Thursday, July 30, 2015

The Good Death, February 16, 2016.



On Monday I submitted my review of copy edits for The Good Death: An Exploration of Dying in America, a book I've been researching and writing for what feels like forever but has been, by the calendar, seven years. That's a distinctly significant period of time. The seven year itch, the signs of revelation, the completion of a cycle which initiates renewal (a snake swallowing its tale), the number of the virtues, an oath. The chakras, the pillars of wisdom, the wonders of the world, the visible colors of the rainbow. 
The Good Death will soon be something you and I can hold in our hands. So for now, that's the richness of seven years for me, a driving curiosity, pursued in the presence of countless amazing people and ideas, transformed into a physical object.




Saturday, February 7, 2015

Remembering Jeb Bush's Role in the Terri Schiavo Case

With so much talk about Florida Governor Jeb Bush running for president and with the anniversary of Terri Schiavo's death approaching next month, I'm posting an excerpt from a talk I gave at Colgate University last year which outlines Bush's role in the case:

Like Karen Ann Quinlan and Nancy Cruzan, Schiavo was unconscious and had stopped breathing for more than four minutes, a duration of time that doctors roughly consider the window from within which patients may recover. Her husband had found her on the floor of their Florida home in February of 1990 and called 911. When paramedics arrived, she was resuscitated and rushed to a nearby hospital where eventually, she was given a feeding tube. For years Terri’s husband and her family, the Schindlers, attended her, hoping that therapy would restore consciousness. But ultimately, Michael accepted that his wife would not recover. Her family, Roman Catholics, did not. They became estranged when Michael sought to legally have Terri’s feeding tube removed.

Michael received permission from a district judge in 2001 to remove the tube after providing witnesses and evidence that she would not have wanted to be kept alive. It was removed, but two days later the Schindler’s appealed the decision, saying that “Terri was a devout Roman Catholic who would not wish to violate the Church's teachings on euthanasia by refusing nutrition and hydration.” The feeding tube was reinstated. Over the course of the next few years, the dramatic removal and reinsertion played out several times with the public, district judges, state and federal legislators, and activists of every stripe weighing in on the state of Schiavo’s life and health.

The Schindler’s recruited Randall Terry, an anti-abortion activist who had founded Operation Rescue and knew how to get publicity, to take up their cause. Randall Terry arranged vigils and protests outside the hospice where Terri Schiavo was a patient and put pressure on the Florida governor, Jeb Bush, an anti-abortion Republican. Writes Colby, the Cruzan’s lawyer, “In Tallahassee, the Florida state capital, email and phone calls began to pour in with messages from people pleading for Terri Schiavo’s life.” Later the governor said he received 160,000 messages. Governor Bush called a special legislative session the night of Sunday, October 19, 2003, and “Terri’s Law,” which overrode the courts and ordered the tube again be reinstated, was passed unanimously the following afternoon. Two hours later the hospice was served with an order to reinstate the tube. Terri Schiavo’s long-time doctor chose to resign rather than do so; another doctor at the facility performed the reinsertion. 

In 2004, the Florida Supreme Court overturned “Terri’s Law,” ruling it unconstitutional. Governor Bush tried to appeal but the US Supreme Court refused to hear the case. A new date was set for final removal by the Florida District Judge George Greer: March 18 at 1 pm. With no remaining options, the Schindlers met with the governor and other important officials. They enlisted the support of both key anti-abortion legislators and an effort was headed by House Majority Leader Tom Delay to “pass a bill that would move the Schiavo case to federal courts.” Although most legislators had headed home for the Easter break, those who remained decided in the early morning hours of Friday, March 18 to issue subpoenas “to trigger federal protection for Terri Schiavo,” but one week later, Florida Judge Greer called a hearing to tell federal legislators they had no jurisdiction in the case. “My order will stand,” he told them. 

An hour later, Terri Schiavo’s feeding tube was again removed. Legislators, writes Colby, called a “rare Saturday night session of the US Senate that was attended by only three senators, Senate Majority Leader, Bill Frist, Mel Martinez of Florida, and John Warner of Virginia. Senator Frist said, ‘Under the legislation we will soon consider, Terri Schiavo will have another chance.’” The federal law, titled “For the relief of the parents of Theresa Marie Schiavo,” was brought before emergency sessions in both the house and senate the following day, Palm Sunday. The senate passed the bill, which became known as the Palm Sunday Compromise, unanimously -- but the house was blocked by eight Democrats who challenged it on weekend rules, so house leaders waited until after midnight to pass it. President George W. Bush, informed of the bill’s progress, curtailed his vacation and returned to Washington that day to sign it. 

