therestlessnest

where life's not empty, it's restless.

Archive for the month “March, 2015”

Diagnosis

IMG_1669 Imagine: your doctor knows you have cancer, but chooses not to tell you or your family. Unthinkable, isn’t it? And yet consider this: fewer than half of all seniors diagnosed with Alzheimer’s disease or their caregivers are actually told of the diagnosis.

I just spent three days in the other Washington at the national Alzheimer’s Association’s Advocacy Forum. IMG_1661I was one of a thousand volunteers. We were loaded up with all kinds of facts and figures to use in conversations with all 12 of our Washington state senators and representatives and their super-smart aides. But that factoid about diagnosis is the one that stuck with me. Really? Really: 55 percent of seniors diagnosed with Alzheimer’s and their caregivers are not told.

If the issue was that 55 percent of doctors assume someone with dementia would not remember their diagnosis, so why bother, then surely they would at least tell that person’s family caregiver. But no, in 55 percent of cases, they don’t even do that.

I can tell you many dire and alarming facts about Alzheimer’s disease. For example, it is now the most expensive disease in America. This year, we will spend 226 billion dollars on caring for people with Alzheimer’s. That number is expected to soar to 1.1 trillion in 2050.

Two thirds of those dollars come from Medicare and Medicaid. EndAlzThe other third comes out of the pockets of overwhelmed families. None of this is sustainable, which is why one thousand of us were on Capitol Hill trying to make the case for funding research now—the goal is effective treatment, prevention or even a cure by 2025—so that we won’t be facing demographic and economic disaster later.

But that business about diagnosis not only got my attention, it got the attention of just about everyone we talked to. Why? Because it screams, louder than dollars, everything that is wrong with the way we view Alzheimer’s disease. It says: we have no reason to hope. There’s nothing to offer people who are diagnosed. Better they continue to muddle along, not knowing. None of which is true. There is hope, aka progress on the research front, and there will be more, especially if we start adequately funding the scientists who are working as hard as they can on everything from genetic decoding of the disease, an area where huge progress has been made in recent years, to finding ways to reduce or even dissolve plaques or otherwise alter brain chemistry. And it is not better for families to muddle along, not by a long shot. A diagnosis of dementia calls for both long-term planning and short-term safety and lifestyle changes, including emotional support for both the person with Alzheimer’s and their family members.

A doctor’s decision not to share a diagnosis is so redolent of the bad old days, when they could get away with being that patronizing. When patients were not perceived as having rights, or even dignity. And it evokes shame and stigma: surely you wouldn’t want to speak out loud about an illness like Alzheimer’s, now would you?

One of our goals on Capitol Hill was to persuade lawmakers to support the HOPE for Alzheimer’s Act, which was introduced for the fourth time this year. The HOPE Act ensures that Medicare patients who are newly diagnosed with Alzheimer’s disease are not only told of their diagnosis, they will have a detailed discussion with a health care professional about treatment and support options. Pretty simple. Pretty important.

When my mom was finally diagnosed after nearly a decade of wondering what was wrong with her brain, of feeling that shame and stigma that it might somehow be “her fault,” such a conversation would have been a miracle. We had no idea what to expect or what we should do. It’s long past time to make sure that doesn’t happen again.

And thankfully for us, my sister had the good sense to call the Alzheimer’s Association.

For more Alzheimer’s stories, news and resources, check out the AlzWA Blog, where this piece is also posted. 

HBBfinalcoverUpcoming readings: April 1, 7pm, St. James Cathedral Pastoral Outreach Center, 907 Columbia Street, Seattle. 

April 30, 7pm: The Regulator Bookshop, Durham, NC

May 26, 7pm: Book Culture, 450 Columbus Ave, New York

 Buy Her Beautiful Brain from the small or large bookstore of your choice. Find a bookstore here. Order the Kindle version here.

 

 

 

Dignity is powerful

rebuilding-home Resistance is “people insisting on their dignity and humanity in the face of those who would strip them of it,” said author and documentary filmmaker Jen Marlowe. She was speaking from the base of a tiered classroom in Seattle University’s Sullivan Hall, which made her appear even shorter than her five feet and one quarter inch. It was 9 am on a Saturday. Her talk was titled “Reflections on Resistance: Palestine, Darfur and the Death Penalty.”

I had arrived a few minutes late, not anticipating the crush of humanity at the check-in table for the Search for Meaning Book Festival, which packs the Seattle University campus with searchmore people than it holds on any other day in the year. Apparently there are many of us in this bookish, broody city who are searching for meaning. SU has responded by bringing to one campus, for one day, a dizzying variety of authors who have found meaning in faiths and places and chapters of history I never knew existed. Hild of Whitby, for example—the subject of Nicola Griffith’s book, Hild: The Woman Who Changed the World 1400 Years Ago.
Apparently Hild persuaded the Celtic and Roman bishops of the Dark Ages to sit down together, work out their differences, and unite the unruly believers of ancient Britain: quite an achievement for a single woman in the wilds of Northumbria.

