therestlessnest

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

Spring Fever

IMG_1707What a great day it was to have five working senses. My nose might’ve had it the best: from coffee to strawberries, lavender, mint and, topping the list, dirt. I wallowed in it like a three-year-old in a sandbox: scooping wet compost into my garden bed, raking it, poking holes, patting seedlings into place. Rainbow chard, Merlot lettuce, Dinosaur kale: day one for this year’s 2 feet by 4 feet vegetable kingdom. Reach high, seedlings! Shake off that greenhouse gloom: you are outside now, kids, and every day, we’re all going to get a few more minutes of this golden light.

My husband and I started our Spring Fever Saturday with a long tromp through the Washington Park Arboretum. For two hours, we were the greenhouse transplants, stretching into warmth and light. IMG_1694Spring in Seattle is like that: everyone turns into happy seedlings, faces pointed skyward, toes in the mud. Or maybe we’re more like a tribe of Munchkins, blinking and wide-eyed as we obey the urging of the sun to come out, come out, wherever we are. The Arboretum trails were thronged with strolling birders and blossom-lovers, painters with easels all along Azalea Way, runners and rubber-booted families in the marshes of Foster Island. What an old friend of a landscape this is for me, I thought as we sat and put our boots back on after wading across a submerged bit of the Foster Island trail. On suddenly warm spring days just like this one, I used to come down here on my bike when I was 12 years old and find a sun patch where I could stretch out in the grass and read, looking up now and then to watch the parade of boats through the Montlake Cut.

IMG_1701 (1) The surprise of spring is this: every single year, it feels brand new. Every year, we get to do it all over again, right along with the azaleas and the marsh lilies and the painters with their easels. Their fresh newness is ours. Our fresh joy is theirs. I didn’t understand that when I was a dreamy preteen, spooling around northeast Seattle on my bike. I never dreamed that grownups in their fifties—such an utterly unimaginable age!—could feel as baptized by Spring as I did.

After our walk in the Arboretum, it was only natural to buy seedlings and go home and put them in the ground. Planting things is not something I did much of as a child. My mom grew up in Butte, Montana, a mining town where gardening was nearly impossible. Her agenda was to keep the rhododendron and lobelia bushes around our house alive and the lawn mowed. And I’ve never been very systematic about learning on my own. I pick up tips here and there from friends, neighbors, magazines and my more green-thumbed sisters, but when I’m in the garden, I always feel a bit like a clueless kid, especially when I’m planting. Did I put this one in the right place? Will it get the right mix of sun and shade? Should I water like crazy or not?

And the number of seedlings that come in one tiny plastic cup always, always catches me by surprise. I felt like the Sorcerer’s Apprentice, adding more and more rows as what I thought were four plants turns into eight, 12, 16: a potentially ridiculous amount of lettuce, kale and chard for our household, which currently numbers three.IMG_1698

But on Day One in the garden, that’s not the point. Today, the point is that we’re shaking off winter, those seedlings and I. And the fact that we get to do this every year is astonishing.

Proud to be featured this week on Norelle Done’s SeattleWrote blog.

Upcoming readings:

April 30, 7pm: Her Beautiful Brain reading, The Regulator Bookshop, Durham, North Carolina

May 26, 7pm: Her Beautiful Brain reading, 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.

 

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.

Watching Still Alice

images“I wish I had cancer,” 50-year-old Alice Howland says to her husband, not long after learning she has younger-onset Alzheimer’s disease. With cancer, she explains, come pink ribbons and talk of empowerment and courage. With Alzheimer’s, she sees only shame and isolation ahead. The end of her career. The distaste and inevitable distancing from friends and family. And she is right. Though the Alzheimer’s Association and many other advocates are doing everything possible to change our perceptions about the disease, we still have a long way to go towards the compassion and empathy with which we now view nearly all other illnesses.

images-1          Alice Howland is a fictional character, but in the movie Still Alice, Julianne Moore brings her to life with shattering clarity. A professor of linguistics at the top of her game, Alice is an almost unbelievable paragon of ordered, focused achievement. When she and her on-screen family are introduced, it’s hard to like them, they’re all so successful and so—chilly. It’s as if they live in a walk-in fridge, where everything is in its place and nothing is warm or sensual. But like a power outage in mid-summer, Alzheimer’s quickly breaks that down. We watch Moore melt in the middle of a presentation. We watch her forget that she just met her son’s new girlfriend. We see her panic because she can’t find the bathroom in her own home. Meanwhile, her husband and three grown children respond as they are able, or not. Turns out it’s the youngest daughter Lydia, played by Kristen Stewart, who has the love and depth to handle the horror of caring for Alice as she crumbles. julianne-moore-kristen-stewart-watch-julianne-moore-and-kristen-stewart-shine-in-new-still-alice-trailer

