I didn't know what a death rattle
was the first time I saw it. It didn't sound like a rattle at all,
more like a sustained attempt to breathe and spit at the same time,
khhkhhkhhkhhkhhkhh. Tony Pastorini's eyes were wide open, looking
vacantly at the empty hole filled with hallway that was his doorway.
He'd been facing that doorway for weeks now, even though his doctors
had wanted to move him to a hospice long before. They needed his
bed for someone who still had a chance. Though I'd known that his
death was imminent, I still wasn't quite prepared to see him this
way, hovering quietly and helplessly between life and death. He
looked weary and emaciated, with a few lonely strands of hair jutting
out of his otherwise bald pate. Tony's esophageal cancer had metastasized
to his bones, and he had been bedridden for over a month. He appeared
decades older than his fifty-three years and was now in the end
stage. My feeling of shock was itself a surprise to me, as he already
had been quite sick on the day of my first session with him months
earlier. I didn't need to look at his chart to know he was going
to die very soon.
had been in such a good mood only moments before. I'd just been
named the Chief Clinical Fellow in the Psychiatry Service, despite
the fact that I was a Psychologist and not a medical doctor. I felt
proud and honored and a little full of myself even though my schedule
was so difficult. In addition to full-time hours, I was also on
call some evenings and weekends and I had a two-year old son at
home. But I loved my work, and I had strong hopes of a future there
after my fellowship ended. I'll never know whether I was right,
because things changed dramatically soon after this brief visit.
I had been seeing Tony regularly since his admission to the hospital.
He loved to talk about his life, and our sessions often consisted
of long monologues by him, occasionally interspersed with comments
or questions by me. He spoke always in a slow, quiet voice, sometimes
looking at me and sometimes looking off into space. And when I asked
about subjects he didn't want to discuss, like his doctor's suggestion
that he start looking into hospice care, he just looked at me and
waited a few seconds. "You know," he would start while I'd wait
for an answer, "did I ever tell you about my favorite Madame Butterflys?"
Tony was very much an avoider, and, like many people in desperate
situations, he held on to the coping style he knew best. He preferred
to stay in the hospital rather than move anywhere, and simply avoided
the question of why hospice might be more appropriate. And Tony
was perfectly happy to coast in his bed, blithely reminiscing with
familiar faces about the old days, whether those faces seemed to
want him there or not. If he'd paid attention, he might have noticed
that many of them didn't. They wanted to save their beds for the
fighters, and with the unused Ensure cans piling up on his side
table and his ever decreasing weight, he wasn't fighting anymore.
Tony's style was very different from my own, as I tend to go far
in the other direction, looking for trouble before it starts and
taking a proactive role in trying to hold it at bay or meet it head
on. It could be hard sometimes to relate to Tony, for me and for
the rest of his medical team. We were all so busy doing, it could
be hard to understand someone who seemed content just to be. But
I couldn't help noticing how Tony's voice would come alive when
he was reconstructing his life outside the hospital, even when the
subject was painful. Or how his face would brighten when telling
stories of his overprotective brothers, or recalling his great lost
love, a fiancée who had died in a car crash twenty years
before, or describing his favorite paintings and operas. Besides,
my style took its toll too. It takes a lot of mental energy to be
always conscious of the things that can go wrong in a day, the things
you need to do to feel like you're accomplishing something.
Tony's room was low enough that he could hear the bustle of the
noisy narrow street beneath his window, and he liked to fantasize
about the people below, imagining them walking down the block blissfully
unaware of how quickly their time was passing. I imagined they probably
were more aware than Tony thought, since many of them were the doctors,
nurses and families of people like him. On the other hand, some
of those people weren't walking at all, but instead were leaning
against the hospital wall getting in a quick ironic smoke before
putting on their white coats and scrubs and getting back to work.
It felt odd now suddenly to encounter Tony without words. Instead,
all I could hear was the heavy sound of his breathing over the whir
of the machines connected to him. As this was likely the last time
I'd see him, I chose to stay awhile on the off chance that he might
be comforted by my presence. I spoke to him a little, but mostly
I sat by his side, feeling somewhat awed by the encounter. At least
there was one battle he'd won; he clearly wouldn't be going into
any hospice program. Although I'd worked with many terminally ill
patients, I rarely had the chance to say good-bye at the end like
this. A quote came to mind, by Samuel Beckett. "Astride of a grave
and a difficult birth." And Tony certainly looked astride of a grave
at that moment. Then, I thought of all the people trying to live
their lives while fighting to survive their ordeal, and I envisioned
a day when I would be the one lying in a bed just like theirs. What
would I be reminiscing about?
I wondered if Tony sensed my presence, and, if he did, whether
he considered it a comfort or an intrusion. I got up to leave, when
I had a sudden insight that was as powerful as it was ordinary.
Beckett wasn't referring only to people in Tony's situation. He
was describing how we all live our lives, with our mortality hanging
over our heads from the moment we're born. I caught a glimpse of
myself through Tony's envying eyes one of those healthy people
walking down the street, oblivious to the real facts of life; that
it's short and precious and you'd better know what matters to you
now. I suddenly knew where I wanted to be in my life, but it wasn't
the course I'd set for myself.
I thought of the previous weekend when I'd been on call, seeing
to a delirious patient in the hospital in the middle of the night.