Back to Jen Marlowe, who is a bit of a present-day Hild. Marlowe’s search for meaning takes her to epicenters of resistance: to places like Palestine, Darfur in Western Sudan and the state of Georgia’s death row. She is compelled to report, record and write stories of people asserting their dignity in the face of terror and destruction. jen_filming
In her talk, she wove stories from her three books, four documentary films and many shorter works. She told us of a wedding she witnessed in Darfur, a scene of dignity springing from defiant joy. She told us of a Palestinian man’s vow to replant his family’s ancient olive grove after it was deliberately uprooted by Israeli settlers. She described her long, sorrowful witness to the dignity of the family of Troy Davis, who was wrongly convicted and executed by the state of George in 2011.IATD-cover

“Easy for me to go around saying ‘Dignity is an illusion,’” I scribbled in the margin of my notes. I was remembering a Restless Nest essay I wrote last fall, about how that phrase—“Dignity is an illusion”—had become a gallows-humor punchline for me during a bad year. Sure, it was a rough time: my marriage was on life support, my mother was diagnosed with Alzheimer’s disease and I was having trouble landing a job. But, as I listened to Jen Marlowe, I began to understand something: to dismiss dignity as a mere illusion was a privilege. I could toy with dignity, I could make light of it, because neither my core worth as a human being nor my very life were in danger of being ripped from me. My extended family could gather without fear of imminent slaughter. My house and garden were not in danger of being arbitrarily bulldozed. I was not about to be legally murdered by my own state for a crime I did not commit. The kind of dignity I was calling an illusion was small-d dignity, as exemplified by dreams of turning up for a job interview in furry slippers. The kind Marlowe was talking about at the Search for Meaning Festival was capital-D dignity: which has everything to do with meaning. If we disregard the dignity of the people of Darfur, Palestine and Death Row, we disregard the meaning of their lives. Of all human lives.

And to stand up for the dignity and worth of human life in the face of those who would dismiss it is to claim meaning. No search required: here it is.

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Upcoming Her Beautiful Brain readings: April 1, 7pm, St. James Cathedral Parish Hall, Seattle; April 30, 7pm: The Regulator Bookshop, Durham, North Carolina; May 26, 7pm: Book Culture, 450 Columbus Ave, New York. 

Buy Her Beautiful Brain from the small or large bookstore of your choice. Find a bookstore here. Order the Kindle version here.

 

 

 

The Un-cool Writers’ Club

1003375_10204029713357348_4120200472773550975_n-1 If you aspire to be a cool writer, then whatever you do, don’t hang out with me. I am your worst nightmare. Here’s why: for starters, I am old, so old I may as well tell you how old. 58. Fifty-eight! This would be acceptable if I had published many volumes by now. But no: I just published my very first book. And my book is a memoir. This might be acceptable if I was a recovering addict or had escaped the Taliban. But no: I am the daughter of a beautiful, smart woman who drew an unlucky card called younger-onset Alzheimer’s disease, and that is what I wrote about. Worse, my current work-in-progress is also a memoir, on an equally unhip topic: faith and doubt.

There’s more. I did not get my Master of Fine Arts degree until I was 53: enough said. And I have another career, which confuses people. IMG_0871It’s a reasonably cool career—documentary filmmaking—but alas, I’ve never had a film at Sundance (which would vault me right into the category of Permanently Cool). And I make films with my husband, which is way less cool than if I were doing it solo. Speaking of my husband: we’ve been married 27 years. Yikes! Just call us Ward and June!

And then there’s my lifetime issue of not wanting to be mean. In fact, right now, writing this, I’m uncomfortable with the whiff of snarkiness I detect; the implication that I don’t like cool writers, because I do. I like many cool writers. But that is not my point. My point is this: over my 58 years, I have learned, sometimes reluctantly but ultimately with relief, how wonderful, how freeing, it is to live life as not only an un-cool writer, but an un-cool person.

My education in un-coolness started early. There were painful drills, there were pop quizzes. But I faced my first big exam at the beginning of 9th grade at Seattle’s Eckstein Junior High School. All the aspiring cool girls, my sad self among them, hoped to be selected for something called “Girls Club,” which involved wearing special scarves and blouses once a week and engaging in lightweight service projects. Really, “Girls Club” was a sanctioned clique. My best friend—the one with whom I’d bought journals and real fountain pens and candles and browsed for old-fashioned children’s books at David Ishii’s bookstore in Pioneer Square—made the Girls Club cut. I did not. She dropped me with stunning speed.

When I came up for air after a good long cry, I realized what a great gift this was. I had been spared all the stress and effort it would have taken to retain my status as a Girls Club girl. I was free! Free to be my un-cool self. To keep on writing in my ink-stained journals; to keep on riding my bike to David Ishii’s or the Arboretum or anywhere else I could curl up with a book, undisturbed by cool people.

