"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
