and desperate, started the hunt for a surgeon, since that was the only way he could get the feeding tube inserted. She eventually found one on a recommendation. On a sunny day in June, she and Ron sat in an exam room waiting for a consultation with a well-known surgeon. Whitney was too sick to come along. Finally they had found a surgeon to help. They were so full of hope. Janet even dressed up and wore one of her Native American jewelry pieces.
When the surgeon arrived, Janet handed him Whitney’s thick medical file and started to explain to him that her son’s doctors had all said he needed a feeding tube to stay alive.
“He looked at the files for about three minutes,” Janet told me.
“I don’t think a feeding tube will help,” the surgeon said.
“Oh really?” Janet asked, a little confused but still hopeful that he would offer something. “Why? Is there something else that you think could work?”
“No,” he said. “Frankly, he needs intensive psychiatric intervention.”
This was a statement I’d heard many times during my work in the CFS community. I’d heard it from patients like the Tahoe couple Gerry and Janice Kennedy, who had seen doctors who didn’t believe they were sick. I’d been to the same support group that Whitney once had and listened to the stories over and over again. “I can’t find a doctor who will treat me.” “My medical insurance won’t pay for any treatments.” “I need someone who will help me.”
It was unbelievably shocking to Janet and Ron.
“I can’t tell you how upsetting that was,” Janet told me. “Ron and I both felt like we’d been punched in the stomach. I’d heard stories like this from other people sick with ME/CFS. I knew it happened. But now I really knew. It was deflating. We really needed help, and here was this arrogant jerk.” The surgeon just didn’t believe in the disease. It didn’t matter how much Ron, a prestigious scientist at the same institution, knew about it, or that Janet had a PhD in psychology. He’d never seen Whitney and only spent a handful of minutes reading their son’s long medical charts before making his own diagnosis. He believed Whitney needed to see a psychiatrist.
Chapter 10
The Heartbreaker
ONE SUMMER BACK BEFORE Whitney started getting sick, when he was just nineteen years old, he worked as a photography intern for the biology department at the University of Alaska, Fairbanks. He met a young woman there, Stephanie Land, a twenty-three-year-old aspiring writer living in a cabin without running water and working at a coffee shop in Fairbanks. Years later, Stephanie would write an article about their love affair that summer in an article published by Longreads, which I’d happen to stumble upon. But by that time, Whitney himself was far too sick to read her story. He couldn’t even look at the photograph of himself that accompanied it.
The two met at a barbecue during that summer in the home of the dean of the biology department, where Whitney was housesitting. He was assigned to work with the biologists at a large animal research station nearby, and he would trail them out into the field to take photographs of their work. Stephanie arrived at the get-together with another guy, but when he left early, she stayed behind.
She fell for Whitney hard, immediately pulled in by his calm presence and the intensity of his blue eyes, a connection as powerful and instantaneous as she’d ever felt before. They both knew that, when the four weeks came to an end, Whitney would get on a plane and fly off. He didn’t want to be involved with anyone long term. He wanted to spend his life traveling, he told her. But for the next four weeks, at least, they rarely left each other’s side.
They explored the wild Alaskan landscape deep into the brilliant night. They hiked into the mountains, disappeared into the spruce trees, and fed handfuls of lichen to fenced-in caribou. Always, there was music, lyrical and loose, and hot coffee and thick homemade grilled cheese sandwiches. They danced alone together in a yellow kitchen, and the boy took photographs, especially of her. She was his muse. You can hear the folksy, lilting lyrics playing in the background. It’s Dire Straits:
Walking in the wild west end
Walking with your wild best friend
The Alaskan summer days were long, and the constant light inspired the young photographer. He’d photograph the light’s reflections. How it slid down a spruce tree or caressed her cheek. She watched him watch the world. He’d focus on the smallest details, finding beauty in everything. He taught her to take time to pause and notice the beauty in the mundane. She observed him with awe as he stood mesmerized, watching water from the shower stream over his hands. “Enlightened” is the word she uses most often to describe his spirit, and it surprises her still. Such a serious word for such a young man, especially one who often acted so goofy at the same time.
Mostly, there was lots of laughter and music, lots of music. Whitney lived and breathed music. They listened to folk singers like Bob Dylan and John Prine. He made a music mix for her while he was photographing ice formations out on the Alaskan tundra with the biologists, fighting off the cold and the swarms of bugs. He titled it Whitney’s Cold, Buggy, Work Mix. Then he hand-scrawled drawings of naked butts on the CD cover just for fun. Still just a kid, she thought.
When Whitney’s internship was over, the two traded sweatshirts before he left. She wore his green one from Bennington College, and he wore the red one she bought in Homer, Alaska, with the words “Salty Dawg Saloon” printed across the front.
For several years afterward, they’d occasionally email each other. He’d send her links to folk songs by John Prine with heart emojis. Sometimes they would talk over the phone. He would call to tell h
er about the small villages in Jamaica where he had lived for a time or what it was like to watch manatees swim beneath a row boat. He seemed very far away.
A year or two later, Stephanie moved to Port Townsend, Washington. She endured bad relationships, became unexpectedly pregnant, and years later had a baby. She lived with her daughter for a time in a homeless shelter, until she saved enough money working long hours as a maid in other people’s houses, cleaning toilets and washing other people’s dirty sheets. Sometimes she’d think about Whitney, and it helped her through the tough times.
“During my saddest moments, I’d replay scenes with him,” she wrote in that Longreads article. “In my mind, I returned to Alaska and to Whitney, to the enclosure where I crouched in front of the caribou, and I would remember who I was. Through the years, I fought to maintain the person I had been with Whitney.”
I ran across Stephanie Land’s article shortly after writing my magazine story about Ron and Whitney. I was scrolling through a few online news sites one night when suddenly I stopped and leaned in to look closer. There, right up close, was a photograph of a young Whitney caught in mid-laugh, lying flat on his stomach on a patch of grass with his eyes squeezed shut. I took a deep breath. Wasn’t it lovely? This was the way things should have been, could have been, him healthy, happy, and enjoying life. It was a beautiful story. But it was a mirage. Instead, Whitney’s story took a horrible turn, one that ended with me writing about him trapped in a small bedroom struggling for his life. I thought back to him slowly picking up those Scrabble tiles to spell out the word “D Y I N G.”