Ruleboy’s passing

Those who are dead are not dead / They’re just living in my head.
—Coldplay, “42,” Viva La Vida

Sometimes the death of a loved one comes in an instant. But often it takes a slow drain of the calendar to get to the end. In these cases, the family endures while the dying one suffers physical hell mixed with periods of lucidity, joy, even wisdom.

So it was for my brother Marty.

I wrote about Dr. Martin Welsh’s journey with the terminal illness ALS in a 2008 cover story, “Ruleboy lives” (SN&R Feature, February 7, 2008). In it, I described Lou Gehrig’s disease as a cruel and fatal neurological disorder where the brain stays intact while the body slowly ceases to function. Members of my family understood this intellectually at the time, but had no idea emotionally what it really meant.

We came to learn.

Marty, 50 at the time of his diagnosis, chose a “damn the torpedoes” attitude toward his disease in the early years and became a one-man argument for carpe diem. A family physician in nearby Placerville, he remained loyal to his patients and continued to practice medicine as long as he could despite the diagnosis. He volunteered for the poor, gave counsel to the sick. Given the nickname “Ruleboy” early on because of his gift for making order out of chaos, my brother created “rules” for dealing with his disease, like Rule No. 10: “Contemplating courage for the rest of my life is overwhelming, but courage for today is possible.”

A consummate prankster, he proselytized for the essential role humor can play as a companion to those who face life’s boomerangs, including terminal diagnoses. After knowing my brother in childhood as headstrong and brainy, I watched Marty become open, compassionate and formidably present in the years following his diagnosis.

Marty’s personal choice not to extend his life beyond its natural end—as practitioners of Western medicine often advise, through stomach feeding pegs, trachea breathing tubes and the like—garnered him national media attention. As a physician, he’d seen many “bad” deaths and had chosen for himself what he hoped would be a good one. He wrote an essay for the Los Angeles Times in 2009, “100 Things, Leading to a Single Choice,” that was syndicated across the country, and wrapped round the Internet and back again, because of its honest articulation of a view that patients should have the right to choose quality over quantity at the end of their own lives.

But things became more difficult as death neared.

Marty suffered. There was often unimaginable pain, both physical and psychological. What mattered most in his final months wasn’t his legacy as a doctor or his role as an end-of-life opinion leader—what mattered most were the details of his day-to-day existence as one individual human being.

In my Catholic-raised family, I learned to believe that signs come at you all the time if you look for them—a lift of the wind, a gathering storm, the right song lyric at the precise moment it is needed. I admit I have always been susceptible to the idea that fate and circumstance intertwine to make our lives what they are. Earlier in his life, Marty—my scientist brother, the agnostic among us—would have disagreed. But he had moments in the years before his death when he pondered whether there might be something more after he died. At the end, he mostly thought he’d just be gone. But I cannot forget what he once told me: “You can’t create energy and you can’t destroy it. When a person dies, where does that energy go?”

In the month before Marty’s death, and in the presence of Maureen (Marty’s wife), my brother’s best friend, Dr. Mark Kal, asked Marty what he thought would happen after he died. Would it all just end? Or would he proceed to a new place? My brother responded, slowly typing with a hand that could just barely move, and through his computer-operated voice, said: “I’ll be among you.”

That week, in late October before his death, my family gathered close. It was an honor to be present, along with my brothers and sister, as death approached. In Marty’s final hours, Maureen and his two young adult children took up positions and remained immovably, lovingly by his side.

But earlier on that afternoon of October 28, 2010, five hours before his death, I sat alone on a chair by his bedside. I wept, I prayed. In my head, I repeated a chant I’d learned from a Buddhist friend. When Marty stirred, I tried to put him at ease. A hospice nurse came in with Maureen to check on his basic signs; they retreated to an adjacent room to speak privately about what was unfolding.

Suddenly, laid out pale on his bed, where he’d often hallucinate from the painkilling drugs he was being administered, Marty bolted awake, his glassy eyes opened wide. He fixed his gaze on me. He reached for my hand and, to my surprise, grabbed it tight. (The hospice nurse told me later that a sudden act of strength is not uncommon for the dying.)

I was stunned and stood up beside his bed, my right hand firm in his grip, not knowing what would happen next. I told him that I loved him, that we all loved him, and that it was “OK to go.” Suddenly, his eyes locked onto mine, and with physical strength I didn’t understand, he raised my hand, as if in slow motion, to his lips—but for what? Was it a hallucination? A farewell kiss? Or was this some kind of final request? Then he let go of my hand and closed his eyes again.

By 7 p.m., he was gone.

Now, more than a month has passed since his death. I’ve returned to work and am back to my life as if things were normal. But when I’m alone, I come back to the moment when Marty grabbed my hand. Was there something he wanted to tell me from the in-between world? A white light? Or something about love? Or that I must keep a promise?

I still don’t know.

But I miss my brother. And since I am a writer, and curious to a fault, and believe in signs, I am still trying to translate what happened at Marty’s end. And learn what he taught. And remember what he gave. And attempt to go beyond it.