Remaining The Writer of Our Own Story At Life’s End

GawandeIn Being Mortal: Medicine and What Matters in the End, Atul Gawande draws attention to an issue that most of us try to avoid: how we will live as our health declines.

As Gawande points out, there is a “prevailing fantasy [] that we can be ageless,” that, in time, medicine can fix what is wrong with us. It’s the same quest for miracles that, as I mentioned in my post on Anthony Doerr’s The Shell Collector, “fuels a $30 billion supplement industry that touts ‘cure all’ claims that are often based more on fiction than fact.”

The prospect of aging and dying is scary. Gawande, a general surgeon, doesn’t sugarcoat it as he lays out the lessons he has learned from his personal and professional experiences. He describes how our bodies fall apart, the accompanying loss of independence, and the double-edged sword of medical treatment in the final stages of life. There are stories from Gawande’s family and from his patients, including a 34-year-old woman with lung cancer and a nonagenarian who, as Gawande quotes in a much-needed moment of comic relief, would “vote for Dracula if he said he was a Democrat.”

I actually laughed a handful times while reading this book, which was otherwise a relentlessly bleak portrayal of how our society handles the needs of our aging population and the terminally ill. Not only are so many of our nursing homes and so-called assisted living facilities “depressingly penitentiary,” as Gawande says, but the medical establishment tasked with guiding us through the final years of our lives is woefully unprepared for the job. The percentage of the population over age 65 has grown (from 2% in 1790 to 14% today), while applications to adult primary care training programs have dropped and applications to higher-paying fields, like plastic surgery, have risen.

As a society, we have prioritized looking young over aging well.

However, Gawande notes signs of progress, indicators that more of us are now able to “remain the writer of our own story” to the very end. More people are dying at home or using hospice care, and there have been increased efforts to address the isolating nature of institutional care. As he concludes, “We’ve begun rejecting the institutionalized version of aging and death, but we’ve not yet established our new norm.”

So, what should this new norm look like? Does it include assisted suicide/death with dignity, which Gawande discusses only briefly in the book? What role does our government play in providing adequate legal, social, and economic support for those of us who are dying and our formal and informal caregivers?

One of the facts Gawande raised about caregivers particularly stood out to me:

Your chances of avoiding the nursing home are directly related to the number of children you have, and, according to what little research has been done, having at least one daughter seems to be crucial to the amount of help you will receive.

Thanks to the persistent stereotype of women as homemakers, the primary alternative to institutionalized care has been for women to care for our aging relatives. Without adequate support, so many struggle to work and raise children while also providing the type of care that enables our aging loved ones to write the ending of their life stories (PDF).

When imagining our “new norm,” let’s aim for one that allows us to end our lives on our own terms while also allowing our caregivers to continue to live theirs.

*See also To Sleep, Perchance to Dream (If You’re Unlucky?) (“There’s no better time of year to read a book about death—and America’s stubborn unpreparedness to care for its aging population— than fall.”)

**The pictures below were taken at Chanticleer, where I read the first 30% of this book.

Another Scene from ChanticleerChanticleer More Scenes Oct 2014

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To Sleep, Perchance to Dream (If You’re Unlucky?)

Fall foliage

There’s no better time of year to read a book about death—and America’s stubborn unpreparedness to care for its aging population— than fall. As John Oliver said in his comedic diatribe on seasonal pumpkin-spiced lattes, which don’t actually have any pumpkin in them:

Just about anything that reminds us of autumn is a better flavor than pumpkin spice… [I’d personally rather drink] ‘a keen awareness of my own mortality’-spiced latte, because that’s what foliage is!

Indeed. As I discussed in From Glaciers to Icebergs, my children mourn the loss of the leaves. Each year, they react to the changing colors with a little less sadness, but the wistfulness this season inspires may never go away completely­—at least it never did for me.

