Love in the time of Chaos

2019-11-07T15:28:53-08:00Categories: brain, dementia, politics, Uncategorized, writing|Tags: , , , , , , |

What is so fascinating, in this new and disorienting era in which we’re now living, are the connections that form amidst the chaos. Last week, I was in Olympia for Alzheimer’s Advocacy Day. What a day of connections: of hearing and sharing stories; of witnessing the love that motivates families living with Alzheimer’s to go to the state capitol and talk to their representatives, even in this chaotic season when so many other causes cry out for their attention. If you—or your husband, wife, mother, father, friend—are living with Alzheimer’s, you are accustomed to a baseline level of chaos. But when there’s a sense that chaos has been unleashed in the world on a larger scale, too, life can feel very—untethered.  My mother’s Alzheimer’s disease began to rapidly accelerate in the summer and fall of 2001. She was quite unaware of the events of September 11. This may have been a blessing for her, but to us it was alarming. The country was in chaos. Our mother’s brain was in chaos. How to care for her, whether and where to move her, were the urgent questions that crowded our minds, even as we worried about war and terrorist threats. And then there was the daunting and dismaying challenge of explaining it all to our children—explaining not only what was happening in our country, but what was happening to their grandmother’s brain. Our hearts were breaking for her, and for the world, all at the same chaotic time. “Let love reign,” is the symbolic message of the [...]

At the Edge of the World

2019-11-07T15:31:55-08:00Categories: brain, dementia, feminism, politics, Uncategorized, women's rights, writing|Tags: , , , , , , , , |

            This is where I am: on the sandy, foamy, whitecapped edge of America. Last time I visited this beach, I wrote about the epidemic of earthquake fear then sweeping the Northwest, following the July 2015 publication of ­­­­­­­­Kathryn Schulz’s New Yorker article, “The Really Big One.” Maybe it’s just as well to be out on the wide-open Washington coast when the big one hits, I speculated. It would all be over pretty quick: one big, obliterating tidal wave. Boom. And here I am again, feeling like the Big One did just hit us. It didn’t wipe us out. Yet. But it shook us to our core; challenged assumptions we’d held for months; changed the way we see ourselves and everyone else. Now we’re all rummaging through our psychic wreckage for salvageable scraps of energy, optimism, drive. We’re sorting useful anger from destructive anger. We’re demanding of ourselves that we learn to understand the people we quite recently referred to as Haters. We’re exhorting each other to eat, sleep, exercise, hug and read about a hundred articles a day. I have been reading a lot, and I’m sure you have too. Here are a few post-election essays I’ve found really useful: Dame Magazine's Don’t Tell Me to Calm Down, by Heather Wood Rudúlph ; Rebecca Solnit’s essay in The Guardian, Don't Call Clinton a Weak Candidate, and, for when you’re ready to stop keening and take constructive action, New York Times' columnist Nicholas Kristof’s A 12-Step Program for Responding to President-elect Trump. But I’ve also been thinking often of Hillary [...]

How Trump Made Me Love My Day Job

2019-11-07T15:33:47-08:00Categories: dementia, economics, film, health & medicine, human rights, politics, Seattle|Tags: , , , , , |

       As I write, Donald Trump supporters are lining up outside a stadium about thirty miles north of here for a rally that begins many hours from now. This is confusing to me. Lining up for Trump? Who are they? Yesterday, my husband and I met an immigrant family of nine and talked to them about how a local non-profit is helping them through their grief over the death of their baby girl. Last week, we visited an Adult Day Health Center that serves people who have dementia or have suffered brain trauma. We talked to a woman in her fifties whose face lit up with joy as she described how the time she spent at the center had given her the courage to go back to work after a stroke. The week before that, we interviewed a Seattle teacher who found an affordable apartment for herself and her son, with the help of a housing non-profit. This is our day job: making short films for non-profits to help them raise money and spread the word about what they do. August is always a busy time for us, as our clients get ready for their fall events. We feel very lucky that we get to do this work for a living. That we get to hear, and tell, stories about people helping people. Stories that debunk, over and over again, the American myth of rugged individualism; that show how much we Americans can do, when we pay attention to one another’s needs. When we are able [...]

