The Tragedy

Excerpted from an ongoing project to capture the Watsons’ journey by Evan Johnson, a media storyteller interested in the confluence of science and culture. You can find more of his work at ellida.com.

This is the story of a husband and wife—Dennis and Mary Ann Watson. But it starts with the death of a father.

On the afternoon of Oct 22, 2010, Sam Watson’s life ended. He had retired twenty years earlier as an engineer at the Ford Motor Company. As a diagnosis of congestive heart failure played out its final days, he fell and hit his head hard and bloody.

When he was being moved from the hospital back home to pass away under hospice care, his wife Lucille was asked by the hospital staff for permission to deactivate his Implanted Cardioverter-Defibrillator (ICD). But she refused. It was a bad decision that would have cascading consequences.

All the ICD could do now was to discharge shocks to a dying organ. Dennis was alone at his father’s bedside when that process began. Sam convulsed in grotesque agonizing pain.

The son watched while his father’s body rose and fell while his face contorted as if he was experiencing the tortures of the damned. It looked as if he was trying to leap off the bed. When it seemed to be over, it would start again.

Again. And again. And again.

Dennis Watson was a lawyer, a member of Mensa, and the kind of man who ran a marathon in every state. He was also a high-functioning alcoholic in recovery.

He had not had a drink in more than twelve years. In that horrific moment, though, he relapsed. Not with vodka, but with what was on the nearby bathroom counter—the oxycodone and morphine meant for his father’s hospice care.

Dennis’ wife, Mary Ann Watson, was a professor of media studies and an author with a passion for writing. She finishes this chapter of the story this way:

When he was finally able to call me, he sounded sleepy and dazed. “It was pretty damn awful,” he told me. “I’ll tell you about it when I get home.” (Except) he wasn’t able to tell me about it until almost two years later—after he came out of his coma, relearned how to swallow, and tie his shoes, completed eighteen months of grueling rehab, and realized that his life was forever changed by an anoxic brain injury.

Medicine sometimes refers to an injury as an “insult.” It’s a fascinating linguistic oddity—emotional and descriptive in a way that we don’t really expect from medical terminology. Does this usage minimize what has happened, or does it capture it with some profound kind of truth?

Dennis' "insult" resulted in a rare condition known as Delayed Post-Hypoxic Leukoencephalopathy. In simpler terms, he was found unresponsive and twice had to be resuscitated. These events led to a loss of oxygen in his brain, which in turn resulted in the loss of his brain's white matter—the "insulation" around the brain's "wiring" that keeps the signals going in the proper direction and without interruption. When that insulation is gone, information moving from one part of the brain to another happens less consistently, less rapidly, and less reliably.

In even simpler terms: Dennis is a vastly different person than he was the day before the overdose.

Real life has any number of disadvantages compared to, say, films. It has always fascinated me how scenes—or entire stories, for that matter—have the opportunity to come to an end. Something important happens, the shot holds for just the right amount of time, then the screen fades to black. Or it cuts to the next scene—a jump to a new time and place. There is the drama…and then something completely different begins. 

But that, of course, isn’t how real life works. In real life, something important ends, and then we’re all just still there, wondering what to say next. What to do next. Awkwardly trying to navigate the speed with which something profound has shifted back into something ordinary.

Delayed Post-Hypoxic Leukoencephalopathy is something dramatic. Years of nursing homes, rehabilitation, waiting rooms, insurance companies—the onset of a new normal—that’s a little less so.

Mary Ann talks about it this way:

Five years after the tragedy, it was clear that Dennis’s recovery from his brain demyelination wasn’t going to be as full as I had hoped. The huge strides in his physical recovery in the first year brought me an overly optimistic belief that cognitive strides would follow. They didn’t. His deficits in short-term memory, sequencing, and sense of direction remained severely impaired. He was getting more easily irritated. And everything in his behavior seemed to accelerate. He talked and ate—and was brought to anger—way too fast.

So, on the fifth anniversary of my worst nightmare, I made an appointment for Dennis with the Neurology Department at the University of Michigan Hospital. I had lots of questions about what should come next.  But apparently there was no “next.” No follow-up plan. No thought of conducting any more testing.

And I was curious (that may be too polite a term) about why they weren’t more curious about the status of a patient who suffered such a rare neurological condition. What kind of help was available for finding a path with some possibility for improvement? What kinds of experimental treatments might be on the horizon? Could drugs for multiple sclerosis help with the regeneration of myelin? What about stem cell research?

The neurologist agreed to requisition an MRI to see what had changed in five years. But even more importantly, she was also willing to connect us with a researcher who had started doing work using brain stimulation with Alzheimer’s patients.

At our first meeting, Dr. Benjamin Hampstead explained that, though Dennis didn’t have Alzheimer’s, he was a uniquely qualified candidate to participate in the research—a clinical trial on the potential of HD-tDCS. High definition transcranial direct-current stimulation.

So it turns out that, not unlike a film, there was a dramatic jump to the next important thing—the “new frontier of brain science” as Mary Ann calls it.

It’s just that it took five years.