Still Alice had me from the first minute. Alice’s story is not my mother’s, but it was close enough to make me squirm. My mom was in her late 50s when she began to worry about her brain. Though she was not a Columbia professor, Mom was brainy and proud of it. And like Alice’s children, we were proud of our mother; proud of the fact she’d gone back to college after our parents divorced and earned a bachelor’s and a master’s degree. This made it even more surreal to have to accept Alzheimer’s as her fate. Still Alice brilliantly captures that surreal air that seeps into a family along with a diagnosis of early dementia, without the use of special effects or camera tricks but instead by staying very close to Alice and her ever more claustrophobic and confused point of view. Moore’s eyes say everything: not in a silent movie way but subtly, alternating between distilled effort and brackish flatness.

As I watched, I shifted from identifying with Alice and imagining the terror I know I will feel if Alzheimer’s turns out to be my fate to remembering how I was with my mother, identifying first with Anna, the severe oldest child who can barely stand to be in the same room as Alice and then with Lydia, whose heart is breaking but who is able to still treat her mom with humanity and grace. I wish I’d been Lydia more of the time. But this also is something the film captures so well: we don’t know until we get there how we’ll do. What will make us recoil and what will inspire us to rally.

10439509_10152589930319379_3980131392185575086_n         The most brutal scene for me was when Alice tries, and fails, to follow the suicide instructions she had left herself earlier in her illness. I remember reacting this way to the same scene in Lisa Genova’s best-selling book by the same name. It is perhaps the cruelest aspect of Alzheimer’s: death with dignity, as we call it in the state of Washington, is impossible. And yet: in the final scene of the movie, we see that Alice, now beyond words, is still capable, somehow, of love, thanks to the daughter who is still there to give it. I didn’t have Lydia’s strength and devotion. But lucky for me, I had brothers and sisters, children, nieces and nephews. Together, we did the best we could.

Still Alice is a small, slice-of-life film. It is only one Alzheimer’s story. But thanks to Julianne Moore, who has been nominated for an Oscar for her performance, and Kristen Stewart, who should have been, the movie treats this horrifying illness with exactly the compassion and courage that Alice moans is missing from the way we view Alzheimer’s: never guessing that by the end of her story, she herself will be raising the bar.

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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.

 

 

Dateline Máncora

IMG_1585There are only so many ways to describe a beautiful beach. The true beauty of it, for writers and readers, is the way it allows your mind to travel lightly, far and wide, or to venture deeply and with great absorption, as you wish or as you dare, always returning to the anchor of the beauty before you. The surprise of it, on this trip, is that our beach is in Peru.

Peru is the Inca Trail, the glorious Andes, sprawling, sleepless Lima. It is also one of the most ecologically diverse countries in the world. From where I’m sitting now in Máncora, on the north coast, the Amazon basin is not far away. Nor are the snowy high sierras. But this coastal landscape is a rugged desert edged by a strip of long, curving bays and beaches.

We came to Máncora because it is a town my great-uncle and his family lived in for a year in the 1950s. It was a dramatic change from their elegant Lima home. My cousin Andy remembers Máncora as an 11-year-old’s backwater paradise, where he played in the dusty hills and on the sublime beach. We are in Peru to wrap up filming on our documentary, Zona Intangible, which was inspired by my great-uncle, who lived here for two decades and was a pioneer of Peru’s fishmeal industry. The film won’t be all about fishmeal or all about my uncle; it will, mostly, tell the story of a handmade city outside Lima where a clinic on a dusty back street bears his name and where the notion of what home is has taken on a new meaning. Is home a one-room shack on a hill of sand? A house in a fishing village where your father has decided you’ll live for this one year? Is it where your family lives, or is it where they came from?

Máncora is an easy-going town; a surfer’s paradise; the kind of place people roll into and stay longer than they thought they would. Our hotel—EcoLodge Máncora—is owned and run by French ex-pats. Much tinier than its name implies, it feels more like an old-fashioned guesthouse, the kind of place Graham Greene might have stayed, cross-bred with a tree-house that just kept getting bigger. The rambling “hostel” where we watched the Superbowl (Seattle friends: I will say nothing more on that front, I promise) featured a swimming pool, a ping-pong table, a cavernous bar with a big screen and many guests who appeared barely old enough to travel on their own. Maybe some of them will stay and make this their home for a while.

Rustin and I started our marriage living out of backpacks and traveling around the world for ten months. So sometimes, traveling feels a bit like an emotional home for us. A place where we’re comfortable together. Trips like this one—where we’re working for ourselves (Zona Intangible) and for others (the University of Washington’s Dept. of Global Health, which is doing amazing work in Peru) and also vacationing (the beach) feel natural to us. But, unlike during that first year of our marriage, we now do have a home, and it’s in Seattle. And as we near the end of this trip, we’re looking forward to getting back to it. Cold weather and all.

