The Puzzle Solver
Page 5
“I have an energy ‘envelope’ and can think fairly clearly and do very minimal physical movement (like moving around inside my room) for a few hours until my energy runs out and I have to rest because my body ceases to be able to function,” Whitney wrote in an online posting once. “If I push it past this point it can take days to recover, so I don’t do that anymore. But I cannot even talk to people or work on a computer for more than two or three hours at a time.”
Then, finally, some good news. Ron was awarded one of the most prestigious prizes in genetics, the Gruber Prize, an international award founded at Yale University. Recipients are selected by a panel from nominations sent in from around the world, and he was being honored for his “pioneering work in genetic engineering.” The award pleased him, but he’d received many before, and awards really weren’t important to him. The reason this award was important this time was because it came with a half-million-dollar cash prize. And he needed money. Here was the windfall he needed to get his ME/CFS investigation off the ground.
By 2013, Ashley had officially set up the website for the new Chronic Fatigue Syndrome Research Center at Stanford. Ron now began to turn his full focus to ME/CFS research. It was an unexpected turn for a senior scientist noted for his years of genetics research. He immediately started to recruit some of the young scientists and colleagues in his lab. And he came up with his plan.
So far, there was very little data at a basic molecular level that would allow him to generate any hypotheses about the underlying process for this disease, he told me.
“The scientific process begins with observations,” he said. “So I needed lots of them. I planned to cast out a large fishing net, then see what fish I caught.” That meant gathering together billions of molecular observations and looking for clues. From those clues he could generate hypotheses to test.
“I wanted to find something that would help the patients,” Ron said. “Treatments, diagnostic tests, and hopefully a cure for all those people suffering, including my son.”
Chapter 5
Rocket Boy
THE LOBBY OF THE Stanford Genome Technology Center is staffed by a security guard, and the walls are covered with neat rows of framed patent certificates, dozens with Ron’s name on them. To get to his office, you turn left past the guard and left again into a small room with an assistant’s nook up front and a large desk in the room in the back. Behind this desk, Ron keeps a bookshelf filled with genetics and biochemistry texts, along with several large green volumes of the hundreds of his original research articles published in the most prestigious of the world’s science journals—Science, Nature, the Proceedings of the National Academy of Sciences, and more.
Up on the wall across from his desk, where he can be sure to see it every day, hangs a framed photo of a healthy, tall Whitney, looking mischievously down at his dad standing next to him. Whitney looks to be in his early twenties, and he’s got Ron’s wire-rimmed glasses perched low on his nose and is stroking his whiskered chin in a professorial manner. (The same motion he uses as a pantomime for his dad now that he can’t speak.) He’s parodying his dad, and Ron looks out at the camera with a wide, wide grin.
“Ah, he’s mimicking his dad,” I said the first time I saw the photo during one of my many visits to his office.
Ron nodded. “Oh yeah, he was always joking around.”
As I grew more immersed in my research about Whitney’s story, I’d walk across the street from my cubicle in the communications office, usually on lunch break, to Ron’s office to say hi and chat about his latest research. Getting him to return a phone call, or even find your email among his thousands, was pretty much impossible. But I figured out all I had to do was make an appointment with his assistant Katrina several weeks in advance. Then he’d have some time to talk, and he always greeted me with a smile. Back in 2016, when I first visited him, I discovered his office was also a place where he felt comfortable opening up and talking about himself a bit more. He was quiet at home. Mostly, though, he just wanted to talk about science and how it could help save his son.
On the first such meeting, I found Ron sitting behind his desk, preparing to drive home for an afternoon session caring for Whitney. He was wearing his jeans and sneakers, with the North Face logo sanded off. (Labels on clothes bothered Whitney.) But he said that he could make some time for me before he had to leave.
“We’re sequencing Whitney’s genome from his blood samples, looking at expression of the white blood cells,” he told me, launching right away into the science. White blood cells are immune cells, the cells that fight off infection. That sounded good, I thought. He was studying what these cells were producing—or not producing—in Whitney’s body, like antibodies, for example, to fight off any invading infectious cells. Often, when Ron talked about science, it would fly so far over my head, I’d squeeze my eyes tight to keep away the tears of frustration, as if I were a kid stuck on a tough math problem. I’d been working for more than a decade as a science writer at Stanford, but I wasn’t trained like my coworkers with science PhDs. For me, it was often a challenge understanding Ron.
When I asked him how things were going, Ron admitted he was distracted. He was trying to keep thoughts of Whitney and suicide at bay that day. He tried to focus on the science, but those thoughts kept intruding.
“I have a lot of respect for Whitney,” Ron went on. “He’s had friends with this disease who have killed themselves.” Ron told me about a study that showed nearly a sevenfold increase in suicide among those with ME/CFS compared to the general population. Then he looked up at me, with hope in his eyes. “But Whitney told his mother that he never would because of his Buddhist beliefs. They won’t allow him to kill any living creature. He took a vow.”
Ron smiled then, remembering back to Whitney as a kid when he used to call his dad into his bedroom at night to gently pick up a stray spider and take it safely outside.
