Category: Posts

The Bullies Won… Again

January 10th, 2011 — 2:05pm

In a hugely disappointing move, the Obama administration has abruptly backed away from supporting a frank and open discussion about end-of-life planning between doctors and their elderly patients.

Only three days after implementing a new regulation that provided Medicare coverage for doctors to talk to their patients about what kind of care they wanted at the end of their lives, the White House announced on Wednesday that they were reversing it.

Why the short order flip-flop? Why disappoint the thousands of hospice workers, geriatricians, doctors, caregivers and seniors who had been working towards and supporting this kind of coverage, some of them for years?

Simple: Obama buckled to the bullies. As soon as the loud and vociferous opponents of end-of-life choice began their usual scare mongering and name-calling, he stood down. Instead of sticking to his principles, he chose the politically expedient response and caved…. again.

Yep, because these are the exact same folks who hijacked the healthcare reform debate in 2009 by telling us that Obamacare would result in “death panels” and that Big Government would decide whether or not your granny got to live or die. The same rabid conservatives and “Got you in our crosshairs” Palin supporters who managed to wrest our president’s lunch money away from him two years ago — only this time they just had to yell a little and he handed it right over.

The news is a devastating blow to anyone whose work involves helping people make decisions about end-of-life care. And it will mean millions of the sick and elderly will enter the final chapter of their lives woefully unprepared.

Only 20 or 30 percent of patients at the most have an advance directive in place in this country. The new regulation would have increased that number substantially. It would also have empowered dying patients to think about and choose the kind of death they wanted in advance. Instead, most of us will find ourselves at the mercy of a healthcare system that knows how to keep throwing drugs and procedures at us — insisting on unnecessary “heroic measures” right up to our final painful breath — but isn’t very good at helping us find comfort and peace at the end.

The implications of this cowardly backing down for our healthcare system and our aging population are devastating. It also reveals a most disappointing truth: our political system is being taken over by bullies and the leaders we elected with such high hopes to stand up to them are letting them do it.

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Baby Boomers Are Bummin’

December 20th, 2010 — 3:51pm

Okay, stop the presses, this just in: Baby boomers are in a funk!

According to a survey by the Pew Research Center, forty-five to sixty-five year olds are not feeling the love. In fact, 80 percent of us are pessimistic about the way things are going in this country.

Although the old folks – the really old folks, those over sixty-five — aren’t feeling all that sunny either (76 percent of them don’t like the way things are going) somehow this information about boomers is breaking news.

Am I the only baby boomer who is sick of this annoying cultural obsession with examining and defining who we are and what we feel? Why this endless need to keep ascribing vaguely defined and contradictory attributes to a group of over seventy-five million people born between the ages of 45 and 64? And as someone on the young end of the boom, it annoys me that boomers are forever linked with the 1960’s hippie Woodstock thing, a party that I was waaaay too young to attend.

But here are a few other random tidbits about “us” that Pew thought fit to include in their study:

1. Seven out of ten boomers say the main purpose of marriage is mutual happiness and fulfillment, rather than raising a child.

2. When it comes to the idea of alternative lifestyles, boomers are less accepting than 18 to 20 year-olds are of same-sex couples raising children and of unmarried couples cohabiting.

3. Boomers are more likely to accept divorce as a solution to marriage woes; about two-thirds of them say divorce is better than staying in an unhappy marriage.

Is any of this illuminating? Let’s imagine for a moment the prototypical boomer or boomerette based on this information. They demand fulfillment in their marriage, although not necessarily children, and they don’t support that same experience for cohabitating or gay couples with children. Oh, and when they stop feeling fulfilled, they get divorced, no problemo.

Okay, not only does that not sound like anyone I know, it sounds really unattractive. And that’s the problem with the image of boomers that emerges from all these “studies,” not to mention the legion of books and articles written about us. Not only is it vague to the point of meaninglessness — the demographic is simply too enormous — there is often a negative subtext. Remember how Bill Clinton was always being referred to as the “first baby boomer president” and how much of that discussion centered on whether or not he had smoked pot?