My Introduction to Memoir Writing class at Seattle Central College is now full! Next session will be in Fall 2015.

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

I had a great conversation with Women in Film Seattle President Virginia Bogert that she turned into a member profile of yours truly. Thanks, Virginia!

 

 

 

 

Why I Volunteer for Research, Part Two

QUIBRO_hires2Although being a control subject in Alzheimer’s research studies involves plenty of memory tests, there are neurological tests too. I was tickled with feathers, tapped on the elbows and knees, peered at with a penlight in my eyes. And there were psychological questions: On a scale of one to ten, do you usually feel life is worth living?

I was weighed and measured. I gave blood. I peed in a cup. My family tree was drawn, with special attention to anything that might be relevant: Grandma Cere’s Parkinson’s disease; Great Aunt Eine’s Alzheimer’s disease, which started in her seventies. I was approved for a lumbar puncture, more commonly known as a spinal tap, and a week later, I came back and curled up in a ball while two tablespoons of fluid were extracted from my spine with a long quivery needle: two tablespoons that would be turned into 50 droplet-sized samples for research. My husband filmed nearly all of it, from What day is it? right through the spinal tap. Later, we filmed interviews with four different doctors.

But for me, those first filmmaking visits to the University of Washington’s Alzheimer’s Disease Research Center (ADRC) turned into more than just clips for our documentary, Quick Brown Fox: an Alzheimer’s Story. It was the beginning of what has become a meaningful part of my life. I am a regular research participant. Every fall, the ADRC calls me in. Depending on what studies they’re running, they may ask me to undergo a spinal tap (I’ve done five so far), but mostly it’s memory and neural testing. Once, a different UW department asked me to take part in an Alzheimer’s study that required an MRI: a Star Trek-like experience in which I lay down on a sort of conveyor belt that slid me into a tube that took pictures of my brain.

Some people are surprised that I want to participate in research. They ask if I get nervous about the memory testing, and even though I don’t suffer from a general fear of test-taking, the answer is: given what’s at stake, of course I do. I breathe a lot as I walk into the VA on the appointed day; I pep-talk myself about how the best strategy is to stay calm. Once the testing starts, I try to relax into it and just stay focused.

But what if one year I don’t pass with flying colors? Sure, that’s a scary thought. But if it happens, wouldn’t I want to be in immediate contact with the top Alzheimer’s researchers in my city? Wouldn’t I want to participate in, for example, a drug trial for people in the early stage? Yes and yes. And meanwhile, given my high level of fear about Alzheimer’s, it is extremely comforting to know that I’m still a high-functioning control subject.

It is also important to feel like I’m doing something for the cause of ending Alzheimer’s. I don’t have large amounts of money to donate. But I do have small chunks of time that I can gladly give. And as long as I don’t have to change a tire or carry bear spray, I’m in.

Speaking of, wouldn’t it be great if employers gave people time off to volunteer for research? As a self-employed filmmaker and writer, this is not an issue for me, but for many people it is. And if we could step up the pace of research, would that not be a wonderful thing?

Note: I wrote this post for the Alzheimer’s Association’s brand-new regional blog: check it out here.

Registration is open for Introduction to Memoir Writing at Seattle Central College. Starts February 11, 2015. Six Wednesday nights. Non-credit = all inspiration, no stress!

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

 

Why I Volunteer for Research, Part One

EndAlz

Here are two of the many things that scare me: having to change a tire all by myself (because I’ve never done it) and camping in bear country (because I have). Here are two of the few things that don’t scare me: taking pop quizzes and getting poked with needles. These slim categories of fearlessness make me a natural volunteer for Alzheimer’s research.

My mother grew up in Montana and nothing much scared her. She not only changed tires, she put chains on tires by herself, tying them together with shoelaces if they didn’t fit right, lying under the car in a snow storm. As for camping, after a twenty-year hiatus, she decided to try it again—solo, with four children in tow. We didn’t see any bears. The worst thing that happened was that we forgot spoons for our cereal. The best thing was being with Mom, far away from all of her city responsibilities, laughing along with the rest of us as we slurped our Raisin Bran and milk from our cups.

Mom was the kind of person you would put last on your list of People Likely to Get Alzheimer’s disease. She was smart and lively and fit; she taught high school English and read like crazy; she weathered two divorces and the loss of her third husband and raised six kids alone. But somehow, Alzheimer’s found her, and it found her early. She was in her late fifties when she suspected something was wrong, was finally diagnosed at 66 and dead at 74. Meanwhile, my siblings and I were marrying, raising kids, building careers and trying to help her cope with this awful hand she’d been dealt. (You can read about it in my memoir, Her Beautiful Brain.HBBfinalcover

What was so frustrating, of course, was how little we could do for our mother. Medicine offers no antibiotic, no chemotherapy, no surgery or drugs beyond a few pills that might slow the progression of dementia. We could give her our time, ourselves, the joy of grandchildren, the pleasures of a walk or chocolate or music. What we could never give her was our sorrow and rage about Alzheimer’s. So what could we do with those emotions?