“I like to think that he travels in his mind to all the adventures he lived before he got sick,” Ron continued. “That he can travel far away in his mind, maybe create new worlds. That’s something I learned how to do as a kid. I was always sick as a kid.”
Ron was a quiet, slight child with intense blue eyes. Born on July 17, 1941, he was the third child of Gerzella and Lester Davis, a hard man with a sixth-grade education who was proud to say he supported his family by the sweat of his brow as a tradesman and that higher education was a waste of time. Before his first birthday, Ron contracted a serious case of rheumatic fever along with his older sister Patty. But while Patty recovered relatively quickly, it would be years before Ron did.
By the time he was six, Ron had suffered through dozens of bouts of strep throat with high fever, the persistent effects of his rheumatic fever reattacking with a vengeance every few weeks and forcing his parents to pull him out of the first grade. Nothing doctors could do ever seemed to help. They lived in Charleston, Illinois, a farming town with a population of eight thousand, so there weren’t many options for getting care. Ron was forced to suffer the constant strep throat, high fevers, and earaches with little hope of a remedy. In his family’s small two-bedroom house he would lie on the couch, too sick to think or talk, utterly miserable for weeks at a time, sometimes months, year after year.
Ron would stay home with his mother. He said that she was a kind woman, with a seventh-grade education, who didn’t like to wear shoes. She always kept busy and often talked to herself as she did her chores, sometimes ironing shirts she took in from the community for ten cents apiece. On one particular day, a day forever etched in Ron’s memory, his mom was busy like usual, most likely washing the dishes or keeping the oil furnace in the living room burning, when the front door clicked open, and the family doctor, Dr. Icknan, came in for a routine house call. He was a gray-haired man with a friendly face, and he walked over to the couch carrying a black doctor’s bag.
“He leaned over me and said, ‘I’ve got something new for you this time,’” Ron told me.<
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A scientist named Alexander Fleming had already invented penicillin by then. It was the first of many future antibiotics that would change the face of medicine and save untold lives. It could have cured Ron, but prior to 1949 in rural Illinois many doctors like Dr. Icknan couldn’t get their hands on any of it—until that day, which is why the country doctor was smiling from ear to ear.
Ron was born just six months before the Japanese bombed Pearl Harbor, launching the US into World War II. The new infection-fighting drug had been immediately put into mass production and sent off to soldiers battling infections from gunshot and shrapnel wounds, but leaving limited supplies back home in the United States. Dr. Icknan would have to wait for a few years after the war ended before it made its way to the small town of Charleston and safely into his black bag.
Ron fondly remembers Dr. Icknan reaching into his bag and pulling out a small glass bottle. Twenty minutes after the medicine was injected into his arm, his fever broke. He was up walking around. He could swallow without pain. It was a miracle.
“Boy, that made a big impression on me,” Ron said. “I remember thinking, Oh my gosh, medicine can do this? Then this is what I have to do. I have to make things that can make sick people better.”
Still, for Ron the penicillin came too late to completely cure his illness. It just made him feel better each time he got sick. It was a temporary solution. By the time he was twelve, he had come down with more than two hundred bouts of strep throat. The rheumatic fever gradually receded over the years with rest and penicillin, but by then it had left Ron with a permanently damaged heart.
After six months of bedrest, Ron returned to school, but he was still the sick kid, thin and frail, and he became a constant target for bullies both at school and at home.
Gene, his older brother, was the opposite. He was a strong athlete who, in spite of being short, played basketball. He drove fast cars and teased Ron mercilessly, constantly punching him in the arm, until Ron would climb onto the roof to hide out under the branches of a leafy tree.
His father’s beliefs didn’t help. Ron, like his brother, was expected to help out with his dad’s hardwood floor business, cutting and laying wood planks, then sanding them until they shined. Once, when he was fifteen, his dad dropped him off at a high school gym, handing him a crowbar, an army cot, and some cash.
“Tear out the water-damaged floor and call when you’re done,” his dad said.
“I finally called him after several weeks,” Ron told me. “I was hot and sweaty, covered in splinters and bug bites and my back ached. When he picked me up, all he said was, ‘Good job, but it took way too long.’”
His father constantly reprimanded him.
“You’ll never amount to a hill of beans,” he told him repeatedly.
Ron’s father, tall and fair like him, believed the only honest way to get ahead in the world was through skilled labor as a tradesman. Lester Davis left school in sixth grade. He was born poor in an Illinois log cabin. He left home early, finding labor as a migrant farmworker hopping empty boxcars to follow the crops from Texas to the Midwest and back again. When he met and married Gerzella, they settled down in Maroa, Illinois, population 1,000.
When the family moved to Charleston, Ron was two years old. His father was looking for clientele for his new business as a carpenter hand-crafting hardwood floors. He was a man of strong opinions. He hated President Harry Truman, called TV anchor Walter Cronkite a “commie,” and once came after “union folk,” who were demanding he join them, with a four-by-four. He had no patience for the professors who hired him to build their floors. They had book sense but no common sense, he’d say. That was no kind of profession.
Decades later, when Ron grew up and gained notoriety as one of the world’s most brilliant scientific minds, his family in Illinois never quite understood what it was he did. His mother once told Janet, “It sure is a good thing Ronnie doesn’t have to work for a living.”
