The Center of Redemption

I wrote the following essay in 2018 after visiting Ron Davis and Janet Dafoe at their home in Palo Alto.

Portions of this essay eventually made it into a long feature story for CNN, which appeared on the CNN.com homepage on May 12, 2019. The headline was He pioneered technology that fueled the Human Genome Project. Now his greatest challenge is curing his own son. The piece was accompanied by beautiful photography by Rachel Bujalski. It garnered about half a million page views and was the top 1 or 2 most viewed stories for CNN that day.

But I would argue that some of the most important, beautiful, and meaningful aspects of their story weren’t included in the CNN piece. Here’s that essay, in which I describe my own personal reflections on watching Ron and Janet care for Whitney. In those intimate moments I saw them as Christ figures, washing the feet of the humblest among us. In that image, I think we see the most poignant metaphor for the spirit of God among us, and for the role of love in the ultimate redemption of humanity.

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“The good news is you’re not going to die. The bad news is you’re not going to die.”

That’s what sometimes passes as humor, among those diagnosed with a complex disease called myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS), which often leaves its sufferers in a decades-long purgatory.

Recently I visited Dr. Ron Davis and Dr. Janet Dafoe at their home in Palo Alto, California in what’s essentially become an annual pilgrimage for me since I first came there four years ago while filming Forgotten Plague, a documentary about the illness.

Ron, who led the lab inventing the technology that powered the Human Genome Project, is now perhaps the world’s foremost scientist researching the disease. His and Janet’s son, Whitney, is among the most severely affected by ME/CFS.

Their home is the spiritual epicenter of the disease’s global movement for redemption.

Besides my film crew, others, from the local Palo Alto Weekly up to the BBC, have published stories on the family, but few can intimately comment on the unique spiritual presence you feel when you’re there. As journalists we’re of course bound by the truth—we’re beholden to copy editors and fact-checkers and lawyers who fear that stepping out on a limb might earn our outlet a lawsuit.

But as humans we’re bound to a different standard. It’s a pursuit for truth, but really for meaning, and perhaps some small possibility of transcendence. That’s what attracted me like an electromagnet to their story in 2013 as a filmmaker fresh out of college, and it’s what continually brings me back to their home each year when I’m in town for conferences at Stanford.

A strange, delicate, beautiful, horrifying, exhilarating intensity hangs in the air when I visit.

Searching for context, grasping for an anchor to moor my complex emotions, my mind always shifts to the Holocaust.

That’s the only metaphor that works for me. And sure their son Whitney, with his shaved head and emaciated body cowering silently in his bed, looks like a picture you’d have surely seen in school when you looked at pictures of Auchwitz. Like any good photograph, he’s symbolic of a greater struggle.

I feel, in their home, like nowhere else, a deep gravitas at the magnitude of a situation. We see a severely ill son, whose lips have scarcely uttered a word in half a decade, fed by a tube directly into his stomach. And we see a renowned scientist -- who was shortlisted by The Atlantic among Elon Musk and Jeff Bezos as one the most consequential inventors of our age-- caring for him. Though Ron routinely pulled in tens of millions of dollars for other scientific endeavors, he has struggled for years to get enough federal grant money to study his son’s curse, a widely prevalent and severe disease that many in the medical establishment seem to still find some way to doubt exists at all.

Having led successful careers, Janet and Ron could have rested on the laurels of lives well-spent. Now they lead lives that could by any measure be considered absurd. When Whitney was still capable of sending text messages from inside his room, he summarized their sacrifice, writing, “I’m sorry I’m ruining your golden years.” 

I’ve struggled for years to put them in the proper context, to fully portray what’s happening inside their home to the outside world.

The literary quality of it is unavoidable: it’s something out of an epic, beyond the experience of most mortals.

I was an English major and I learned early on to always be on the lookout for Christ figures. But I don’t know who the Christ figure in this story is. I see it in Ron and in Janet, both of whom have PhDs and spent their careers in and around Stanford.

I see Ron with his head bowed, waiting for his son’s subtle signal that it’s all right to come into the bedroom where he’s spent most of the last decade. I’m watching Janet wipe her son’s face, pull the covers up toward his head, while he lays motionless, oblivious.

Ron takes Whitney’s socks off. He clips his toenails. He washes his feet.

It’s a holy moment. There’s a timeless magnitude here that cannot be faked, only felt. I’m seeing Jesus when he washed his disciples’ feet, the greatest among us stooped over performing the grimiest and simplest of tasks. It’s the radical humility of the master becoming the servant.

But of course, the Zen-like Whitney has committed no sin to deserve this. Is he the Christ figure? He knows that his suffering matters because every day he’s nailed up on the cross of his bed, he’s helping bring millions of other patients closer to salvation. Underneath his silent face, a mind and a soul lives a vivid, disciplined life knowing his ME/CFS carries universality, and through the power of his suffering and his father’s grace, he has some potential to deliver millions from suffering.