Basically if we’re not being accused of being tree-hugging hippies who destroyed the moral fabric of the country, we’re being accused of being greedy capitalists who haven’t lived up to our youthful ideals.

And now, according to Pew, we’re also whiny malcontents. No offense to all you boomers out there, but it kind of makes me wish I’d been born five years later.

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Overspending: A Tale of Christmas Past

December 5th, 2010 — 3:36pm

It may be hard to find the silver lining in the current economic downturn, but the recession has given me at least one important gift: It has cured me of my shameful habit of overspending at Christmas.
Read more at AOL’s Daily Finance:

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Memories, Lies and Sex Abuse: A Cautionary Tale

October 19th, 2010 — 7:21pm

Having known a number of incest survivors over the years, including a close friend who suffered from horrific abuse as a child, I find the notion that women might fabricate their stories of sexual abuse both unbelievable and offensive. In fact, I have always assumed that anyone who doubted these stories was simply not educated about the prevalence of incest. So what to make of Meredith Maran’s book about falsely accusing her father of sexually molesting her as a child: My Lie: A True Story of False Memory?

A journalist and author of several critically acclaimed books, Maran writes about how she became convinced that her father had molested her, despite no specific memories of abuse. While she did not take any legal action, the repercussions of her accusations were profound: family members regarded her father with suspicion, his second wife nearly left him, and for years neither she nor her two sons saw or spoke to him. Although Maran eventually realized that the abuse never happened and apologized, close to ten years had passed and her father was by then in the early stages of Alzheimer’s.

Having met Maran and read her previous books, I believe her to be both intelligent and emotionally astute. So, how did she go so far off the deep end? And if someone as smart and perceptive as Maran could be so dramatically led astray how many other “survivors” might be similarly deluded? Even more troubling: How is her retraction going to affect the real victims of incest? (Just needing to add the word “real” here makes me cringe.) Doesn’t this public apologia empower the perpetrators by suggesting that hysterical women can make this stuff up?

Then I read Maran’s book and realized, much to my chagrin, that the personal and political milieu that gave rise to her accusations was entirely familiar to me. While I never accused anyone of abuse, I was certainly influenced by the sex abuse hysteria that swept the country in the late 1980’s and early 1990’s. Not only did I feel honor-bound to believe any woman (or man, for that matter) who claimed to have been sexually abused, if anyone questioned these stories in my presence, I deemed them insensitive and sexist. I was, like Maran, a true believer.

Also, like Maran, I identified strongly as a feminist and, in my work as a journalist, wrote about women’s mental health issues from a feminist perspective. At one point, I considered writing a book about Multiple Personality Disorder (MPD), a controversial diagnosis that is most often associated with prolonged sexual abuse. And like Maran, I read The Courage to Heal: A Guide for Women Survivors of Child Sexual Abuse, which basically states that if you think you might have been abused, you were.

Reading Maran’s book, I was reminded of how childhood sexual abuse – including some truly bizarre stuff — was the hot news story of the day. I’ll never forget the descriptions of satanic rituals, underground tunnels, and dead animals that were reported on during the McMartin preschool trial in Los Angeles in 1988. And while I wondered if some of the details had been exaggerated, I never doubted that terrible things had happened there. And I never doubted that women like Holly Ramona, who claimed to have “recovered memories” of her father, a wealthy California wine executive, of raping her as a child, was telling the truth.

I had no direct involvement in cases like this, but Maran was actually in the courtroom, reporting on trials like Ramona’s. She was also given access to therapeutic sessions with perpetrators of incest. And, as if her professional life wasn’t already keeping her in the epicenter of “Planet Incest,” as she calls it, she was living with a woman whose existence revolved around her identity as an incest survivor. But even without “Jane” and her thrice-weekly therapy sessions and escalating stories of ritual abuse, as a feminist living in Berkeley, Maran was often in the company of women for whom incest was the embodiment of women’s political oppression. To question or deny an accusation of sexual abuse in this crowd meant you were siding with the oppressive – and silencing — patriarch.