GawandeWith this mindset, while sipping tea (not a pumpkin-spice latte!), I picked up Atul Gawande’s Being Mortal: Medicine and What Matters in the End. I read the first 30% of it at Chanticleer, which is currently displaying a poignant assortment of chlorophyll-depleted leaves.

Next week, I’ll write a more thorough post on this sobering piece of nonfiction. For now, I want to focus on Gawande’s description of how well his medical education prepared him to address the inevitable end of his patients’ lives:

I learned about a lot of things in medical school, but mortality wasn’t one of them… The one time I remember discussing mortality was during an hour we spent on The Death of Ivan Ilyich, Tolstoy’s classic novella…The late-nineteenth-century Russia of Tolstoy’s story seemed harsh and almost primitive to us… [W]e put Ivan Ilyich out of our heads.

It’s interesting that medical schools would use fiction to train future doctors about real-life, a fact that only reminds me of how important it is for writers of this literature to experience and observe the real world themselves before committing those “truths” to paper.

However, as powerful and insightful as literature can be, an hour spent on Tolstoy’s novella is hardly enough to train medical professionals to handle the challenges their aging patients will face (to the extent anyone can be “trained” to handle it well).

This is how Gawande describes the way he and his colleagues confronted death:

The first times, some cry. Some shut down. Some hardly notice. When I saw my first deaths, I was too guarded to cry. But I dreamt about them. I had recurring nightmares in which I’d find my patients’ corpses in my house—in my own bed.

Sometimes I consider myself lucky because I don’t remember my dreams­—particularly when Gawande’s book is among my bedtime reading.

Not all books about death are depressing, though, or so Mr. A.M.B. tells me. The book he was reading at Chanticleer, Irvin Yalom’s Staring at the Sun, a psychiatry book about “overcoming the terror of death,” was far more uplifting. I’ll write more about that next week, too.

Chanticleer October 2014

*In case you’re interested, here’s an article on research into why some people remember dreams better than others do.

*The pictures are from Chanticleer (October 2014).

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Is Literature Disappearing Up It’s Own A-Hole?

Horace Engdahl seems to think so.

In comments to Le Croix, Horace Engdahl (of the Swedish Academy responsible for the Nobel Prize) criticized the “professionalization” of writing through financial support from foundations and educational institutions that allow writers to leave their “day jobs” to devote more time to writing. Noting that it’s particularly a problem for the “western side” of the world, he said:

Even though I understand the temptation, I think it cuts writers off from society, and creates an unhealthy link with institutions… Previously, writers would work as taxi drivers, clerks, secretaries and waiters to make a living. Samuel Beckett and many others lived like this. It was hard – but they fed themselves, from a literary perspective.

If we set aside Engdahl’s hypocrisy — he’s a literary academic linked with an institution — there’s a kernel of truth in his words: experience matters. Real-life experiences inform fiction in ways that may resonate better with readers than fiction unmoored from the realities real people face everyday.

Vonnegut LettersAlong similar lines, Kurt Vonnegut (who, by the way, never won the Nobel Prize for Literature) once wrote to a young writer: “If you want to write fiction, then you must be patient, for you need experiences, and those take time to accumulate.”

A writer’s lack of varied life experiences can lead to over-zealous literary introspection and isolation. As Vonnegut mentioned in an interview with The Paris Review, “It can be tremendously refreshing if the creator of literature has something on his mind other than the history of literature so far. Literature should not disappear up its own asshole, so to speak.

Importantly, a day job isn’t the only way to accumulate meaningful experiences. Kurt Vonnegut’s experiences included being a soldier in World War II and studying chemistry at Cornell and anthropology at U. Chicago, as well as working.

In 1949, during his stint in public relations at General Electric, Vonnegut wrote in a letter to his father:

I sold my first story to Collier’s. … I think I’m on my way. I’ve deposited my first check in a savings account and … if I sell more, will continue to do so until I have the equivalent of one year’s pay at GE. Four more stories will do it nicely, with cash to spare (something we never had before). I will then quit this goddamn nightmare job, and never take another one so long as I live, so help me God.

