[Photo taken on 11/1/16]
When
I embarked on teaching Atul Gawande's Being Mortal in
my Honors Research class for freshmen, I thought perhaps it was a
stretch. The thesis of the course is that we are often driven by our
experiences to do particular kinds of research. So we're reading a series of memoirs by people who do research. Among them we've read Timothy Denevi's HYPER, the
autobiography of his ADHD, along with a history of the condition;
Ta-Nahisi Coates's Between the World and Me, which
combines journalism about black men killed by the police with a
memoir of his growing up in Baltimore; and Hope Jahren's Lab
Girl, which is about everything, including being a woman
scientist with bipolar disorder who studies the inner lives of trees.
These are all beautifully written, accessible books, but they are
also difficult.
When
I started lobbying my university's administration two years ago to
communicate transparently about deaths of students, faculty and
staff, I was told in several meetings that such information would
prove "disturbing," "cause prurient interest,"
"would wear students out," and so forth. Report of a
suicide, they claimed, would inevitably cause contagion. As I became
an inadvertent expert in the ways that colleges and universities
handle deaths, I realized how many universities have comprehensive
death
protocols (with places to report deaths on-line), and how many of
them have adopted a "best practice" of Student Intervention
Teams or even, as they do at the University of Arizona, a place for
students to go who are worried about a
friend: http://friend2friend.health.arizona.edu/
The University of Northern Iowa (I choose them because they come up
first on google) launched their Intervention Team in
2006: https://www.uni.edu/deanofstudents/sit
The mission of this team, according to their website, is to
"promote
students' physical and mental wellness, a safer campus community, and
the retention of students who can be successful when treatable issues
and behaviors are addressed and managed."
My
father died 24 years ago, almost to this day (November 4, 1992). He
was a religious man who had kept his faith to himself,
because my mother was an aggressive agnostic. As he was dying, he
began to talk about God and his own practice of prayer again (if that is
the word for what he seemed to do for the first time in my knowing
him). He died in the hospital surrounded by neighbors, my mother and
me. After he died, I suggested putting an obituary in the newspaper.
My mother said no. I asked about a service. She refused. I screamed
at her. My father’s sister came from Michigan with a first cousin
of mine I hardly knew. My mother would not speak to them. I performed
an awkward translation. The neighbors had a lunch for us. My mother
did not attend. We went to Arlington National Cemetery to put his
ashes in the columbarium (that had been another fight between her and
me—I won that one). My mother did not come. She went only years
later when my husband, who never met my dad, insisted that we all go.
She started to break down and then turned and walked away. She was
unable to grieve. I half believe her Alzheimer’s emerged out of
this trauma at being unable to release my father or any other of her
losses (there were many in her childhood). My fury was that she would
not let me grieve either, or his friends, some of whom began calling
the hospital when they heard he was dying. She controlled the
information and, so long as no one else knew, she was somehow someway
still holding things together.
I
had no experience with death as a child or a young adult. I had no
experience with old age, save what my parents provided me as they
grew older. I lived in a world of the young or the less old and,
until my father passed, I had never witnessed a death. What a luxury
that might seem to reside exclusively with the living. But also what
a handicap. My mother’s refusal to grieve came back to me as I
talked to this or that administrator who said that reporting on
deaths would only cause more trouble. So what a surprise to find,
when I began to teach Gawande’s book about end of life issues, that
my honors students (18 years olds, almost all of them) were prepared.
This is Hawai’i, after all, where extended families retain
coherence even in this fractured time. My students have grandparents,
either alive or recently deceased. In addition, two of them took a
course a Iolani School on hospice; one of them works at an assisted
living facility; another volunteers at a hospice; yet another works
in a nursing facility that treats the dying. Many of them had already
filled out Advance Health Directives as exercises for classes in high
school. They were more prepared—by far—for our discussions of
death and dying than they were for those on ADHD or on being black in
America or on being a woman scientist.
Yesterday,
I asked my students to talk about differences between individualism
and communitarianism. They are community-oriented, like most local
students in Hawai’i. So is Gawande, who presents Josiah Royce’s
1908 argument against individualism in a positive light. Here’s
Royce: “The selfish we had always with us. But the divine right to
be selfish was never more ingeniously defended.” Here’s Gawande:
“Consider the fact that we care deeply about what happens to the
world after we die. If self-interest were the primary source of
meaning in life, then it wouldn’t matter to people if an hour after
their death everyone they know were to be wiped from the face of the
earth.” (126-7). So Gawande argues that, “The only way death is
not meaningless is to see yourself as part of something greater: a
family, a community, a society” (127). He overstates his argument
here, as his examples of community builders, namely Karen Wilson and
Bill Thomas, are both individualists, capable of seeing past
culture’s myriad inertias. “Culture strangles innovation in the
crib,” Thomas tells Gawande (120). What is culture if not
community? What is the breaking of that culture other than the act of
an individualist? So Thomas, thought to have oppositional disorder as
a child, is the one to figure out who to make life more meaningful
for his nursing home charges. He fills the home with animals and
plants.
My
mother increasingly lost focus after my father died. She was
certainly anxious—she had always been anxious—and depressed. And
then, ten years on, she started to confuse herself with me, my
husband with hers, and to refuse to tell the stories she had loved to
tell. She was probably forgetting them, my husband suggested later.