One answer I found: volunteer for research.

For me, it started by accident. Twelve years ago, I looked up the University of Washington Alzheimer’s Disease Research Center (ADRC) in the phone book (remember phone books?) and gave them a call. I was seeking scientists to interview for a documentary about Alzheimer’s disease. But the administrator surprised me with a question of her own.

“Why don’t you volunteer for research?” she said. “As a control subject. It could be part of your film.”

QUIBRO_hires2And so, as I wrote in my book, I found myself in a room at Seattle’s huge VA Hospital, where the ADRC is located, taking all the memory tests I’d watched Mom flunk. The tests start with questions like, What day is it? Who is the president? and progress through tasks like spelling WORLD backwards, listening to a paragraph and recalling details ten minutes later, repeating back sequences of numbers, remembering short lists of words, distinguishing the words for colors from the actual colors, going back to that paragraph and recalling it again, going back to those numbers and doing the sequences in reverse order.

Despite my test-taking bravado, was I nervous? You bet. Am I glad I did it? Definitely.

To be continued…

Note: I wrote this post for the Alzheimer’s Association’s brand-new regional blog: check it out here. 

 Registration is open for Introduction to Memoir Writing at Seattle Central College. Starts February 11, 2015. Six Wednesday nights. Non-credit = all inspiration, no stress!

 I’ll be reading from Her Beautiful Brain at Ravenna Third Place Books on Thursday, February 12 at 7pm. You can pre-order it from Third Place or from the small or large bookstore of your choice. Find a bookstore here. Order the Kindle version here.

 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.

Being Fragile

IMG_1380Human beings are fragile, though we prefer not to dwell on this. We prefer to celebrate our resilience, our strength, our endurance. But in the end, we are fragile, because we are mortal. Some living things—for example, the bristlecone pines of Nevada’s Great Basin—can live for a thousand years. Not us. Not a single one of us. Not ever. Unknown

Mortality is what Atul Gawande wrestles with in his book, Being Mortal. Gawande is a surgeon, and he is trained to fix broken humans so they can go back to being strong and resilient and busy. But when his own father was given a diagnosis that both father and son knew was incurable, Gawande realized how ill-prepared he and his parents—both also doctors—were to accept what medicine can’t do to fix things. And he realized he and his family weren’t alone in this. He began to look around his world, the world of surgery, oncology, all kinds of high-tech solutions to human fragility. He started asking hard questions about how and why doctors so often aggressively treat terminally ill patients—frequently causing great distress and discomfort—and why they so rarely ask questions about what their patients might actually want from life in their final years, days or months. He sought out people who were trying to do things differently, and learned from them how to ask the right questions. A piano teacher with, at most, weeks to live, told him what she most wanted was to leave the hospital, go home, and be given just enough pain relief to enable her to teach as long as she could. She got it, and in her last days, her students played a final recital for her in her house.

Gawande also takes a long look at what life is like in America for people who may still have years to live, but who have reached that most fragile phase of all: old age. He questions whether safety—the stated priority of most adult children, when they look for a place for their parents to live—should really be our number-one concern in housing the elderly. What about joy? Meaning? The dignity of privacy; the pleasures of community? Gawande tells the story of how one assisted-living residence was transformed when dogs, cats and 100 parakeets were brought in. He also looks at programs to help seniors stay in their homes by zeroing in on small things: finding someone nearby they can call to change a lightbulb, or take them grocery shopping.

It may sound like a tough read, and at times it is. I wish he had wrestled more with the emotional and ethical challenges posed by Alzheimer’s disease and other dementias. But Being Mortal is ultimately an uplifting book because Gawande seeks and finds examples of how we can do better at facing mortality: our own, and that of the people we love. His focus is on the medical end of the conversation, because, he contends, we have come to view old age and death as medical challenges. He wishes this was not the case, but given that it is, he wants us to think about ways to steer the conversation from what the intensive care unit or nursing home has to offer to what human beings nearing the end of life really need and want.

Gawande writes that he “never expected that among the most meaningful experiences I’d have as a doctor—and, really, as a human being—would come from helping others deal with what medicine cannot do as well as what it can.”

After reading Being Mortal, I felt less fragile. Less fearful. There’s something about facing fear head-on that does that, especially when you’ve got a good guidebook. 

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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.

Registration is open for Introduction to Memoir Writing at Seattle Central College. Starts February 11, 2015. Six Wednesday nights. Non-credit = all inspiration, no stress!

 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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