Vonnegut was one of the lucky ones who was able to quit his job and “never take another one.” As nightmarish as it was, though, it certainly benefited his writing, informing some of his short stories and Player Piano.

What’s impressive is that Vonnegut was able to write at all while balancing so many other demands in life (which, as his letters show us, was challenging for him and his family). The balance is rarely an easy one to pull off. William Faulkner, for example, reportedly wrote portions of his novels while actually on the job as a postmaster at Ole Miss. His brief resignation letter in 1924 is deliciously acerbic: “… I will be damned if I propose to be at the beck and call of every itinerant scoundrel who has two cents to invest in a postage stamp.”

Sadly, there are far too many people who harbor similarly negative feelings about their jobs. In the US, many workers struggle with relatively low paying so-called “day jobs” that seep into the night as well (and that’s if they’re lucky enough to need only one job to make ends meet). The situation is even more dire when we consider that retirement, when workers have supposedly racked up a lifetime of fodder for fiction, is practically a fiction itself.

With these workplace realities, it’s very difficult for anyone but the independently wealthy to pursue creative endeavors—unless, of course, a writer is lucky enough to receive one of those grants that Engdahl thinks is so detrimental.

*The two Vonnegut letters appear in Kurt Vonnegut: Letters (2012); For more of my thoughts on Vonnegut, see Vonnegut’s Literary Reputation: Evidence That American Culture Must Be In Decline.

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Size Doesn’t Matter

For mollusks, that is. ;)

The Shell CollectorShortly after returning from the beach last week, I read Anthony Doerr’s The Shell Collector (published in 2002), a somber collection of eight short stories. The first one, for which the book was named, features a blind shell collector on the coast of Kenya who, much like the sea creatures that hide inside their shells, seeks solitude. His quiet life changes dramatically after a malaria-stricken woman is apparently healed by the venom of a snail in a cone shell. The incident catches the interest of the international media and ignites medical tourism to his patch of sand.

Two reporters from a New York tabloid, both named Jim, eventually show up, and the shell collector shows them what they came to see:

“This is the geography cone,” he said. “It eats fish.”

That eats fish?” one of the Jims asked. “But my pinkie’s bigger.”

“This animal,” said the shell collector, dropping it into his bucket, “has twelve kinds of venom in its teeth. It could paralyze you and drown you right here.”

Don’t underestimate that mollusk, as small as it is. The Shell Collector is a reminder of nature’s indifference and power.

It is also a thoughtful consideration of the ways we harness that power to develop cures, or at a minimum, satisfy our quest for miracles, whether scientifically sound or not. When the shell collector begs journalists to write about the dangers of cones, which have the capacity to kill more often than heal, he concludes the journalists are “more interested in miracles than snails.” It’s the same obsession with miracles that fuels a $30 billion supplement industry that touts “cure all” claims that are often based more on fiction than fact.*

The story also captures our fascination with the ocean and the glimpse it gives us of its depths when the tide pushes a small fraction of it to the shore. The shell collector developed his obsession with shells when, as a child, he traveled from Canada to Florida to visit an ophthalmologist, who introduced him to the ocean for the first time.

For most of us, a visit to the beach isn’t likely to turn our entire “world [into one of] shells, conchology, the phylum Mollusca,” as it did for Doerr’s shell collector, but there is something about sea shells that turns many of us into amateur collectors on a temporary basis (even if it isn’t good for the health of our beaches!).

Last week, my three-year-old daughter could hardly tear her eyes off the sand for fear she would miss the shells she wanted:

Pretty ones with stars and circles on it.”

This is what she came up with:

pretty ones with circles and stars

I admire her imagination. :)

*If you haven’t already seen John Oliver’s response to Dr. Oz’s scientifically-unsound advocacy on behalf of the unregulated supplement industry, I suggest you do.