Again, this perspective resonates with me. I remember being furious with my husband for questioning the concept of recovered memory, a phenomenon in which victims recall being abused years after it happened. I chalked it up to the fact that he had not had his feminist consciousness sufficently raised.

I also remember being asked by a therapist in my late twenties if I thought I’d been abused and immediately wondering if I had. My father was a complicated guy; he’d been unfaithful to my mother and was occasionally sexually inappropriate: Could something have happened and I just didn’t remember? The possibility tortured me for months before I finally let it go. Is it hard for me to imagine going further down this road and actually accusing my father of something? Well, yes it is, frankly, but not that hard.

Of course, just when it seemed like there was a child molester in every closet, the backlash began. After nine weeks of deliberation, a jury acquitted the owners of the McMartin preschool on all counts. In 1992, the False Memory Syndrome Foundation (FMSF) was formed to help the thousands of parents who’d been falsely accused by family members claiming to have “recovered” memories of childhood abuse.

Books and articles debunking the more extreme stories and statistics on child sexual abuse soon followed, including a 1993 article in The New York Times entitled “Beware the Incest-Survivor Machine.” In May of 1994, Holly Ramona’s father was awarded $500,000 in a suit against the psychotherapists who treated his daughter.

As the zeitgeist around incest began to shift to a less hysterical, more measured response, Maran too began to question her allegations. Or, rather, she began to listen to the doubts that had plagued her from the start — doubts she had pushed aside because to doubt herself meant to doubt all the victims around her. It might also mean the end of her relationship with Jane and ejection from “the Sisterhood.” In what is by far the most emotionally harrowing section of the book, she attempts to make amends, first and foremost to her father, who seems to accept it with enormous good grace, and then to the rest of her family.

While thankfully I do not have any retractions or amends to make, reading this book was a sobering exercise. It made me realize that Maran — like myself, and many women I know  — were wading in some pretty murky waters. I don’t fault myself for being sympathetic to the victims of incest or wanting to speak out on their behalf — I still believe that incest is an all too common and horrifying crime — but I regret being so willing to revile anyone who even raised the possibility than an accusation of incest, any accusation, might have been false. Call it group-think or mass hysteria or witch-hunting, we are all vulnerable to its reach.

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Nothing Left to Burn: A Wesleyan Student’s Final Message

September 22nd, 2010 — 11:55am

It’s a parent’s worst nightmare. Last week, Nora Miller, a junior at Wesleyan University in Connecticut, committed suicide by dousing herself with a flammable liquid and lighting herself on fire at the edge of one of the University’s playing fields. She was discovered early Monday morning with burns over 100 percent of her body and airlifted to Hartford Hospital. She died shortly after at a nearby burn unit.

According to various University blogs, the night before she died, Miller wrote the following entry on her Facebook page: “When there is nothing left to burn, you have to set yourself on fire.” The quote is from a song by a band called the Stars, from their album “Set Yourself on Fire.” Culling through various online comments by friends of Miller’s, there were numerous mentions of her sadness and depression. How could it be otherwise? A girl who feels she has “nothing left to burn” is in a dark place indeed.

A week later, the story continues to weigh on me. As a parent, I feel enormous sadness for Miller’s family. To lose a twenty-two-year-old daughter under any circumstances is unbearable. To lose a child to suicide, especially one as violent and painful as this one, can only mean a whole other level of hell. In fact, to even speculate about this family’s grief feels intrusive and part of me wonders if the only acceptable response to her death is to simply draw a curtain around it. Let those who knew Miller grieve in privacy.

And yet, I am haunted by the fate of this promising dark-haired girl, a film major and track star who reportedly liked Converse chucks and funky jewelry. A girl who shattered track records and was at the top of her class. Like so many smart and accomplished young people, she was – on paper anyway — someone who seemed to go from success to success, strength to strength.  Until, of course, she didn’t and despite her talent and drive was unable to see any way forward but her own violent end.

I am haunted by Nora Miller because I think as parents we sometimes fail to recognize how stressed-out and unhappy our children are, especially when they are successful. And that the pressure we put on them to excel – to have perfect grades, high test scores, artistic and athletic accomplishments – can be toxic, especially when mixed with underlying depression.

