therestlessnest

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

Hallelujah

Unknown“Love is not a victory march,” wrote Leonard Cohen. “It’s a cold and it’s a broken hallelujah.” And it plays in my head, this lyrical fragment, quite often. (The Jeff Buckley version, may he rest in peace.) I find it profound and beautiful and even hopeful, though my sense of what it means changes from day to day. When I hear it, or think of it, I picture two people who love each other, embracing. Perhaps crying. One has just forgiven the other, I imagine. Or one has just been marked for death, or a long departure. Something is broken. Some cosmic chord has gone cold. Nothing could be further from what they are feeling than victory. And yet they are more intensely aware of their love, in this instant, than they have ever been.

The name of the Buckley album that includes Leonard Cohen’s Hallelujah is “Grace.” A difficult concept if there ever was one: spiritual grace, that is, as opposed to ballet or Mozart or Matisse. But though it may be difficult to describe, there are moments in life when grace is visible. Palpable.

And the last two weeks have been full of those moments.

“I will never be able to hold her again. But I forgive you,” sad Nadine Collier to the expressionless face on the video monitor, the face of the man accused of murdering her mother, Ethel Lance, and eight others at Emanuel African Methodist Church in Charleston, South Carolina on June 17th. jones_pict

“I forgive you.” Startling words. Powerful words. Over and over again, the family members of the nine who were killed that day said those words. And in doing so, they gave all of us the gift of witnessing grace. A broken, beautiful Hallelujah.

Fast forward a handful of days. The hallelujah train began to pick up some serious steam, as it headed right for the United States Supreme Court.

First came the Affordable Care Act: saved from its umpteenth and, God willing, final court challenge, on a six to three vote. Then the 1968 Fair Housing Act—47 years old, and still fighting off threats to the very basic notion that housing discrimination on the basis of race is indeed against the law—it, too, was saved, on a five to four vote.

And then on Friday, came Supreme Court Justice Anthony Kennedy’s grace-filled, historic phrase: Equal Dignity. Kennedy’s explanation of the high court’s ruling that the Constitution guarantees a right to same-sex marriage was long and often poetic. Quote, “As some of the petitioners in these cases demonstrate, marriage embodies a love that may endure even past death,” Kennedy wrote, and in conclusion, “They ask for equal dignity under the law. The Constitution grants them that right.”

But there was still more grace to come that morning. After applauding the Supreme Court’s ruling, President Obama was off to South Carolina to attend the funeral of Reverend Clementa Pinckney. And when I turned on the radio and heard him end his eulogy by singing, a capella, in a voice as out-of-tune as my own, “Amazing Grace”—I laughed and cried.

Grace is like that. “How sweet the sound:” yes, even when love feels cold and broken by nine senseless deaths. Sometimes—as it was on Friday at the Supreme Court and in South Carolina—love is everything, all at once: it is a victory march, triumphing over hate, and it is cold and broken and grief-stricken, and yet it is still a resounding Hallelujah.

This just in: my OpEd in the Wall Street Journal on volunteering for research, published Monday, June 29.

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

Beyond the Trail

IMG_1864  “End of Maintained Trail,” read the sign. “Travel Safely. Leave No Trace.” We had hiked the 3.1 miles up to Glacier Basin in Mt. Rainier National Park on a mid-June day that looked like late July: wildflowers everywhere, sky bluer than blue, glaciers looking decidedly underfed. I could use that “end of maintained trail” metaphor to riff about global warming, couldn’t I? But my mind is traveling in a different direction. More of a life direction. More of a… what it might feel like to get a scary diagnosis direction.

For 5.3 million Americans living today, that diagnosis is Alzheimer’s disease, and it may as well come with a trail’s-end message attached: This is the end of the maintained trail, pal. Sorry. Travel safely. Oh, and leave no trace of your fears and feelings because frankly, the rest of us can’t handle hearing about it. For their family members, the diagnosis message is the same: your life, too, will now proceed on unmarked terrain. There will be rocks, some slippery, others sharp. There will be immoveable boulders. Crevasses of anguish. The endless putting of one foot in front of another, as you wonder what lies around the next switchback or over that looming ridge.

The Alzheimer’s Association recently switched its awareness month from November—cold, barren, Printdark—to June: mild, lush and flooded with light. At first, I didn’t get it. November had always seemed like the perfect Alzheimer’s Awareness month to me. But I think the point is to get us all thinking about just how long the days are for people with Alzheimer’s and their caregivers. What a marathon this diagnosis is. What a steeplechase—a better word, with its implied challenges and roadblocks and muddy sinkholes.