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Beware: Anonymous Commenters & Those Who Seek To Unmask Them

Curious Case of Elloras Cave

Erotica publisher Ellora’s Cave’s defamation (libel) lawsuit in Ohio state court against Dear Author and the blogger behind it for a September 14th post discussing the publisher’s financial stability and practices is a hot topic on the Internet this week.

I’m not going to comment on the merits of the allegations — I really have no idea about the truth or falsity of the statements on Dear Author — but I will say that this lawsuit is yet another cautionary tale for the so-called “uncredentialed” bloggers out there without a legal team or liability insurance. It’s a reminder about the importance of checking quotes, checking facts, and limiting the vitriol in our posts.

But, of course, there’s only so much a blogger can do to protect herself from a defamation lawsuit. I can only hope that the checks we have in our judicial system to limit frivolous lawsuits — such as a subsequent wrongful use of civil proceedings suit against those who initiate frivolous cases — dissuade overly-sensitive and/or vengeful people from resorting to threats of legal action in an attempt to control what others write about them.

So, bloggers take a risk each and every time we step on our virtual soapbox. Anonymous commenters take a risk too, whatever false sense of security we may feel as a result of our fictitious handles.

According to Dear Author and The Los Angeles Times,** Ellora’s Cave is seeking the real identities of anonymous commenters to Dear Author’s post, which had 220 comments the last time I checked it.

I’m unfamiliar with Ohio law (a very quick search of cases on Lexis revealed nothing relevant), but if it’s anything like Pennsylvania and New Jersey, it’s certainly possible for a plaintiff in a defamation lawsuit to uncover the names of anonymous and pseudonymous commenters through a court order. See, e.g., Dendrite Int’l, Inc. v. Doe, No. 3, 342 N.J. Super. 134 (2001). When deciding whether to expose the identity of anonymous commenters, courts generally balance the harm of the allegedly defamatory speech against the benefits of anonymous speech, which include the encouragement of debate and discussion of sensitive topics.

As I said in Anonymity Doesn’t Only Protect The Trolls (It Protects Nice People Too):

[I]f a comment on Amazon is actually defamatory, the author has the option of suing that commenter under state law. These cases are notoriously difficult for plaintiffs, but not unheard of, and the harmed party could get the identities of pseudonymous or anonymous commenters by court order. See Pilchesky v. Gatelli, 2011 Pa. Super. 3 (2011)(“The court must expressly balance the defendant’s First Amendment rights [to speak anonymously without government intrusion] against the strength of the plaintiff’s prima facie case [that the defendant defamed the plaintiff].”).

Earlier this year, pursuant to a Pennsylvania state court order, the head of a local union managed to uncover the identity of an anonymous commenter who called him “a pedophile.” So, it happens, and maybe Ellora’s Cave will be equally successful in Ohio.

That said, Ellora’s Cave may find that any attempt to expose the identity of these commenters — many of whom are readers and writers of erotica, some of whom who might not want their reading and writing preferences attached to their real names — will further alienate the company from its authors and consumers. That wouldn’t bode well for their future financial stability, whether or not the statements made by Dear Author are true.

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*Ellora’s Cave has demanded that Dear Author remove the allegedly offensive post from the blog. Even if they’re successful, it’ll still be available as an attachment to their Complaint (linked HERE as a PDF). It’s part of the public record. The full docket, including the motion for the Temporary Restraining Order and the accompanying memorandum, is available here.

**The Complaint doesn’t allege anything against “John or Jane Doe” or any other fictitious names. I was relying on Dear Author and the L.A. Times for information on Ellora’s Cave’s request for the identities of anonymous bloggers, but as commenters to this post have been kind enough to point out (thank you!), the request is buried in the conclusion to the memorandum in support of the Temporary Restraining Order. That’s a very strange place to put it (see my thoughts in the comments).