I am haunted by Nora Miller’s death because my daughter is one of those driven, hard-working young women. She also happens to be a freshman at Wesleyan. And while it feels wrong to dwell on my own state of mind in the face of this tragedy, I have to admit that having Miller’s suicide occur just two weeks after dropping my daughter off at her “Wes” dorm makes me feel her absence that much more acutely. Calls and texts have reassured me that my daughter is — for now anyway — happy and engaged. But Miller’s death has reminded me to never take such happiness for granted.

I do not presume to know why Nora Miller took her life, and I don’t want to imply that her parents were in any way at fault. But when a young woman ends her life in this kind of dramatic and public way, I do not think we can pull the curtain down and pretend it didn’t happen. We owe it to her to consider what her death might be telling us about how we are raising our children — and how we might do it better.

A version of this piece appeared in on September 22nd, 2010

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My Life, My Death, My Sense of Humor

July 2nd, 2010 — 10:27pm

Some people just can’t see the humor in death. Not so the Billboard Liberation Front (BLF).

A billboard created by the Final Exit Network (FEN), a controversial right to die organization, was on display for less than a month when it suffered a flash guerrilla attack from the BLF. The billboard, which stood at the corner of Howard and South Van Ness in San Francisco, originally read: “My Life My Death My Choice,” and was followed by the URL for the Final Exit Network’s website.

Once “liberated,” the billboard read: My Life My Death My Choice….

In a mocking press release, the BLF wrote that it was “honored to announce a new marketing partnership with Phillip Morris that finally brings together the rugged sense of American independence with your most important choice as a consumer: your death.”

“We’ve always said that the only two things in life that are unavoidable are death and taxes,” commented Michael E. Szymanczyk, Chairman and Chief Executive Officer, Philip Morris. “This campaign drives home that message where, if you are gonna die, might as well do it on your terms. Just like our Marlboro Men did.”

The press release went on to note that all former Marlboro Men “were unavailable for comment due to their rugged, manly choice of death by lung cancer.”

This is pretty funny, in a dark humor kind of way, and I’m all for getting rid of billboards. But unlike an earlier guerrilla action that took aim at the McDonald’s Corporation – doctoring a McD’s billboard to read: “You have about 10,000 tastebuds. Kill them all.” (instead of use them all) — the BLF used a small and controversial group who are already under legal pressure to make their point. (Four members of the Final Exit Network were arrested last year in Georgia after allegedly aiding a man with terminal suicide to die. The trial is set to begin next month. All four defendants are elderly and this has been an incredibly stressful time for them.)

But the BLF saw a golden opportunity to take a pot shot at Phillip Morris and they took it. And, frankly, who can blame them? FEN’s rather self-righteous slogan was just too good to pass up. But I am sorry FEN got caught in the crosshairs. Given our country’s enormous uneasiness about end-of-life issues (the Terri Schiavo case, talk of death panels, etc.) I think groups like FEN need to be able to get their message out.

But maybe not on billboards. After all, what makes the billboard liberationists so effective is that they use this in-your-face marketing technique against the marketers – and make the point that billboards are obnoxious. And whether you agree or disagree with what FEN is selling, it makes me feel a bit queasy that they are selling anything at all.

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Why People on Facebook Care that My Cat is Disgusting

June 8th, 2010 — 12:53pm

Since joining Facebook last year, I’ve come to realize that there are two basic types of FB users: those who post about politics, the birds in their backyard, the funny things their children say – and those who use FB to sell themselves. This second group, the self-promoters, invariably have a product to sell – a book, a show, a service, a business – and that’s why they are there.

I am, for the most part, a self-promoter.  But in my defense, promoting on FB was what everyone, including my publisher, said you had to do. It was the new reality, they said. Social Media is where it’s at in terms of selling books. Step One: amass friends, whether you know them or not. Step Two: bombard them with artfully worded references to your product. Step three: rinse and repeat.

But who are we kidding? Everyone knows exactly what you are up to. All those artfully worded posts “thanking” some person or another for their nice review of your book as if it was about them when of course it’s really about you.  That casually expressed “surprise” that the book would be published in Chinese? That’s right — all about you.

