therestlessnest

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

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.

The Old Old House

IMG_1462“It’s not that far out of the way,” I thought, as I turned right towards Lake Washington instead of left towards the freeway. “And there won’t be any traffic, because everyone’s inside watching the Seahawks game.”

The Old-House Drive-By: surely I’m not the only one who does it.

I’m not talking about the house I moved out of three years ago, the house where I raised my children. I’m talking about the Old-old house: the house where I grew up.

As Seattle houses go, it’s a dime a dozen: just another Tudor cottage on a north-end street. But it is still standing, which you can’t count on any more in this town. In fact, it is so close to the ever-expanding campus of Children’s Hospital that its future is not in any way certain.

Why do I do it? The drive-by. It’s not like my childhood was a perfect idyll. It’s not like every memory I associate with that house was a happy one. But it is where I became who I am. Where I grew from the chubby five year old I was when we moved in, to the awkward pre-teen with the pointy glasses I was when my dad moved out, to the college girl I was when we all moved out. Home after my first-ever year out of the country, distracted by my first-ever real romance, I was not really taking in what my mom had just told me: we were leaving the Hansel and Gretel cottage and moving to her new husband’s house. We had two weeks to pack.

We packed. We left. We were all distracted that summer. And so we didn’t really give the house a proper good-bye. Maybe that’s why I keep circling back. Why I found myself, on this dark December night, driving the deserted North end arterials that are imprinted on my brain in a way the arterials of the South end, where I have lived for 24 years, are not.

As I approached the house, I kicked into a familiar version of high alert, butterflies beating inside, as if I was about to do something—forbidden. I slowed down. I kept my eye on the rear view mirror. No cars coming: I could dawdle.

The curtains were open. Through the glass of the old leaded windowpanes, I could see a Christmas tree in the corner next to the mantel. The white lights on the tree made the stucco walls glow. I could just glimpse the dining room through the archway where we had all crouched on the morning of the 1965 earthquake. I couldn’t see any people—they must’ve been in another room, perhaps watching the game. But the house looked alive, as in: full of the life of the family that lived there. As it should look. As I would wish it to look.

How lucky I am, to be able to see that. So many of the brick apartment buildings in Seattle, built in the same era as our Tudor cottage, are now giving way to glittering high-rises. My mother’s childhood homes in Butte, Montana were all sacrificed to open-pit mining. But I can still drive by, on a winter night, and see the old house: windows outlined in Christmas lights, tree in the corner, car in the driveway. Another family inside, loving and growing and going out into the world.

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!

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

Whole Hearted

IMG_1447“The Great Heart Split,” writer Gail Godwin calls it: that moment, about 400 years ago, when our knowledge of how the physical heart works leaped forward, sending ancient beliefs about the heart as spiritual headquarters backward, to be filed under folklore and mythology. News flash: the powerful, tangible pumping of the heart is what keeps our bodies alive. The heart’s emotional value, its mystical properties? Not actually located in the center of our chests. Ever since, rational knowledge has trumped what used to be called, simply, heart.

And then December comes along, and people start doing things that make no sense. We string colored lights from rooftops and balconies. We feverishly bake cookies, as if eating sweets mattered more than eating anything else. And, strangest of all, we cut trees and prop them up in basins of water in our living rooms. Even scientists and doctors do these things. And the scientists and doctors who study the brain—that mysterious organ where the intangible version of the heart has been hiding all along—they know that the protean behavior in which we indulge during this strange season called the Holidays can be both wonderful and awful for our brains, often at the very same time.

From Thanksgiving through New Year’s Day, our hearts and heads are bombarded with memories. Many are good. Some are not. If you’ve lost someone who used to be a big part of your holiday season, you’ll be feeling that pain. If you have a family member or two who ever excelled in causing holiday misery, you’ll be zapped by those memories too. And if your brain is not at its best—if you are suffering from mental illness or if you have Alzheimer’s disease or another form of dementia, then this season can be like a walk through the carnival not-so-fun house.