June in the Northwest is often a steeplechase sort of month in which it’s never quite safe to plan a picnic or plant something that might not respond well to a sudden chill or storm. It’s a month in which you never quite know expect. The only thing you do know is that the days will be long, and one of them will be the longest day of all. And mostly, we view that as a good thing: those long, creamsicle Solstice twilights and sunrises; those nights that even at midnight, never seem fully dark.

logo       On this year’s Solstice, Sunday, June 21st, I’ll be participating in an Alzheimer’s Association event: a “Longest Day” write-and-readathon at Seattle’s University Bookstore. It’s our first year, so we’re not quite sure what we’re doing and we’re definitely not going to try to keep it up for all 16 hours between dawn and dusk. But for four hours in the afternoon, our goal will be to read and write in honor of someone we love who is a caregiver or is living with or lived with Alzheimer’s disease. For me, that will be my mom. I don’t know yet if I’ll write about her or Alzheimer’s—I’ve done quite a bit of both. Maybe instead I’ll write about some of the things she loved to do. Or her favorite books and authors. Or how she might have liked to fill a Solstice day if she were alive and well. ArleneYoung

Mom’s life was never much of a maintained trail. She scrambled and improvised all the time, which made her a great role model for her six children, especially as we tried to figure out how best to help her when Alzheimer’s began to rumble like an avalanche after a June rain. But she was an English teacher. She loved reading and writing. I like to think she really would be honored by a write-and-readathon, on the year’s very longest day.

1904066_484139051691653_1188410800_nThe Details: June 21, 1 to 4pm, University Book Store, Seattle, the Alzheimer’s Association’s Longest Day” write-and-readathon: Join us! or come for the Open Mic reading at 3pm.

Just in: a new review of Her Beautiful Brain from Full Life Care blog editor Kavan Peterson. I am so honored to be speaking at Full Life’s fundraising breakfast in October. You can buy Her Beautiful Brain from Amazon or any independent bookstore. Find a bookstore here. Order the Kindle version hereHBBfinalcover

 

Dining Alone

IMG_1068     Cacio is an old central Italian word for cheese, but I didn’t know that until I looked it up later. What I wondered, as I crossed Second Avenue on a silky spring night, was whether it might mean “gift:” as in, a gift for me; the gift of a restaurant where I would have the courage to sit and dine alone on a Friday night in New York.

On any night, the East Village is chock-a-block with groups of friends and tightly clinched couples. These days, the trendiest restaurants have lines out the door and deafening crowds in the bars. But Cacio e Vino was a quieter place, just around the corner from my friend Lisa’s apartment, where I was staying. Its garage-style windows were rolled up, its tables invitingly half-outdoors. I thought I could do it.

I knew I needed to do it. I was hungry and thirsty and fresh out of mojo. I wanted to do it. But after 27 years of marriage, dining out, alone, is something I just never seem to do. Or maybe it’s something I have forgotten how to do.

11228506_10152771366521394_8112740348622402682_n         Funny thing is, the week I’d just spent in New York had been all about female empowerment with a capital E. With the help of Lisa, who is president of the Women’s Media Group, I gave my first New York reading from Her Beautiful Brain at Book Culture on Columbus Avenue. Later in the week at Book Expo, I was on a panel of women entrepreneurs. I spent one evening with old friends from my all-women’s college and one with new friends, fellow authors with my all-women’s publishing company, She Writes Press. IMG_1813I even had a ten-second encounter at Book Expo with Julianne Moore, who was signing copies of her latest children’s book, in which I managed to thank her for her Oscar-winning performance in Still Alice and, gulp, give her assistant a signed copy of my book.

By Friday afternoon, I was ready to rest. Lisa went out to see her mom in Brooklyn. We had plans to meet up later, but Lisa called to say she needed to stay put in Brooklyn. It’s OK, I assured her. I was exhausted, and I had an early flight the next morning.

And so that is how I came to be dining alone on a Friday night in New York.

You must do this, I told myself. It’s too beautiful an evening to get take-out and hide in the apartment.

I walked in to Cacio e Vino. The waiter offered me a choice of tables. I chose to look out on the street instead of hiding along the wall. He brought water and bread with fragrant oil. I ordered a glass of wine and a plate of pasta with zucchini, mint and goat cheese. Mint! Why not?

