Miracle

"One night, sophomore year of college, a few friends and I were out on the town; one thing led to another, and we decided to climb a parked commuter train. Fun, no? I scurried up the ladder on the back, and when I stood up, whammo!  The current arced to my metal wristwatch, entered my arm, and blew down and out my feet. I lost half of an arm and both legs below the knee. I spent a few months recovering in the St Barnabas burn unit in Livingston, NJ. One day, several weeks in to the affair, it began to snow. I was told it was coming down hard and pretty. Around that time, a friend of mine smuggled a snowball into the burn unit for me. I cannot tell you the rapture I felt. The sensation of coldness on my skin, the miracle of it as I watched it melt to water. In that moment, I was amazed enough to be any part of this planet in this universe that whether I lived or died became irrelevant."

 

  B.J. Miller is a pain doctor and the Senior Director and Advocate of Zen Hospice Project.

 "Miller was a sophomore at Princeton when, one Monday night in November 1990, he and two friends went out for drinks and, at around 4 a.m., found themselves ambling toward a convenience store for sandwiches. They decided to climb a commuter train parked at the adjacent rail station, for fun. Miller scaled it first. When he got to the top, electrical current arced out of a piece of equipment into the watch on his wrist. Eleven-thousand volts shot through his left arm and down his legs. When his friends reached him on the roof of the train, smoke was rising from his feet.

Miller remembers none of this. His memories don’t kick in until several days later, when he woke up in the burn unit of St. Barnabas Medical Center, in Livingston, N.J. Thinking he’d resurfaced from a terrible dream, he tried to shamble across his hospital room on the charred crusts of his legs until he used up the slack of his catheter tube and the device tore out of his body. Then, all the pain hit him at once.

 Doctors took each leg just below the knee, one at a time. Then they turned to his arm, which triggered in Miller an even deeper grief. (“Hands do stuff,” he explains. “Your foot is just a stinky, clunky little platform.”) For weeks, the hospital staff considered him close to death. But Miller, in a devastated haze, didn’t know that. He only worried about who he would be when he survived.

For a long time, no visitors were allowed in his hospital room; the burn unit was a sterile environment. But on the morning Miller’s arm was going to be amputated, just below the elbow, a dozen friends and family members packed into a 10-foot-long corridor between the burn unit and the elevator, just to catch a glimpse of him as he was rolled to surgery. “They all dared to show up,” Miller remembers thinking. “They all dared to look at me. They were proving that I was lovable even when I couldn’t see it.” This reassured Miller, as did the example of his mother, Susan, a polio survivor who has used a wheelchair since Miller was a child: She had never seemed diminished. After the operation, when Miller was rolled through the hallway again, he opened his eyes as he passed her and said: “Mom, Mom. Now you and me have more in common.”

 It wasn’t that Miller was suddenly enlightened; internally, he was in turmoil. But in retrospect, he credits himself with doing one thing right: He saw a good way to look at his situation and committed to faking that perspective, hoping that his genuine self might eventually catch up. Miller refused, for example, to let himself believe that his life was extra difficult now, only uniquely difficult, as all lives are. He resolved to think of his suffering as simply a “variation on a theme we all deal with — to be human is really hard,” he says. His life had never felt easy, even as a privileged, able-bodied suburban boy with two adoring parents, but he never felt entitled to any angst; he saw unhappiness as an illegitimate intrusion into the carefree reality he was supposed to inhabit. And don’t we all do that, he realized. Don’t we all treat suffering as a disruption to existence, instead of an inevitable part of it? He wondered what would happen if you could “reincorporate your version of reality, of normalcy, to accommodate suffering.” As a disabled person, he was getting all kinds of signals that he was different and separated from everyone else. But he worked hard to see himself as merely sitting somewhere on a continuum between the man on his deathbed and the woman who misplaced her car keys, to let his accident heighten his connectedness to others, instead of isolating him. This was the only way, he thought, to keep from hating his injuries and, by extension, himself.

Miller returned to Princeton the following year. He had three prosthetics and rode around campus in a golf cart with a rambunctious service dog named Vermont who, in truth, was too much of a misfit to perform any concrete service. Miller had wanted to work in foreign relations, in China; now he started studying art history. He found it to be a good lens through which to keep making sense of his injuries.

 First, there was the discipline’s implicit conviction that every work is shaped by the viewer’s perspective. He remembers looking at slides of ancient sculptures in a dark lecture hall, all of them missing arms or noses or ears, and suddenly recognizing them for what they were: fellow amputees. “We were, as a class, all calling these works monumental, beautiful and important, but we’d never seen them whole,” he says. Time’s effect on these marble bodies — their suffering, really — was understood as part of the art. Medicine didn’t think about bodies this way, Miller realized. Embedded in words like “disability” and “rehabilitation” was a less generous view: “There was an aberrant moment in your life and, with some help, you could get back to what you were, or approximate it.” So, instead of regarding his injuries as something to get over, Miller tried to get into them, to see his new life as its own novel challenge, like traveling through a country whose language he didn’t speak.