Soon after I'd arrived at the hospital, my husband called to tell
me our son was sick. His temperature would soon climb to one hundred
and six. I stayed with my patient until his delirium stabilized,
but spent the next sixty hours shuttling back and forth between
the hospital and our apartment, juggling phone calls to my husband,
our pediatrician and the hospital's team, trying to give my all
to both people in my care. Both ended up feeling fine. I was less
Sitting now beside Tony, I knew that what I wanted most was to
spend more time with my son before his toddlerhood completely passed
me by. I wanted moments that I could reconstruct from my own deathbed
one day, a lot of them. And I also wanted the time to digest the
unarticulated impact my work was having on me. More than that, I
wanted to write about it. Ever since I'd been a child, I'd wanted
to write, but it had been a vague and unfulfilled desire. I knew
I was now having an experience worth sharing, but was unsure what
I had to say about it. I wanted the time to find out what it was
I wanted to express.
I turned my attention back to Tony. He was lying there just as
he had when I first had walked into the room, breathing loudly,
eyes wide open but looking vacant. I leaned over him and touched
his arm slightly as I said good-bye. He never regained consciousness
and died quietly in the middle of the night.
At first, I tried to ignore my inconvenient epiphany. It was clear
what the consequences would be for my status at the hospital if
I tried to cut back my hours. One senior Psychiatrist suggested
that if I couldn't give the three hundred per cent expected of me,
perhaps I ought not to be working there at all. But the vividness
of my experience stayed with me; I cut back at the end of my fellowship
year anyway, and made a connection with a Psychiatrist at the hospital
who wanted to start a new kind of group therapy for cancer patients.
I studied the work of existentialists and scientific researchers,
ultimately designing an existential group therapy and writing the
manual for future research. It was and remains one of the most fulfilling
experiences of my entire career.
But I also reveled in the time I got to spend with my son. I had
to smile when a member of our therapy group told us about how illness
had changed his priorities. "You're not going to find yourself on
your deathbed saying, 'Oh shit, what about that meeting I missed.'
No, you're going to think of all the times you missed being with
the people you love."
I ultimately had a second son, and decided to stay home with my
children for a while, consulting when I had the time. Then I began
writing a book about my experiences at both ends of the life cycle.
And the final catalyst for this sea change was a man whom I
was supposed to be helping, a man who could not even speak and who
was totally unaware of the effect he was having on me.
The famous Psychiatrist Viktor Frankl described the desire for
meaning as a basic biological need, a craving for a sense of belonging
in the world and of having a personal impact on it. He thought there
were three avenues open to us in our search for meaning. The first
is the most common, our work or our art. Not only our jobs, but
what we do, the causes we fight for, the things we make. For Tony,
this avenue had been closed off long before I'd met him. But all
wasn't lost. Another path to meaning in Frankl's view was through
our experiences, how we relate to other people or to beautiful things
in the world; our ability to appreciate what Beckett once called,
"the beauty of the way and the goodness of the wayfarers." Even
in the bowels of a concentration camp, Frankl could appreciate a
luminous sunset over the mountains of Salzburg, and he felt more
whole simply for knowing he could. Just as Tony could still appreciate
his favorite sopranos and the people he loved. And as I could appreciate
his appreciating them, even when he could no longer tell me himself.
And when that ability is also lost to us, Frankl suggested we could
still experience meaning through nothing more than our attitudes
toward the unavoidable things that happen to us. Just being alive,
just being, meant you had an impact.
I especially thought of Tony when I walked my older son to his
pre-school class each day. Before, taking him to school had been
a source of nothing but tension, as we would struggle to make it
out on time, yet another stress-filled chore. I am not a morning
person, and, in addition to getting both of us dressed and out the
door, I had to make sure I had whatever papers, articles, phone
numbers, etc., that I would need afterward at work. Invariably,
I would forget something on the way and would start calculating
whether I had enough time to go back, whether I could substitute
one thing for another, how long separation would take at pre-school.
After I cut back at work, the walk to school became the most treasured
part of my day. I was aware on one level that there were many aspects
of my career that were going to suffer in addition to the financial
burden. I couldn't put these walks on my vitae, I wouldn't publish
articles about them (except perhaps now), wouldn't get promoted
for conducting them well. And those were things that mattered to
me, and still do. I had a particularly vivid taste of the conflict
between my personal and professional lives when I received a call
from a therapist. He had read my journal articles and wanted to
discuss the therapy group he was starting. While we were busy discussing
existential issues like death, hope and meaning, he heard a tiny
voice call out from my end, "Oops! Sorry about your bedspread, Mom.
I forgot to wipe! Could you help?"
But my feelings about my lost status paled in comparison to the
new feeling I had walking arm-in-arm with my boy. To my surprise,
my favorite moments were completely uneventful, the more mundane
the better, like talking about what he'd have for snack or what
color play-doh he'd be making in school that day. We talked about
the different colors of the trees, found shapes in the clouds, and
ate steaming H&H bagels with no yucky stuff in them. Just walking
with him on Broadway made me feel alive. Even when I tried to kiss
him in public and he recoiled in quasi-disgust. Even when he stumped
me by asking if I would ever get dead, and followed it up by asking
if he would get dead too. I answered briefly and almost honestly.
Yes, I told him, one day, like his frog Eric, we would both get
dead. But, I added, I didn't expect that to happen for a long, long
time. "That'll be a bummer," he responded casually. I wasn't satisfied
with my answer though it was the best I could do on the spot.
But I hope to do better than that one day, for both my children.
I hope I can convey to them what I've learned from the people with
whom I've worked. Frankl believed that we could find meaning no
matter what the circumstances, even in Auschwitz, even unto our
last breath. Even lying in our deathbed unaware of life going on
around us, we can make an unexpected difference in someone else's
life. Whether it's through our work, or our art, or the children
we raise, or the example we set simply by living our lives and working
with the cards we're dealt, we make our mark. It's hard to deny
Beckett's point that from the time we're born, every moment of our
living brings us that much closer to our death. But the converse
is also trueevery moment we're dying is also a moment we're