And for the first few months after the book came out, I was pretty thrilled to be getting all the attention – the reviews, the radio interviews — and for those friends who really are my friends, I like to think they were interested and happy for me.

But then over time, I noticed that there were an awful lot of obligatory sounding “great” and “congrats” getting tossed back in response to these self-serving status updates. And, as the weeks went by, sometimes… no comments at all. And I started feeling a little foolish as my “fabulous news” just hung there, utterly un-remarked upon. It was kind of like trying too hard at a party and having everyone turn away in embarrassment.

And then something very illuminating happened. I posted something about how disgusting my cat was (grooming on countertops, overeating, etc.)  and I was… ALIVE again. The comments came in fast and furious. Everyone wanted to weigh in on my kitty. There were expressions of concern, questions about age and diet (the cat’s not mine), humorous remarks, riffs off riffs, and on and on. And I realized that this light-hearted post about my cat’s revolting habits revealed the beating heart of our social nature — both in the real and the virtual world.

Yes, up to a point we want to hear about each other’s successes and know about each other’s big moments and events. We might even want to read each other’s books or blog posts. But Facebook is less of a market place than it is an old-fashioned town square. A place where we can stop and chat, maybe tell a funny story or share some outrage over the latest world disaster, not a place to hand out leaflets and make people sign petitions — and not a place to make people buy something from you.

In fact, the response to my cat post made me wonder if social media as a promotional tool hasn’t been somewhat overplayed. I’ve read a number of posts by bloggers bemoaning the fact that no one reads their blogs. I have, in fact, written some of those posts. And while posting on certain sites – Open Salon being one of them – does cause an up-tick of traffic to my book’s website, it’s pretty modest.

One problem may be that there are simply more writers than readers, more sellers than buyers — and more self-promoting status updates than we can deal with. Social media gives anyone who can make up a password and upload a photo, an instant platform from which to advertise themselves. The problem is that we are all competing for the same shrinking marketplace and we are all exhausted by the demand to read or applaud or buy each other’s work. I know, because I also suffer from promotion fatigue. I still bounce over and read the occasional blog or check out a book or some artwork, but I skim over much of it. If I didn’t, my writing life would be reduced to commenting on other people’s post and updates.

Which brings me back to my cat post. One reason it was so popular is because for once I wasn’t asking anyone to read or listen or do anything — I was simply inviting people to share in the common experience of dealing with a weird and irritating pet. And it is this universal aspect that is often at the root of the “hit” update on FB.

Let me give you another example. A friend of mine, a deft master of the pithy FB update, posted about trying to “make peace” with her gray hair. It caused a cyber riot. Post after post flew in. Heated debate ensued about the merits of going natural vs. continuing to dye. Dire warnings about similar experiments that ended badly. Impassioned pleas to keep the color going. Forget about politics, or someone’s boring book, show, painting or cause, here was an issue people could really sink their teeth into. More importantly, my friend wasn’t crafting an idealized, “marketable” image, she was revealing something real and imperfect about herself, owning up to aging and the fact that she dyes her hair.

While many things determine whether a post hits a nerve (including the relative celebrity of the poster) I think it is often the willingness to reveal, to be vulnerable and imperfect, that people respond to.  After all, we’re social animals at heart, programmed to interact, and while our socializing has taken on some pretty strange forms in recent times – 140 character tweets, status updates, and “liking” each other – keeping it real and showing the world our behind-the-scenes selves, is still what makes us feel most connected.

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Faking it: The Case for Pseudonyms

May 24th, 2010 — 2:11pm

I was recently called out on a blog entitled “Mothers of Brothers” for using pseudonyms in Imperfect Endings. A blogger named Jennifer (no last name) was bemoaning how all the mommy bloggers out there make up names for their children, post pictures of them with their faces obscured, and generally exhibit a high degree of paranoia about revealing personal data about their children.