In the US House Sunday night, Tom Delay stood to say, “A young woman in Florida is being dehydrated and starved to death. For 58 long hours her mouth has been parched and her hunger pains have been throbbing... She is alive. She is still one of us. And this cannot stand.” The bill was passed at 12:41 am and President Bush signed it into law at 1:11 am. 


But repeatedly, federal and Florida district judges refused to recognize the bill. New appeals were submitted and turned down. New bills, hastily written and frantically debated, failed to pass in Florida. Governor Bush threatened to use the Department of Child and Families to take custody of Schiavo by order. David Gibbs, the Schindler’s lawyer and President of the Christian Law Association called Michael Schiavo a “murderer.” More motions were submitted and denied. Protesters called hospice workers “Nazis,” “cowards” and “murderers.” At the Schindler’s request Reverend Jesse Jackson flew to Florida. Father Frank Pavone, National Director of Priests for Life and President of the National Pro-Life Religious Council accompanied Terri’s siblings on their last visit to their sister’s room. Terri Schiavo died on March 31st, 13 days after her feeding tube was removed.

Monday, December 22, 2014

Katharine Hayhoe and God's Fevered Creation.

For Guernica's final special issue of 2014, Religion in America, I interviewed climate scientologist Katharine Hayhoe. Here's a clip, below, or you can read the entire interview here.


Guernica: Actor Don Cheadle says in Years of Living Dangerously, before meeting you, “I’ve never heard of anyone like Katharine Hayhoe.” In popular culture we don’t often encounter someone who is both a scientist and a Christian. It’s like you’re a unicorn.
Katharine Hayhoe: It’s a common perception that science and religion are mutually exclusive. But there are many scientists who would consider themselves to be spiritual people. Not only that, but in the case of climate change—a scientific issue with strong moral implications and difficult decisions to be made—it’s essential to connect the science to our values. And for many of us, our values come from our faith.
For Christians, doing something about climate change is about living out our faith—caring for those who need help, our neighbors here at home or on the other side of the world, and taking responsibility for this planet that God created and entrusted to us. My faith tells me that God does want people to understand climate change and do something about it. And that is a very freeing thought: I don’t have to change the world all by myself, I just need to partner in the work God wants us to do.

Sunday, October 12, 2014

Upcoming Events, October 2014

I'll be reading at two events this month. Please come say hi!

Monday, October 13
Greenlight Books, 686 Fulton Street, Brooklyn
Launch of the Guernica magazine Annual
With readings by Nick Flynn, Rachel Riederer, Saeed Jones, Ann Neumann
And a Q&A with Guernica Editor in Chief Michael Archer
7:30 pm

Sunday, October 26
Unnameable Books, 600 Vanderbilt Avenue, Brooklyn
With readings by Dania Rajendra, Nathan Schneider and Ann Neumann*
Hosted by Robert Eshelman
6 pm
*I'll be reading from my forthcoming book, to be published by Beacon Press next year

Sunday, July 13, 2014

Death to Preserved Land by a Thousand Dirty Pipelines

I'm tickled to have an Op-Ed in the New York Times Sunday Review section this morning about something that's dear to me: the hollow I grew up in. Right now a natural gas transporter, Williams, is threatening to run a pipeline through it.

Lots of folks are asking what they can do to help. Here are some options:

Leave a comment at FERC, docket PF 14-8: https://ferconline.ferc.gov/QuickComment.aspx

Write a love letter to PA Governor Tom "Frackers own me" Corbett or call him at 717.787.2500: http://www.portal.state.pa.us/portal/server.pt?open=514&objID=1072219&parentname=ObjMgr&parentid=11&mode=2

Share this far and wide. We're all getting fracked. 

http://www.nytimes.com/2014/07/13/opinion/sunday/a-pipeline-threatens-our-family-land.html?ref=opinion&_r=0

Wednesday, June 4, 2014

On the Blog Train.

A couple of writer friends have tagged me on what they're calling a blog train, a series of questions about what projects and processes we're engaged with at the moment. I'm a little late to this but I have a good excuse: I just got back from a month in the south of India and, well, jet lag is for real. But Brook Wilensky-Lanford and Mary Valle are rock stars as far as I'm concerned. Some calls for participation shouldn't be ignored. Besides, its always helpful to think about how I organize and describe my own work--and here's a chance to engage in that exercise. Through the dissipating fog I hop on the blog train.