What We Say Matters

2019-11-07T15:41:52-08:00Categories: brain, dementia, faith and doubt, health & medicine, memoir, midlife, politics, work, writing|Tags: , , , , |

I’m thinking about the power of words this week, even more than I usually do. A word can be a weapon. A word can be a force for good. Words can heal or hurt. In a few days, I’ll be participating in a conference organized by the University of Washington School of Nursing called Elder Friendly Futures, and one thing we’ll talk about is words: how the words we choose define—no, become—what we think. And not just which words, but exactly how we say them: Elder can connote respect—or decrepitude. Friendly can sound saccharine—or inviting. And what about Futures? It’s the “s” that is intriguing, isn’t it, with its suggestion that there are many possible futures that could be friendly for elders, not just one. Vice President Joe Biden is an elder. Perhaps barely so, by today’s ever lengthening standards. He is 72 years old. But more than his actual age, it is his scars and the way he wears them that give him Elder status. This is a man whose wife and daughter were killed in a car crash when he was 29 years old and newly elected to the Senate. Now, more than 40 years later, he is again freshly grieving: this time, the death of his son Beau from brain cancer. How does he keep going? What makes his life meaningful? Faith. Service. In other words, the ability to see the larger world outside your own small world, even when your eyes are clouded with tears. For most of us, this is a [...]

My media adventures

2019-11-07T15:43:29-08:00Categories: brain, dementia, health & medicine, memoir|Tags: , , , |

Alzheimer's disease is so hard to talk about. Or write about, or make films about. But here's what I'm learning this summer: focusing on volunteering for Alzheimer's research is somehow easier, and if it's a way to get people to talk about this deadly illness that now affects 5.3 million people and costs our country $226 billion a year, then I'm willing to do it. And if you actually saw me on Fox News' Health Talk and you're inspired to volunteer for research, here's the Alzheimer's Association's Trial Match page. Go for it! As I wrote about earlier this summer in the Wall Street Journal, you will feel more useful than you ever have in your life. I am forever grateful to Dr. Manny Alvarez and his wonderful producer, Paula Rizzo (check out her lively website and book on productivity, Listful Thinking) for inviting me to share my experiences on Health Talk. I'm still taking in the crazy whirl of it--lights, camera, makeup--but hoping, more than anything, that a few viewers are persuaded to volunteer. I volunteer for my mom. But I also do it for myself, and my children, and their future children.  And for the millions of people, worldwide, who are living with Alzheimer's now, or will be someday soon: unless, that is, there's a research breakthrough. Which is more likely to happen if more research volunteers step up. Remember, you don't have to have Alzheimer's, or have it in your family; control subjects are always needed. Buy Her Beautiful Brain from the small or large bookstore of your [...]

Beyond the Trail

2019-11-07T15:46:19-08:00Categories: arts, brain, dementia, hiking, memoir, nature, reading, Seattle, writing|Tags: , , , |

  “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, dark—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 [...]

Diagnosis

2019-11-07T15:48:20-08:00Categories: brain, dementia, politics|Tags: , |

 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. I 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. The 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 [...]

The Un-cool Writers’ Club

2019-11-07T15:49:19-08:00Categories: brain, dementia, faith and doubt, family, film, midlife, work|Tags: , , , |

 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. It’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 [...]

The Accidental Lobbyist

2019-11-07T15:49:53-08:00Categories: brain, dementia, politics|Tags: , |

We 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 [...]

Watching Still Alice

2019-11-07T15:50:44-08:00Categories: brain, dementia, film, memoir|Tags: , , , |

“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.           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 [...]

Why I Volunteer for Research, Part Two

2019-11-07T15:55:37-08:00Categories: brain, dementia, family, health & medicine, midlife|Tags: , , |

Although 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 [...]

Why I Volunteer for Research, Part One

2019-11-07T15:56:11-08:00Categories: brain, dementia, health & medicine, midlife, writing|Tags: , , , |

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. [...]

Being Fragile

2019-11-07T15:56:56-08:00Categories: brain, dementia, health & medicine, midlife, reading|Tags: , , , |

Human 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.  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 [...]