She and fellow blogger, Emily, apparently do not bother with such unwieldy subterfuge. “First of all, we don’t think anyone would want to kidnap our children,” she writes. “And secondly, it’s too much trouble to have to remember what fake name we’re supposed to be calling our boys. Hard enough to come up with their real names.”

Seems like a reasonable approach to me and I liked her practical, no-nonsense tone. I too am annoyed by rampant parental anxiety. But then Jennifer turned her lens on me and my decision to use pseudonyms in my book. (I changed all names except my own and a handful of public figures, something I specify in a disclaimer at the front of the book.) To quote her:

“So her husband isn’t Jack, and her kids aren’t Clara and Lane, and her mother wasn’t Margaret? Who are they? And did any of this really happen? If you’re going to spill your guts about a real event, why sprinkle in fakery? There’s something terribly inconsistent, even cheapening, about the whole device…

“The business of the fake names seems coy at best – and a totally lame half-measure at worst. I was disappointed by this revelation. What was in many ways a beautiful, shiningly honest book began to take on the tarnish of untruth.”

The tarnish of untruth? Harsh words, but they made me wonder: Would the story I recounted be “more truthful” if I had used my family’s real name? It certainly would for those who knew my family, but for the average reader who picks up my book, why should they care? And what Jennifer may not have considered is that authors don’t arbitrarily make the decision to change people’s names; we have real reason to do so.

Primary among them is the desire to protect the people we love. In my case, I worried about my two older sisters, both of whom are major figures in the book. No one grows up thinking that their sibling is going to write about them someday and the news is not always greeted with unalloyed joy. Even if it is a flattering portrayal, the subject has to put up with the writer revealing intimate details of their lives from their perspective. It’s bad enough that your private experiences are being made public: it’s also somebody else’s version of events.

By not using their real names, I offered them some protection, limited as it was. While my sisters will still be easy to identify by friends of the family, they can at least choose to keep their appearance in my book unknown to more casual acquaintances. (All three of us live in different parts of the country and have many friends who have never met the rest of us.)

And there are often legal reasons to obscure people’s identities, something authors have to take seriously in these litigious times. (I know of one memoirist whose extremely successful book was torpedoed by an equally successful lawsuit from her ex-husband.) While I don’t think my portrayal of anyone would have risen to the level of libel, the lawyer who vetted the book at Simon & Schuster did carefully consider the possibility of an “invasion of privacy” charge. As I recall, when Augusten Burroughs was sued by several of the family members he wrote about in Running With Scissors, it wasn’t because he’d accused them of heinous crimes, it was because of the public embarrassment they’d suffered as private citizens — and he changed their names.

But authors aren’t just worrying about protecting themselves. I had a responsibility to protect the people I wrote about who might have faced legal consequences if I had revealed their identities. I wrote about a psychiatrist who gave my mother a prescription for a lethal dose of Seconal, and a volunteer from the Hemlock Society’s “Caring Friends” who offered to help my mother end her life. I did not want to “out” either of these people.

Deliberately obscuring people’s identities in order to avoid outing sources is a common journalistic device. Think how many articles in The New York Times quote “unnamed officials.” I would argue that this actually allows us to get to “the truth” of events in a way that a more rigid set of reporting guidelines might not. Yes there are those who take this fudging of names to extremes – Washington Post reporter Stephen Glass made up people as well as names, and let’s not even touch the sorry case of Stephen Frey– but I tend to think the risk of abuse is worth it. How many people would simply refuse to be quoted if they had to identify themselves? And think of how many books and articles would never get written if all names had to be revealed.

I may be flattering myself, but writing about my mother’s decision to end her life and the emotional fallout for my family felt like a story that needed to be told. There are seventy-eight million baby boomers out there dealing with their parents aging, getting sick and dying – and facing their own “endings” as well. While relatively few will deal with a parent who chooses death rather than dying naturally, many will face the questions my sisters and I faced. Who in the family is willing or able to step up when a parent needs more care? How do we talk about “the end” ahead of time so we are not blindsided by it? And how do we make the transition from being an “adult child” to parenting our parents?

I could have written Imperfect Endings as a novel and yet there is an undeniable weight in telling “true” stories and, in the end, the names you use don’t seem that important.

