Tuesday, November 1, 2016

Being Mortal: Atul Gawande, a moped death, and my mother's Alzheimer's

[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.

Thank you to Ian Lind for writing this blog post about the latest death on the UHM campus: http://www.ilind.net/2016/10/31/uh-silent-on-dole-st-fatality-condolences-seem-to-be-in-order/comment-page-1/#comment-216382

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.

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