I didn’t have a book with me and I didn’t want to stare at my phone, so I pulled out a pen and a few note cards I’d bought. But for a long while, I simply sat and sipped and ate slowly, gazing out at the soft lights along the avenue, watching the New Yorkers walk by.

A young couple, oblivious to all but each other, stood outside Cacio e Vino for several minutes. Eventually, they came in, which made me happy, because I knew they’d love it. And because the sight of me, a solo diner so quaint as to have note cards and a pen on the table, had not scared them off.

It’s strange now to try to articulate the reasons why I might not have sat down and enjoyed that solo meal. Was it that I did not want to be looked at and pitied? Was I afraid someone—a man, most likely—would spoil my solitude by trying to strike up a conversation? This is much less likely to happen to me now, in my fifties, than it once was, and maybe that bothered me, in some illogical way. Was it the money? Did it feel too indulgent, spending restaurant dollars on me, alone? But here’s the real question: would a man ever, ever go through these mental hurdles before he took a seat at a restaurant table for one?

What’s odd is that sometimes I secretly daydream about dining alone. When I’m at a restaurant with other people, I have thoughts like: oh, that small plate would be the perfect thing to eat alone. And yet back in Seattle, if an evening comes along when I could actually do such a thing, I never do. But maybe now I will. Because here’s what I learned, last Friday night in New York: after a week of wall-to-wall empowerment, it was wonderful to be alone, and taken care of by a good waiter. As if I deserved it.

HBBfinalcoverBuy Her Beautiful Brain from the small or large bookstore of your choice. Find a bookstore here. Order the Kindle version here. An audiobook version will be available later this year.

Lost & Found Mom

IMG_1085When I saw that dirt-colored linoleum, I knew I had to act. Fast. Thanks to my mom, I knew how. Yellow pages: rugs. Phone. Directions.

“Vicky,” I said to my brand-new college roommate, “will you go in with me on a rug? It’ll cost us 40 dollars.”

She said yes. And so off I went, via bus and subway, into a Boston neighborhood not normally frequented by Wellesley College freshmen from faraway states. I bought the rug: short nap, sky blue. I truly can’t remember how I got it back to the dorm.

What caught me by surprise was how impressed my roommate and hallmates were. To me, this was a logical reaction to a crisis of ugliness. To them, it was all about me being a plucky Western girl, an Annie Oakley who got stuff done. But I knew the truth, which was that I had simply channeled my inner Arlene: my mom, that is, and the example she had always set of moving right past hand-wringing and right into making things better.

I always wince when I use the words “lost” and “mom” in the same sentence. Because she’s not lost. She’s right Arlene and 6 kidshere, inside me. I am sure my brother and sisters feel the same way. She was and is far too powerful a beacon to be “lost.” Gone, yes, and too young: Alzheimer’s started stealing bits of her when she was my age and kept at it for quite a long time. She died in 2006, at 74, after many years during which she did indeed appear to be lost inside an unforgiving forest of plaques and tangles.

And yet she wasn’t. She was right here, inside, the whole time. And she still is.

I saw my freshman roommate, Vicky, just last weekend. I stayed with her in North Carolina; we attended our friend Lindsay’s daughter’s wedding. Of the three of us, I was the one taking a break from the duties of motherhood. Watching Lindsay in action reminded me of how much Mom had enjoyed every one of her six children’s weddings. Two of us gave her the chance to enjoy two weddings, and in each case, she embraced the second as enthusiastically as she had the first. And watching Vicky stay calm and out of the way as her youngest made it to the college finish line also reminded me of Mom, who was always a cheerleader and moral supporter but never a meddler in our young adult lives.

Vicky is an Episcopal priest. A highlight of my visit was seeing her in action in her beautiful white and gold robes. Her homily was inspired by the beautiful passage from the letters of John about how God is love, and how love casts out fear.

This was my mother’s great gift: to love us in a way that helped us overcome our fears.

Buying a rug may not be the most dramatic example. But I was 17, I had never lived away from home, and I needed to do something that felt like taking action, that felt like saying no to all my fears about living in this concrete and linoleum room 3,000 miles from Seattle. All I had to do was find my inner Arlene: the mom I’m forever finding, not losing.

I know I’m not alone in having had a mother like mine. I know that what she did is what loving moms simply do: love unconditionally, and teach their children to do the same. Because love is stronger than fear. It’s what keeps us from getting lost.

HBBfinalcoverMy next reading: May 26, 7pm: Her Beautiful Brain reading, Book Culture, 450 Columbus Ave, New York 

Buy Her Beautiful Brain from your favorite bookstore. 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.

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.

 

 

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