Years ago, Whitney permitted us to film him, though he knew the very act of a film crew setting foot in his room might make him crash even worse, putting him in a downward spiral for weeks. His sister Ashley had told him he’d make a great poster child for the disease, and if he agreed to be photographed or filmed, then she’d dedicate her own life to fundraising for scientific research. They both knew their father was unique among all living scientists in his ability to coordinate the discovery of a cure. Whitney’s suffering, as horrific and grotesque as it was, could be given a greater meaning.

That meaning has injected itself into my own DNA. I’m addicted to coming back year after year. Nowhere else can you find such pure and powerful hope for a better future combined with the crying heart of humanity that needs it most.

And that’s why I’m watching. That’s why I’m here with Janet. There’s a disciplined, memorized intentionality behind it that reminds me of Catholics performing the Stations of the Cross. To me, I’m seeing a unique and novel ritual. But for Janet, this is every day of her life for the better part of a decade.

After thirty minutes of watching, I begin to turn away, to sit down. It’s tiring. But Janet turns, and asks, “What are you doing? Don’t you want to watch?”

And I know in that moment that the most important thing I can do is to simply bear witness. I stand back up to watch.

Six times each day, every day, they perform this ritual, silently, dutifully, shut off from the gaze of the world.

They start around 2:30 pm each day, first hooking up Whitney’s IV. On the next entry into his room, they hook up the pump for the j-tube that will send nutrients directly into Whitney’s stomach for the next five hours. On the third visit, they wash and clean the urinals next to his bed. Next they come back in to put the urinals on Whitney’s stomach, for when he’s ready to use them. On the last visit in, often around 2:30 am, they’ll put ice on Whitney’s stomach to help soothe his excruciating digestive pains.

Later Janet tells me how she sometimes waits for hours outside Whitney’s room peering through a keyhole to see whether Whitney has assumed a position in bed indicating it’s all right to come in. With words no longer an option, She and Ron now interpret volumes from Whitney’s varied postures. They can’t come in unannounced, lest they cause Whitney to crash even further. He doesn’t have a lot farther down that he can go, of course. I mean this, literally.

Those lengthy waits sitting just outside her son’s room are the time Janet spends tweeting, often announcing to the world the latest glimmer of hope from her husband’s lab. But she also spends that time reading. She says she’s read many great works of American history and biography, of the Founding Fathers, and the presidents, while waiting for her son. And recently she’s been reading a lot about World War II, especially nearly two dozen books on the Holocaust.

I’m not surprised her mind is fixated on the Holocaust, consciously or unconsciously. My mind always is when I’m there.

I asked her if she read Man’s Search for Meaning. She says she, too, has read it. The book is the story of a Jewish psychiatrist, Victor Frankl, taken away to Auschwitz. He has a theory about the meaning of life, and feels that if his ideas can withstand the test of the harshest conditions on earth, then perhaps they are true.

And unlike many others in the concentration camp, Frankl survives, in part, because he felt he had some greater meaning to live for. If you don’t have meaning you’re less likely to survive.

I read Frankl’s book after I got done directing Forgotten Plague. After traveling the country and seeing dozens of patients severely ill from a disease with no cure, I had my own crisis of meaning. I’d taken on the pain of all the people we’d filmed. As a journalist who also has the illness—albeit in a much milder flavor--the stories fused with my soul, and I felt my fate was interwoven with everyone else’s.

What haunted me most was my memory of seeing Whitney’s pill bottles lined up on the family’s kitchen counter, and noting that most of what he was taking were pills I take every day. They work for me. But Whitney is wasting away, unable to eat solid food, unable to speak, unable to leave his bed.

It’s hard for me, but obviously exponentially harder for Janet. She told me it’s the most difficult thing she’s done in life “by a factor of thousands.” But one animating truth guides her. “He’s my son. I just love him.”

Janet receives messages from patients all over the world—they are inspired by her husband, horrified by her son. She’s come to feel like a mother to all patients, many of whom are suicidal, a rational response to a life spent hovering just above death, but with no possibility of that ultimate reprieve.

However many sufferers write that Whitney is their north star, that if he can go on living through hell, then their lesser suffering, though intense, must be endurable too.

“He’s saving lives,” Janet says, “Just by lying there.”

Every few months, Whitney’s mental fog lifts when they have to administer the drug Ativan to help with a routine procedure. And though he can’t talk he gesticulates, in his own sign language. Janet posted on Facebook that Whitney signed to her and Ron that he was going downhill and didn’t have much time left. She said he asked his father if he got cured, did it mean that all the millions around the world—he gestured a globe with his hands—would be cured too?

Ron nodded.

Then Whitney made rapid punching motions—like a boxer—indicating he’d keep fighting. “Then he laid back down, tears streaming down his face,” she wrote, gesturing to his parents it was time for them to leave.

And like that the fog descended again and Whitney motioned for them to leave—but the thousands of the sick connected to Janet online later read her dispatch, and could tell that the process of the meek inheriting the earth was as real as ever.