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Homage to An Unsentimental Mother

May 9th, 2010 — 5:53pm

Mother’s Day was more of a rumor than a reality when I was growing up. I heard friends talk about cards and flowers and going out to brunch but it wasn’t something we did at my house. It’s not that I didn’t have a mother at home — I did. But she and my father did not believe in Hallmark card expressions of filial devotion — Father’s Day was also a nonstarter — and they scoffed at anything that smacked of sentimentality.

Part of a group of forward-thinking young liberals in Washington D.C. in the 1960’s and ‘70’s, my mother prided herself on having left the tenets and traditions of her past behind. Although she’d grown up in a politically conservative, Catholic family who prided themselves on their family connections (Daughters of the American Revolution, various illustrious ancestors), my mother had gone off to Sarah Lawrence and recreated herself as a modern, secular woman devoted to a “life of the mind.” Mother’s Day was just a manufactured tradition, she scoffed, a product of our consumerist culture.

For years, I accepted this interpretation. Until I married a man whose mother was the opposite of mine; every occasion, big or small, was an excuse for a present or a card, filled with flowery sentiments. Raised in that tradition, my husband naturally taught our two daughters to make a big deal out of Mother’s Day. And so, in my thirties, I found myself part of the Mother’s Day brunch brigade, clutching my flowers and homemade cards at some fancy restaurant table, dressed in my springtime best.

I loved every minute of it. I never found these rituals trite or clichéd; I found them touching and exotic. Like Thanksgiving or the Fourth of July must feel to foreigners celebrating these occasions for the first time.

It was during these early years of motherhood, that my mother’s Parkinson’s disease grew markedly worse and she began to talk about wanting to end her life on her “own terms.” She’d been in a Parkinson’s support group and had seen first hand how bad things could get for some people, and she was determined not to end up “incapacitated and incontinent.” At first my two sisters and I did not take her seriously, but after she joined the Hemlock Society and asked me for help in procuring a lethal dose of Seconal, we began to suspect that she might indeed go through with it.

For over a year, my mother talked of little else. True to form, she spent little energy inquiring how my sisters and I felt about her committing suicide but would call up and matter of factly ask –“I was thinking about ending things on April first. Would that work for you?” – and insist I check my calendar. These conversations, which invariably happened just as I was cooking dinner or getting my daughters ready for school, were both maddening and distressing.

By the spring of 2001, I was flying to Washington D.C. from my home on the West Coast every three or four weeks and worrying nonstop about my mother’s increasingly serious suicide plans. Finding myself at home a few days before Mother’s Day, I did something I had never done: I sent my mother a bouquet of flowers — with a card. On it, I told her that I loved her and wished her a happy Mother’s Day. It felt both right and vaguely transgressive and I had no idea what she would make of it,

“You know, I never thought I cared about things like this,” she said, sounding a bit amazed when she called to thank me. “But I realize that I do!”

“And to think, you could have been getting flowers all these years,” I said, teasingly.

“Yes, I suppose you’re right,” she laughed. “I guess you’re never too old to learn something about yourself.”

Two months later, my mother stopped eating and drinking. Eleven days later, she died. She chose fasting, in part, so that my sisters and I could be there with her at the end without having to worry about the legal consequences.

My mother remained remarkably cheerful throughout this time. I think she was relieved to have the dying process finally underway. “I’ve had a good life,” she told me, sternly. “And I’m not sorry to go.”

Our conversations while she was fasting were the usual — blunt, funny and argumentative. Later, my older sister and I would joke about how it took having my mother in a coma to be able to hold her hand and unabashedly tell her how much we loved her. But long before the morphine and the lack of food caught up with her, I was also able to say a number of loving, sentimental things to her, like what a great mother she’d been, and how much I would miss her. Things I had never said before.

I guess you’re never too old to learn something about yourself.