What am I working on?

A Book! With a capital B. Next year Beacon Press will publish a project that I've been researching for about six years, SITTING VIGIL: IN SEARCH OF A GOOD DEATH. I've known Amy Caldwell there for a few years and I'm delighted to work with her. The books starts with the question: Why do so few Americans die the way they want to? For the past 50 years, medicine, culture, and law have made it increasingly difficult to know what's coming and how to plan for it. It's my first book and the manuscript is due this fall so I'm excited to be diving deep into the writing phase.

I also write a monthly column for The Revealer, a publication of The Center for Religion and Media at New York University, called "The Patient Body." Because the material in the column overlaps with much of the book, I get to think freely, to test ideas, to ask questions without requiring that they fit into a larger structure. It's good fun and the editor there, Kali Handelman, has been super smart about making me go deeper, think harder, explain more clearly. And I'm also happy to be a contributing nonfiction editor at Guernica magazine, although to be honest, they're getting more writing out of me right now than editing because of my book deadline. These things are great for book procrastination, even as I use the book to procrastinate them! I'm always cheating on one project with another and I think that keeps me from getting stale. I recently started a series of tragic short stories--about suicides, car accidents, runaway trains--which have turned out to be incredibly enjoyable.

How does my work/writing differ from others in its genre? 

Re: SITTING VIGIL: Most books about the social and cultural aspects of death are clinical and academic or sentimental. While there are some really great exceptions (Sherwin Nuland's 1995 bestseller How We Die or, say, Jessica Mitford's classic 1963 take down of the funeral industry The American Way of Death), I find a lot of the books out there to be informative and great for research but not necessarily a good read. I first thought of this project as a memoir; the experience of caring for my father until he died in 2005 rocked me and, as someone in my late thirties, I wanted to know why I was so unprepared for it. My approach from the beginning has been fueled by intense investigative curiosity. I became a hospice volunteer in order to describe the dying process first hand. I spend a lot of time with doctors, bioethicists, nurses, preachers, home health aids, lawyers and of course people who are dying and their families. Because I started out writing poetry, I think I'll always begin with personal experience--told with as much detail as I can muster--but I really like the big hard questions, often those that come from tearing apart terms that go unexamined even as they are used as placeholders in our conversations: hope, dignity, a good death. And I'm scrappy; I like to dabble in theory and policy, but ground those knowledges and facts in the stories my patients tell me. I try to break down the big words and ideas into concrete details, to ask the questions we often consider too impolite: What is love, really? What is care? Quality of life? Choice? I figured the best way to examine how Americans die was to go out there and watch them die, to dispense with the euphemisms, to pull back the pale blue hospital curtains, to ask patients what they were physically feeling, seeing, fearing, and expecting. And I'm wedding those narratives to deep reporting. SITTING VIGIL is story driven and it's incredibly personal, even as it comes out of years of research. What I hope is that the writing is creative and engaging even as the social justice aspects of death and dying are.

Why do I write what I do?

The simple answer is I write about death and dying because I'm fascinated and often perplexed by how individuals reckon with it. I don't think it's false humility for me to say that it's easy to write about dying; death is inherently profound and dramatic. Sure, losing patient after patient, always grieving takes a toll--I'm constantly in awe of hospice workers, doctors and nurses--but I've never had to explain why this project matters or why we should care about how we die. It's impossible to write about someone's death and the challenges they've encountered without getting emotionally involved, without encountering pain and struggle, without being schooled on empathy and sympathy all the time. In an environment where decisions are so limited and poignant, I have been taught by my patients and interviewees what setting priorities is all about. I joke that my next book will be about puppies and butterflies but I doubt it. I like the weight of this subject. And I have to admit that it's a subject, like religion, that makes people squirm. I like that.

How does my writing process work?

I'm terribly neat and organized, I think because I'm afraid of losing details, afraid that I won't recall an experience or emotion. I'm kind of flighty and I don't want to miss anything important so I can't go anywhere without a notebook. That wealth of material often leads to culling details or incidents that later, in context or on the page, lose their vitality or become redundant. I've got a building pile of clippings, notes, and articles for each chapter and because I've been working on this project for so long, some of them have had to shift around until they found a home. But I did, at least for this project, have to start with a fairly refined outline. Of course, I'm always proving myself wrong, always rearranging things, either in the process of writing (which is definitely the best way of thinking/explaining/discovering for me) or with new research. Because I have this kind of organization and structure, I'm able to experiment with how to best juxtapose different issues and contexts. For me the adage is true: form is liberating.