Several years ago, ABC Nightline aired a report called, “Experience 12 Minutes of Alzheimer’s Disease,” which has become a popular Youtube video. In it, a reporter and a caregiver put on goggles, gloves with some fingers taped, small objects in their shoes to throw off their balance, and, worst of all, headphones that emit static and gibberish, which is what many people with Alzheimer’s describe hearing in their heads all the time. They then tried, and failed, to perform a few simple tasks. It’s devastating to watch. And to think about how it would feel to be so impaired, this time of year, with all the extra stimuli of the holidays.

Chances are, you are going to cross paths in December with a relative or friend who suffers from dementia, which makes this a great time of year to try to gain a little insight into their world. But you won’t have to put on goggles and headphones to do it. Hollywood is here to help. Julianne Moore has been getting stellar reviews for her portrayal of a college professor with young-onset Alzheimer’s in the movie Still Alice, which opens in Seattle in January. While you’re waiting to see it, read the book it’s based on. Lisa Genova’s novel, Still Alice, was the first thing I ever read that captured the anguish and frustration of Alzheimer’s I remember seeing in my mother’s eyes.

Another good read is Stars Go Blue by Laura Pritchett. It’s the story of Ben, a Colorado rancher who copes by keeping notes in his pockets bearing important facts like his wife and children’s names. What drives the plot of Stars Go Blue is not just Ben’s Alzheimer’s, but his broken heart. He has an idea of how to mend it, if he can only get it done before Alzheimer’s gains the upper hand. The static in his head, the words and logic that elude him as he tries to accomplish this task—which I won’t reveal because I loved this poignant, poetic book too much to spoil it—make for a page-turning read. It’s almost as if, as his rational faculties leave him, he’s trying to go back, to function on the old-fashioned fuel of Heart with a capital H. It’s a perfect story for the holidays, when we’re all doing some version of that. Putting Reason in the back seat. Letting Heart rule.

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! 

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

 

 

 

Immigrant America

unnamedHer name was pinned to her coat, because she didn’t speak a word of English. But Lydia Westerback made it from Ellis Island to Hanna, Wyoming, where her future husband was waiting for her. He’d been waiting for nine years. It took that long for Lydia’s heart to heal after the death of her first fiancé, back in Finland. Nine years for her heart to stop hurting enough to see what Viktor Warila was offering her: not just love and marriage but a whole new world. She was 31. Her choice was stark: impoverished spinsterhood in Finland, under the rule of the Russian Czar? Or marriage, and America, with a friendly man whose letters she enjoyed but who she had not seen in nearly a decade?

Lydia and Viktor were my great-grandparents. Like all my forebears, they came here with little money and lots of hope. This might be your story too, or a part of your story. Whether it was nearly five centuries ago in Pilgrim New England, whether it was one or two centuries ago in the great immigrant waves that gave us Ellis Island and the Statue of Liberty and Emma Lazarus’ beautiful poem—you remember, “give me your tired, your poor, your huddled masses yearning to breathe free.” Whether it was 30 years ago or three years ago, we were all poor travelers at the table. Or as President Obama put it in his announcement last week of major executive action on immigration, “we know the heart of a stranger—we were strangers once too.”

Seattle Times columnist Danny Westneat wrote beautifully this weekend on the same theme. Many others have, too. So my story, of Lydia and Viktor and their reunion at a Wyoming coal camp in 1899, is hardly unique—and that, of course, is exactly the point. Exactly why I’m giving thanks, this year, for President Obama’s action, because it is such an important reminder of who we are, as a nation. Why we exist. What we represent to the world. The new, jillion-dollar fence on our southern border is a shameful testament to who we are at our worst—selfish. Fearful. Ditto Congress’ inability to pass immigrant reform legislation. But the president’s executive order, imperfect though it is, is an urgently needed course correction back towards what Lazarus’s poem invoked us to be, when she imagined the Statue of Liberty saying to the world: “Send these homeless, tempest-tossed, to me. I lift my lamp beside the golden door!”