(This piece appeared in The San Francisco Chronicle on May 9, 2010)

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The Wanderers:Free Will, Dementia and Death

May 6th, 2010 — 10:02am

Back in the early 1990’s, Sam, a family friend with Alzheimer’s slipped undetected out the door of his nursing home and wandered into a freezing winter night. He was found the next day, dead from hypothermia, at the edge of a stream. A charming, bright-eyed man who’d never lost his deep southern drawl, Sam’s death was a cause for great sadness, although we all felt the real loss had happened many years before.

According to The New York Times, “wanderings” by people like Sam are reaching new levels of frequency as the nation ages. In Virginia, searching for lost and confused dementia patients has become the most common search scenario, outstripping the hunt for lost children and adolescents. And in Oregon, the number of searches for lost male Alzheimer’s patients nearly doubled last year to 26 from 14 in 2008 – a number that had tripled since 2006.

About 6 in 10 dementia victims will wander at least once, according to health care statistics, and these numbers are going to keep rising as the devastating effects of Alzheimer’s cuts a swath across the nation’s elderly. At this point, the mind-robbing disease affects half of the people over 85 in this country, and like other degenerative diseases, such as Parkinson’s and multiple sclerosis, Alzheimer’s has no cure.

As anyone who has dealt with a partner, parent or grandparent with Alzheimer’s knows, the dissolution of self – often beginning with the loss of words and short-term memory – is a long, slow train wreck. In the latter stages of the disease, sufferers no longer recognize or respond to their spouses or children and often can’t remember their own names. At this point, caring for an Alzheimer’s patient at home is often impossible and many sufferers are put into nursing homes or Alzheimer’s facilities.

Reading the Times story made me think of Sam and a theory I have long held about people like him. I have always suspected that these “lost” wanderers are motivated by something entirely sane and intentional. Even as their brains have atrophied, their ability to think and reason gone, some instinctive desire to extricate themselves from their circumstances remains. And in a momentary flash of clarity – an open door, an unguarded path — it takes charge and they are gone, perhaps on their last great trek, their final Walkabout. A testament to their still-cogent, if entirely instinctive, desire for freedom.

Of course, freedom for these escapees will often mean “freedom” from life. But can we blame someone for wanting to escape life when that has come to mean living in restraints in a nursing home surrounded by strangers, confused and alone? Is it any wonder that wanderers like Sam frequently talk about their desire to “go home?”

Perhaps the notion that these wandering souls who light out for the hills are “choosing” to die is romantic — or even macabre. And certainly one feels sorry for their frantic caregivers, left to imagine their husband or mother out there alone and in danger. But as I read about this epidemic of wanderers, I wonder if they are, in fact, driven by some remaining shred of logic or desire, rather than simply confusion or fear.

According to the Times, wanderers often follow fence lines and tend to be drawn towards water. They also hide in attics and locked closets. What is consistent is that these patients don’t want to be caught. According to Robert B. Schaefer, a retired F.B.I. agent, a “dementia wanderer” will sometimes take evasive action to avoid detection. So while they may not know their name anymore – or your name – they have the wherewithal to hide, or run away, following natural landmarks to avoid going in a circle and ending up back where they started.

Do we really have to think very long or hard to understand why these patients might want to get the hell out of there? Rather than see this rash of escapees as one more manifestation of their disease, maybe we should see it is a reflection of what is still healthy in them: their capacity for action and thought.

All but the most radical fringe of the right-to-die movement will balk at the idea of helping people with dementia to die, and this is as it should be. People need to be in their “right minds” to make such a choice and free will exists only if there is a clear, conscious ability to make a decision and act on it. But these wanderers aren’t playing by our rules any longer. They have their own agenda. And maybe we should listen to what they are saying about what they want.

I contacted Sam’s daughter today and this is what she had to say about her father:

“I was upset, of course, angry and stunned when he escaped from the nursing home, but by the time of his memorial service, I was cheering him on. He was not the kind of person who could tolerate such a place, which was a decent one at the time but still put him in physical and probably chemical restraints a lot due to his wandering into other peoples’ rooms. I am very, very glad he got out of there, got out of his diseased body. And having made my peace with losing my father long before, it was in a way, a relief. It is what he experienced on the way that I don’t like to think about. But very few people have an easy exit from this life.”

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