This positivity was still mostly aspirational. Miller spent years repulsed by the “chopped meat” where his arm ended and crushed with shame when he noticed people wince or look away. But he slowly became more confident and playful. He replaced the sock-like covering many amputees wear over their arm stumps with an actual sock: first a plain sock, then stripes and argyles. Then, one day he forgot to put on any sock and — just like that — “I was done with it. I was no longer ashamed of my arm.” He became fascinated by architects like Louis Sullivan, who stripped the veneer off their buildings and let the strength of their construction shine through. And suddenly, the standard-issue foam covers he’d been wearing over his prosthetics seemed like a clunky charade — Potemkin legs. The exquisitely engineered artificial limbs they hid were actually pretty interesting, even sexy, made of the same carbon fiber used as a finish on expensive sports cars. “Why not tear that stuff off and delight in what actually is?” Miller recalled thinking. So he did.

 For years Miller collected small, half-formed insights like these. Then, he entered medical school and discovered palliative care, an approach to medicine rooted in similar ideas. He now talks about his recovery as a creative act, “a transformation,” and argues that all suffering offers the same opportunity, even at the end of life, which gradually became his professional focus. “Parts of me died early on,” he said in a recent talk. “And that’s something, one way or another, we can all say. I got to redesign my life around this fact, and I tell you it has been a liberation to realize you can always find a shock of beauty or meaning in what life you have left.”

 The Guest House is a calm, unpretentious space: a large Victorian home with six beds in five bedrooms, vaulted ceilings, slightly shabby furniture and warm, Oriental rugs. There is a large wooden Buddha in the dining room. The kitchen is light-filled and bursting with flowers. There’s always a pot of tea and often freshly baked cookies. And while Zen Hospice has a rotating, 24-hour nursing staff, the tiny nursing station is literally tucked into a kind of cabinet in the hall upstairs; the house, in other words, feels very much like a house, not a hospital.

 You don’t have to spend much time there to realize that the most crucial, and distinctive, piece of the operation is its staff of volunteers. Freed of most medical duties by the nursing staff, the volunteers act almost as existential nurses. They sit with residents and chat, offering their full attention, unencumbered by the turmoil a family member might feel. The volunteers are ordinary people: retired Macy’s executives, social workers, bakers, underemployed millennials or kibitzing empty-nesters. Many are practicing Buddhists. Many are not. (Miller isn’t.) But Buddhism informs their training. There’s an emphasis on accepting suffering, on not getting tripped up by one’s own discomfort around it. “You train people not to run away from hard things, not to run away from the suffering of others,” Miller explained. This liberates residents to feel whatever they’re going to feel in their final days, even to fall apart.

 Miller was suggesting that I’d misunderstood the mission of Zen Hospice. Yes, it’s about wresting death from the one-size-fits-all approach of hospitals, but it’s also about puncturing a competing impulse, the one I was scuffling with now: our need for death to be a hypertranscendent experience. “Most people aren’t having these transformative deathbed moments,” Miller said. “And if you hold that out as a goal, they’re just going to feel like they’re failing.” The truth was, Zen Hospice had done something almost miraculous: It had allowed Sloan and those who loved him to live a succession of relatively ordinary, relatively satisfying present moments together, until Sloan’s share of present moments ran out.

 Miller decided to step down as Zen Hospice’s executive director. He spent months trying to create the right part-time role for himself — something less administrative and managerial that would get him back at people’s bedsides again — but finally resigned. He continued to see patients at U.C.S.F., began co-writing a kind of field guide to dying and started raising seed money for a dream of his, something he’s calling the Center for Dying and Living: a combination “skunk works and design lab,” as he puts it, to dig into more imaginative possibilities for palliative care. He also ramped up his public speaking, and as he traveled around the world, he usually did so wearing Randy Sloan’s favorite, beat up belt, a gift from Sloan’s mother. Only Miller, with his mischievously counterintuitive style of insight, his deep appreciation of one, maybe trite-sounding truth — that the dying are still very much alive and we all are dying — could have thought about Sloan’s life, even the last phase of it, and decided, without hesitation, to wear that belt “for good luck.”

He was still hopelessly busy, still chastened by the volume of good work he saw in front of him but couldn’t do. But it felt right. Miller hadn’t unburdened himself, exactly, but rearranged and rebalanced the weight. He was committing to the parts of himself that felt most meaningful and trying to shake free of all the other, unhelpful expectations. “It’s the same thing I would counsel a patient,” Miller told me. It’s what he had counseled Randy Sloan."

 ~ JON MOOALLEM, NY Times