The golden door of which she wrote led, of course, not to treasure but to backbreaking work. Just as it still does. Nothing is more wildly off the mark than recent characterizations of immigrants, legal or illegal, as “takers.” My great-grandfather was a coal miner. My great-grandmother ran a small boarding house. Then, with six young children to support, they farmed a homestead claim near Red Lodge, Montana.

I thought of them—and of Lydia’s long train trip across the West to meet her future husband—when my husband and I watched a haunting new documentary called Who is Dayani Cristal, produced by actor Gael Garcia Bernal, perhaps best known here for playing Che Guevara in The Motorcycle Diaries. Bernal also narrates and appears on-screen in short re-enactments which help tell the story of one Honduran immigrant whose body was found in the Sonoran desert. Watch it, if you can: it’s available online. It will make you thankful for how we as a nation took a step last week back towards everything the Statue of Liberty stands for. “A mighty woman with a torch,” Lazarus called her: “and her name? Mother of Exiles.”

HBBfinalcoverBuy Her Beautiful Brain 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.

5 a.m. Idea Factory

DSC01536On a good day, I call it the 5 a.m. Idea Factory; on a bad day, it’s the “pre-dawn stew.” I have also dubbed it “Restless Brain Syndrome,” which became the title of one of the most frequently browsed posts on this humble blog. Guess I’m not alone here on the insomnia journey.

But lately, I’ve been leaning positive. I’m trying to embrace my version of insomnia rather than fight it. Hence, the 5 a.m. Idea Factory. (Sometimes, it’s 3 or 4 a.m. Which is a little harder to embrace. But let’s not dwell on that.)

First: hats off to those of you who get up every day at five, either because you have to or because you want to. Seriously. I have spent a lot of time asking myself why, since I so often wake up at five, I so adamantly do not want to get up at five. In these self-to-self conversations, I have tried to employ logic (you’re awake! It makes sense!), ambition (think of all the writing you could get done!), selfishness (do it for you. Give yourself that time!) and selflessness (think how much better your husband will sleep if you get your restless self out of bed!) But no: my 5 a.m. brain may be on high alert, but my 5 a.m. body refuses all orders to throw back the covers and face the world.

One day, I listened as a woman a few decades older than I am described how she loves lingering in that time between sleep and waking, when she can just let her mind roam, sometimes dreamily, sometimes with purpose. A light bulb went off: was she saying that the pre-dawn tossing hours could be viewed as good? As something other than the maddening reason I can never stay awake through a movie that begins after 9 p.m.?

It’s not like my attitude changed overnight. I still get that sinking feeling when I look at the clock and it says four something. But here is what I have found: if I try to relax into my early morning wakefulness, if I allow my body to burrow under the covers while my mind roams, by the time I DO get up at, say, six, I might have a few new insights or ideas or—this is really the best part—a more profound appreciation of whatever came my way the day before.

For example: one recent night I went to see the Pacific Northwest Ballet’s “Director’s Choice” program of contemporary choreography. As I woke the next morning, my mind began to replay fragments of what I’d seen on stage the night before: the patterns and movements, the soaring, arching, folding bodies of dancers at the height of their physical powers, expressing every human emotion in ways that words can never match. I was so happy, in the early-morning dark, to be there again, with them.

Then I remembered the title of one of the pieces: “A Million Kisses to my Skin,” which choreographer David Dawson described in the program notes as his attempt to evoke the feeling of complete bliss dancers sometimes experience in their work. And I thought of something else Dawson said: that he has come to view his career as a dancer as a period of training for what he does now as a choreographer.

Lying in bed, I thought: maybe choreography is not so different from writing. It’s a different language, yes. But perhaps choreographers stir to wakefulness, like I do, letting dreams and life play together in search of meaning or joy or pleasant patterns. They probably slept better when they were young and still dancing several hours a day, just as I used to sleep deeply, wake to an alarm, and race off to my job as a news writer. I do miss the sound sleep. But the five a.m. idea factory has its joys. 

Her_Beautiful_BrainBuy Her Beautiful Brain 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.

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