If anyone had told his family back then that Ron was a genius, they would have laughed out loud. Ron struggled in school early on. He’d missed so much school when he was out sick that he constantly had to play catch-up, and he struggled hard to read. No one knew for many years he had learning disabilities—dyslexia and an auditory processing disorder—that make it difficult for him to process words and letters. Kids teased him. Teachers chastised him. “I always loved learning, but I didn’t like the indifference that most of my teachers had for me,” Ron said later. “They thought I was stupid, and I wasn’t worth their time.”
He believed it when so many told him he was dumb, and he often felt like a misfit.
On Sundays, he’d attend the First Christian Church with his mom and sister and would have to keep an eye on the school bullies in the congregation. Friday nights the family went to basketball games, and Saturday afternoons were matinee showings of Westerns at the Will Rogers movie theater downtown. His father loved hunting, guns, and cars, while Ron liked airplanes and walking in the woods. He hated hunting. His sister Patty sometimes tagged along when their dad and older brother went hunting, but not Ron. He couldn’t stomach it. (He’s the rare medical scientist who has never dissected an animal, unless yeast counts.)
Ron preferred wandering in the woods alone, studying the flora and fauna, and digging for Native American artifacts. He wasn’t into hanging out at the drugstore drinking Cokes after school—that was for the popular crowd. His mom insisted on piano and accordion lessons, but what he really wanted to do was play baseball. He practiced his pitching skills endlessly at home, throwing a homemade ball of paper wrapped up in tape at a small target. Once, finally given a chance to pitch on a real baseball field, he struck out all the “hot shots” with his deadly aim. But instead of rotating him into the game as pitcher, when he even got the chance to play at all, the boys stuck him in the outfield.
When baseball didn’t work out, Ron, who like his dad was good with his hands, turned to making model rockets. He spent hours in the basement mixing up chemicals for fuels that would give him the biggest bang for his buck. When the occasional explosion boomed out, sending smoke streaming from the basement, it only further confirmed for the family that scrawny Ronnie was more than a little “odd.”
“They thought I was a bit nutty,” Ron told me.
Ron’s passion for building rockets had nothing to do with building the body of the rocket itself. That was just a thick paper tube with some fins attached. The fun part was mixing up better and faster rocket fuels. At first, Ron did what most of the other teenage rocketeers were doing back then. He’d get a box of bullets, cut them open, and use the gunpowder inside for propulsion. That worked pretty well for a while, but it wasn’t very powerful, and the neighbors started complaining about the smoke coming from the basement window. The occasional explosion or two didn’t bother his mother so much. She’d shrug her shoulders and say, “Oh, that’s just Ronnie in the basement with his rockets.”
He wanted to figure out a way to avoid explosions if possible, so he did more research and started reading in Popular Mechanics magazine about other chemicals that worked better and safer and still pushed his rockets faster. It was easy back then to buy chemicals like potassium nitrate for a few dimes at the local pharmacy. But then he got bored with that and came up with other, bigger ideas for even more powerful rockets. When he went to the nearby university library to check out chemistry books, but was told, even after he begged and pleaded, that he couldn’t because he was only fourteen, he came up with another plan.
One summer night, Ron grabbed a flashlight and tiptoed out the front door of his house. In the dark, he walked through the quiet streets of Charleston to Eastern Illinois University, his future alma mater. Picking the lock to the university’s Booth Library—Ron always had a knack with mechanical devices—he proceeded to spend hours reading by flashlight. Hiding between the book stacks inside the awe-inspiring Gothic walls of the immense library, he learned how to make the strongest-powered rocket fuels of
all by reading the serious science journals, like the American Chemical Society and others—many of the same journals where he would publish hundreds of his own studies someday. He kept coming back for years.
“That’s where you could learn about the real thing, reading about new research from real scientists,” Ron said. “I started reading a little more about chemistry and realized I shouldn’t be using potassium nitrate for fuel. I should be using things like ammonium perchlorate, but that was too explosive, so they wouldn’t order me that stuff at the local pharmacy.”
So the next day he headed over to the print shop downtown to design his own invoices with the heading “Ronnie Davis Company” and sent orders off to chemical companies in Chicago to get the real stuff. When one day a big rig pulled up to Davis’s small home with a delivery, Ron hightailed it out of the house fast.
“I ran outside and told the delivery man I would make sure my dad got his delivery,” Ron told me, laughing. Then the old professor held up all of his wrinkled fingers and wiggled them in the air. “I loved making rocket fuel and, look, I was good at it. I’ve still got all ten of them.”
With his new access to chemicals, Ron proceeded to experiment with a large number of rocket fuels. The culmination of this was his creation of a very powerful fuel that he was never able to improve upon. Years later, as a researcher attending a meeting of the American Chemical Society, he started chatting with a chemist telling him about how he made this particularly powerful fuel years ago when he was just a kid.
“That’s the fuel that’s used in the Poseidon ballistic missile, and it’s classified!,” the chemist said, dumbfounded. He was referring to a US submarine-launched ballistic missile developed in 1971. “When did you do that?”