Right now, with a deadline looming, my schedule is really structured. I work at home and control my schedule and environment as much as possible. When I'm cranking, I'm pretty much 9 to 5. I don't get online till noon, I have daily and weekly goals. And I'm happy like a kid when I meet them. I've never been good on limited sleep so I try to have strict wake and bed times. I'm kind of like an old lady that way. And I have to edit on paper. If I try to read my own stuff online, I get lost. So I have to print out a draft, spread it out on my dining room table or the floor. Then I can see it.

I'm lucky to have a great writing community, from the talented and astute members of my writing group to fellow travelers who are engaged with death and dying, to my agent, Laurie Abkemeier, who has turned out to be a brilliant reader of my work. Often, I find myself writing something and running it through a couple of lenses: a bioethicist, a great long-form journalist, my sister, an academic friend. It's not that I'm trying to write for everybody (although I hope what I am doing is broadly engaging) but that I want to be sure I'm thinking in the round rather than coming at anything with a destination already in mind. Doing so keeps me from making assumptions, and that's the purpose, right? To see and record, to describe and explain as honestly as I can.

Tuesday, June 3, 2014

Spring Sprung.

I just got back from India which means I'm constantly groggy with jet lag. But it's been a tremendous spring with lots of new writing and events. It helps to sum it all up; proof that I've been happily busy. 

The best and brightest news is that the book I've been researching for about 6 years will... become a book! SITTING VIGIL: IN SEARCH OF A GOOD DEATH will be published by Beacon Press in 2015. No small thanks goes to my brilliant agent, Laurie Abkemeier, for finding me, for believing in this project from the beginning, and for holding my hand through the process. I'm so tickled. And I'm so on lock-down. The deadline for the manuscript is this fall.

A host of other little successes and articles have kept me busy. Here are some links:

My time in India straddled the conclusion of the national election in which the Congress party, in power almost uninterruptedly since the time of Indian independence in 1947, was defeated by the BJP. The new Prime Minister, Modi, represents an extraordinary overthrow of political philosophy. I wrote about Modi, and an Indian yoga guru, Baba Ramdev, who aided Modi's election, for Killing the Buddha, "Whose 'India First'?".

As a new contributing nonfiction editor at the online literary magazine, Guernica, I was lucky enough to help edit an article by academic Wendy Pearlman on the Syrian uprising and how it has affected individual lives there. Read Pearlman's "Fathers of Revolution" when you can. It's stunning.

In April I got to read, along with Alia Malek and Erika Anderson, at a Big Umbrella/Guernica sponsored event. It was fantastic fun--even though I was nervous to be reading... about kidneys. I read "What's a Kidney Worth?" one of the earlier installments of my column at The Revealer, a publication of The Center for Religion and Media at New York University. Writing the monthly "The Patient Body" column has been pure joy. And it's ongoing so keep an eye on The Revealer if "issues at the intersection of religion and media" are your thing.

I wrote two book reviews for Bookforum this spring. The first (FEB/MAR 2014) was of Megan Hustad's More than Conquerors: A Memoir of Lost Arguments and the second (APR/MAY 2014) was of Charles Marsh's Strange Glory: A Life of Dietrich Bonhoeffer. If you don't subscribe to Bookforum, well, you should. Both, so far, are only in print.

On April 3 I was honored to speak at Colgate University's Lambert Institute for Civic and Global Affairs. Hamilton, New York, is so charming and the drive up and back were so gorgeous. But the best part was meeting faculty and students who were perfect, curious and insightful hosts.

For Guernica's special issue on the American South in March, I wrote about the increasingly Southern practice of execution. You should check out the entire issue, which will soon become an ebook, here.

In February I got to write about marijuana and hospice for OnFaith. Here's a little excerpt: "The ironies of how we regulate moral behavior were not lost on me. Nor would they have been lost on most anyone who happened to observe our smoking through the window of her luxurious apartment on Central Park West."

Also in February I was asked to present a talk for the Columbia University Seminar on Death. The conversation was so lively and smart that I came away with insights that continue to inform my work.

A special issue on End of Life was printed by the New York Law School Review in February. You can read my contribution, "The Limits of Autonomy: Force-Feedings in Catholic Hospitals and Prisons" online.

Now on to summer!