She began to wander. Once in the middle of the night she knocked on
the neighbors’ door to inform them that the sun had not come up
that day. The extent to which her wandering can be seen as an
embodiment of grief is probably not great; after all, she was losing
her brain, not simply her mind. But I wonder, as I look back, how much of her distress came out of her inability to deal with the
suffering she’d experienced as the child of a broken, alcoholic
family who had had to cut herself off from her past (she thought) in
order to create a future worth living in. She created that, but then
it fell away from her under the stresses of the past. Gawande uses
Ronald Dworkin to argue that, even if we lack independence near the
end, we can hold onto some measure of autonomy. That autonomy amounts
to self-authorship, the authority we retain to write our own
narratives: “All we ask,” writes Gawande, “is to be allowed to
remain the writers of our own story. That story is ever changing.
Over the course of our lives, we may encounter unimaginable
difficulties. Our concerns and desires may shift. But whatever
happens, we want to retain the freedom to shape our lives in ways
consistent with our character and loyalties.” Obsessed with independence from age
five until she descended into Alzheimer’s in her 80s, my
mother lost her authority to that disease. The marvelous story-teller
lost her sentences, then her words, then her voice. There’s
something horrible about that, because it suggests that she lost
meaning. But there’s also something better about it; she survived so long that she even
survived
herself.
One
week ago, there was a fatal moped accident on Dole Street, which runs
through the University’s campus, cutting between the Law and
Engineering Schools. It’s the road on which students trudge back
and forth to the dorms, if they live in dorms. The cross-walk is very
close to the bus stop where I stand at least once a week to catch my
first of two buses home. It’s a very public place. Two
hours after the accident, members of the community received an email
from the Department of Public Safety that Dole was closed due to an
accident. Hours after that, we were informed that the road was again
open. Never were we told by the administration that the accident had
been fatal to the 22-year old moped driver (who turned out not to be
a student, but who knew?), or that counseling was available to
anyone who witnessed the event. A student newspaper reporter I know
told a colleague of mine that he had come upon the accident while the
young man still lay on the road. The students in my Honors class are
writing in their blog posts about the young man who died. I wrote to
the President of UH, who is also currently the interim Chancellor of
Manoa, to ask that he communicate with us; I was not the only one to
do so. I wrote to two members of the Board of Regents, and then
submitted a version of that email to the local newspaper. Here is
what they printed:
UH
should speak out about campus deaths
If you drive down Dole Street,
you will see a memorial to the young man who died on a moped on
Tuesday (“1 dead after mopeds crash near UH Manoa,”
Star-Advertiser, Oct. 26).
That memorial was made by the
young man’s friends.
While the story has been
covered by the media, the University of Hawaii at Manoa has not
uttered a syllable, except to say that Dole was closed and later
re-opened.
Nothing about how students may
have witnessed a fatal accident, nothing to express condolences over
the loss of life on our campus.
This is not unusual. UH-Manoa
never says anything about deaths on campus; it leaves that to the
rumor mill. Students should know they can find counseling if they
were traumatized by events like this one. They should know someone in
administration cares enough to send an email.
The morning after the
accident, we got an email telling us that a moped had been stolen at
one of the dorms.
Susan M. Schultz
Professor of English
University of Hawai’i-Manoa
Silences. I wrote a book of
literary criticism about them. It began as a book about poets who got
writer’s block, and ended as a book about poets who wrote through
the cultural constraints that threatened to silence them. It also led
me into considerations of silence as a spiritual state, one healthier
than the silences that squash. These silences are those that we
experience when we grieve. A friend says her mother termed the year
after her second husband’s death to be the most exciting of her
life. Grief is like that; it’s difficult, but it’s also an
invitation to think about what we find meaningful in this life. If we
can’t grieve, or are not permitted to grieve, we cannot find
meaning. A colleague in another department told me that she’d been
unable to grieve over someone she knew (not well, but she knew her)
who had died on campus because the death was kept quiet. What
protects some people cuts others to shreds. The silences I experience
while meditating can sometimes be difficult, but they are never
meaningless. Perhaps I hold too closely to meaning to be a “good
Buddhist,” whatever that means, but that is my soul’s nutrition.
As Gawande makes clear, death is the not the real problem; it’s our
unwillingness to acknowledge it. In his Epilogue he writes: “We [in
medicine] think our job is to ensure health and survival. But really
it is larger than that. It is to enable well-being. And well-being is
about the reasons one wishes to be alive” (259). Yesterday on NPR’s
Fresh Air, Kerry Egan, who has just written a memoir of her life as a
hospice chaplain, spoke to the happiness she feels among the dying.
Paradoxical, perhaps, but as she said, death is part of life, and
life can be joyful, as well as difficult.
My mother, before she got
Alzheimer’s, was a big talker. She told stories, and she waxed
philosophical about life issues. She also brought sometimes savage
silences along with her; when angry, she wouldn’t speak to me,
sometimes for days. Clearly, there were things she couldn’t say to
herself, either. She couldn’t say that she hurt, or that she
grieved, or that others could do what she could not, if she could
help it. It’s the talking quietly that matters more to me now. To
listen while speaking one’s grief, and to send information that is
tethered to compassion, can be (write it!) the work of institutions. We need to hear others' words, and we need to speak our own.
NOTES:
Books referred to, however obliquely, in the text:
Kerry Egan, On Living, New York: Riverhead Books, 2016.
Atul Gawande, Being Mortal: Medicine and What Matters at the End, New York: Metropolitan Books, 2014.
Susan M. Schultz, A Poetics of Impasse in Modern and Contemporary American Poetry, Tuscaloosa: U of Alabama P, 2005.
---. Dementia Blog, San Diego: Singing Horse Press, 2008.
---. "She's Welcome to Her Disease": Dementia Blog, Vol. 2, Singing Horse Press, 2013.