 

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“Sinclair” Is The New “Smith” (Or So It Seems)

Trio at the Outer Banks

Naming is a tough job, whether it’s for real life or for fiction. We agonized over our daughters’ first names, wanting to find names that appropriately conveyed our heritage without increasing the likelihood that they’d be bullied at school. We even put thought into their last name—my name, my husband’s name, or a hyphenate hybrid—because the American tradition of passing on the paternal name wasn’t a given in our household.

Similarly, with Two Lovely Berries, my characters’ names changed throughout the drafts, from Audrey to Aubrey and Alex to Nora, and their last name was “XXXX” for an embarrassingly long time. I ended up settling on the last name “Daley” because it reflected their heritage, but any number of other names would’ve been equally good.

The difficulty I’ve had with naming makes me particularly interested in the names that appear in the books I read. Was it just a fluke, as it was for the Daley twins, or was there a clear purpose behind it, as was the case for Charlotte Brontë’s Lucy Snowe?

Lately, I’ve been wondering about “Sinclair,” a surname of Scottish origin that I’ve come across a few times in popular fiction:

three books with sinclair(1) First, I saw it in The Flight of Gemma Hardy, Margot Livesey’s homage (or ripoff, depending on how you look at it) to Charlotte Brontë’s Jane Eyre. The new Mr. Rochester is Mr. Sinclair, a Scottish landowner.

(2) Then, I came across it again in E. Lockhart’s We Were Liars, narrated by Cadence Sinclair Eastman, the fragile heir to the wealthy Sinclair family of New England.

(3) Finally, I came across it yet again last week in Diann Ducharme’s The Outer Banks House, a historical romance featuring Abigail Sinclair, a Confederate planter’s daughter shortly after the Civil War. The book takes place in North Carolina’s Outer Banks, where I spent last week with my family (see the pictures above and below).

I know more fictional Sinclairs than real-life ones. All of these characters come from socioeconomically advantaged backgrounds, but otherwise they are quite different from each other. I wonder what it was that prompted these authors to choose that last name. Mr. A.M.B. recommended searching the Google Ngram Viewer, which indicates that “Smith” is indeed declining a bit in English-language fiction, but that Sinclair has been mostly steady. Graph here:

Screen Shot 2014-09-29 at 7.05.20 AM (2)_Sinclair

Still, it seems like a trend in the fiction I read, which, as far as I know, Google hasn’t analyzed specifically to sell ads to me. ;)

Has anyone else come across a particular first or last name more often in literature than they have in real life?

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Please Stop Parenting My Children

A.M.B.:

Banned Books Week (Sept. 21-27) is the time of year when: (1) I acknowledge how lucky I am to live in a country with a Constitution that recognizes our right to share and receive information; and (2) I marvel at the arrogance some people have to challenge this right by demanding that public libraries and schools remove certain books from their shelves.

As I wrote last year during this event:

“For people with the audacity to challenge a book, it isn’t enough to tell their own children to refrain from checking out that book. They feel a need to make sure that my children can’t check out that book, too. They attempt to impose their views on me, my children, and everyone else without delineating why the book presents a clear harm to anyone.”

What is it about the exposure to new ideas through books that scares these people so much? It’s a question I explored in my favorite post on this blog, Please Stop Parenting My Children, re-blogged here:

Originally posted on The Misfortune Of Knowing:

picture-for-tango1 (480x640)I am often on the receiving end of unsolicited parenting advice, or even worse, demands that the rules others apply to their children must also apply to mine.

Recently, one parent requested that my child’s school serve juice to none of the children because her child isn’t allowed to have it (for reasons unrelated to life-threatening allergies, for which I would make an exception).

Another parent suggested that all the kindergarteners receive more homework simply because she didn’t feel that the amount proposed by the teacher would be sufficiently challenging for her child. Really? I’m not even sure five-year-olds should have homework at all, much less more of it.

Thankfully, these are just minor annoyances, but they demonstrate a certain attitude that is unfortunately common: What’s best for my family is what’s best for all families.

It’s partly because of this attitude–more pernicious examples of it–that we have…

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