My junior high years coincided with my parents’ divorce, which, in that long-ago era, was definitely not a cool thing. But it was my Goddard College MFA advisor, Victoria Nelson, who helped me understand, decades later, how the divorce contributed to my liberation. Arlene and 6 kidsAll those hours I spent babysitting my younger brother and sisters while my mother went back to college gave me freedom to continue on my un-cool, future-writer path: unsupervised by adults, unseen by cool peers, I could write my fervent, un-cool poems and journal entries and read, read, read while my siblings watched cartoons or played. Sometimes we played school, with me as teacher. Or pioneers, or explorers. So not cool. I loved it.

And now that I’m a late-blooming, un-cool author, I’m more grateful than ever for the un-cool path that got me here. Not much I can do about my age. Nor my attraction to the wrong subjects. Nor my love of memoir writing, the actual hours spent writing, for which I credit my first Goddard advisor, Michael Klein, who taught me that memoir writing could be part poetry, part journalism, part essay: a hybrid, a blend, not unlike documentary filmmaking. Not unlike the way my restless brain has always worked.

The path of the un-cool writer is unpredictable. It’s more likely to result in rewards that can be measured in moments—conversations I’ve had after readings, emails from long-lost friends—than in big royalty checks or New York Times reviews. But it is the path I’m on, and I am grateful every day.

Upcoming readings: April 1, 7pm: St. James Cathedral Parish Hall, Seattle.  April 30, 7pm: The Regulator Bookshop, Durham, North Carolina.

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Buy Her Beautiful Brain from the small or large bookstore of your choice. Find a bookstore here. Order the Kindle version here.

 

 

                       

The Accidental Lobbyist

EndAlzWe were five for five. The first five legislative aides we visited all had personal connections to Alzheimer’s disease: three grandmothers, one aunt and one best friend’s grandmother. This could work, I thought. We could build support, one aide’s grandma at a time!

“Building support,” also known as “lobbying,” is a word that has acquired a lot of baggage in the last five or fifty or 250 years, depending on how you’re counting.

“Did you lay some sports tickets on the desk when you walked in?” my son asked.

“Yeah, right,” I said. “Doesn’t quite work like that on the nonprofit side of the fence.” But the question did make me wince. Because in truth? The day I spent walking around Olympia with a purple sash tied, beauty-pageant style, from shoulder to waist made me proud to be a volunteer lobbyist. I was one of 105 humble foot soldiers who showed up to help the Alzheimer’s Association make the rounds. Most of us were rookies. Fortunately, we were matched up with experienced staffers who’ve done this before. My team leader was Janet Ceballos, social services manager for the Western and Central Washington chapter. Seven times, I watched her approach a state lawmaker’s reception desk, her face friendly but determined, her palm-sized note card handy in case she needed it.

We weren’t on a hard-sell mission. In 2014, state lawmakers passed a bill establishing an Alzheimer’s Disease Working Group, whose job it is to come up with ways our state can cope with the predicted dramatic increases in the need for dementia care over the next few decades. We may not be Florida, but we have a sizable Baby Boomer cohort that is likely to stay right here in Washington as they age. This will be a nightmare if we don’t plan ahead. So our goal, as we walked from one office to another, was to remind lawmakers of how important it is to continue to support this work.

What you never know, when you bring up Alzheimer’s, is whether the person you’re talking to has any personal connection to the disease. What is increasingly clear is that just about everybody does.

“This feels good,” said one member of my team. “It’s democracy in action.”

Yes it is, and yes it did feel good: to be making personal connections instead of sending emails or “liking” Facebook posts. (Check out these happy pictures on the Chapter blog site: good feelings all around!)

And about those purple sashes: at first, I was hesitant. Weren’t they just a bit too Miss America-esque? But then I noticed how my fellow volunteers stood up a little straighter and walked a little taller once they got their sash on. And there was no mistaking what the sash meant: “Alzheimer’s Association” was written loud and proud across that purple. And as we walked, I thought of my mom, who lived with Alzheimer’s disease for a long time, and the looks people would sometimes give her, if she said something odd or repeated herself or couldn’t add up her change. I thought of how I would feel: first embarrassed, then angry that I was allowing myself to feel embarrassed. So it felt good to wear the sash: for Mom. For all those times when I allowed the stigma of Alzheimer’s to sting.

Momandme1998     Just wearing that sash might have been the best message we volunteers could deliver to Olympia. Because what we were saying, to the aides whose grandmothers have the disease and to everybody else, is: we are done with shame. We’re done with stigma. We’re ready to roll up our sleeves and get to work on that state plan, and we hope you are too.

HBBfinalcoverBuy Her Beautiful Brain (4th on the Ravenna Third Place Books’ current bestseller list!) from the bookstore of your choice. Find a bookstore here. Order the Kindle version here

Upcoming reading: Friday, March 6, 7pm, Mt. Baker Park Presbyterian Church, Seattle. It’s a group reading–poetry, fiction, memoir–and I’ll be sharing new work from my next book (working title: The Observant Doubter.)  

Radio lovers: you can hear the Restless Nest commentaries every Tuesday at 7:45 a.m. on KBCS, streaming online at kbcs.fm and on the air at 91.3 in the Seattle area. Podcasts available too.

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