Whole Hearted

2019-11-07T15:58:10-08:00Categories: brain, dementia, faith and doubt, family, film, reading, Uncategorized|Tags: , , , |

“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 [...]

Alzheimer’s + Anger

2019-11-07T16:03:16-08:00Categories: brain, dementia, writing|Tags: , , , , , , , |

I am not an angry person. I’m not. I’m sure I’m not. So why, then, am I riveted by Greg O’Brien’s rage? O’Brien is an investigative reporter who, as Maria Shriver put it, “is embedded in the mind of Alzheimer’s, which happens to be his own mind.” Five years ago, at 59, O’Brien was diagnosed with younger-onset Alzheimer’s. Now, O’Brien told Shriver in an NBC interview, “60 percent of his short-term memory is gone in 30 seconds.” And it fills him with rage. When he can’t remember how to dial his cellphone. When he looks at a lawn sprinkler and can’t remember what it is. When suddenly “you don’t know where you are, who you are, or what the hell you’re doing.” When you recognize that there will never be enough research dollars directed towards Alzheimer’s until people understand that it’s not always a disease, said O’Brien, that “you get at 85 and then you die, and who gives a s*it.” O’Brien’s memoir, On Pluto: Inside the Mind of Alzheimer’s, is coming out in October. I look forward to reading it. I know it won’t be sugar-coated. I’m glad. O’Brien was fresh in my mind when, a few days later, I read about 16-year-old Alicia Kristjanson of Edmonds, Washington. Kristjanson will be walking in the upcoming Walk to End Alzheimer’s in honor of her father Doug, who died of the disease this year at age 49. She told the Edmonds Beacon she “would never wish what I went through with my father on anyone else, not [...]

August

2019-11-07T16:04:46-08:00Categories: dementia, midlife, travel|Tags: , , , |

 August is a misunderstood month. “Nothing gets done in August,” people say. “Everyone’s on vacation.” But who is everyone, and what exactly does vacation mean? Below this surface fiction of hot, languid days, college freshmen pack up and get ready to step out of the only life they’ve ever known and into a new one they can’t quite imagine yet. Young couples get married. Babies conceived on cold winter nights are born on warm summer mornings. Teachers write lesson plans. Schoolkids—well, they’re probably still in happy denial, though a few might secretly look forward to being a whole year older than last year. And some of us have books coming out, not long after Labor Day. Call me a late bloomer, because I am, but publishing my first book this fall feels in many ways just as scary as going off to college. I was an early-bloomer then. I left home for college at seventeen. And all through that long-ago August, a stranger stood in my bedroom, reminding me that I was about to step off a cliff. The stranger was a suitcase. I’d never owned one. Never needed one. But here it was, my own classic, rectangular, sky-blue Skyway, a high school graduation gift from my grandparents: quietly waiting for me to fill it. Quietly reminding me, every day, that the Skyway and I would soon be flying east into a different universe called college. A universe I longed to love but didn’t know yet if I would. Didn’t know yet that there would be [...]

The Longest Day

2019-11-11T09:24:40-08:00Categories: brain, dementia, health & medicine|Tags: , , , , |

On the longest day of the year, the Alzheimer’s Association wants you to think. Use your precious and, God-willing, still-intact brain and think. Spend five of those one thousand glorious minutes of summer solstice daylight thinking about the people you know who are dealing with dementia and what the words “longest day” might mean to them. The Alzheimer’s Association is betting you do know someone whose spouse, parent, grandparent, aunt, uncle, friend or neighbor is living with Alzheimer’s disease. Someone who knows the loneliness of caring for a person who once had so much to say and now says nothing at all, all day long. Or maybe she says the same thing over and over again. Or maybe he speaks, but it makes no sense. Maybe she or he is sundowning—there’s a good “longest-day” word—but in the dementia world, sundowning is not so pretty. It means getting agitated and cranky and sometimes even scary right when the rest of the world is getting ready for bed. The longest day. Where my ancestors came from, it was and is a day of celebration. Of joyous gratitude for summer light and warmth. And many of the people who are in the early stage of Alzheimer’s are going to be able to enjoy the longest day of the year just as much, if not more, than the rest of us, because no one is better at living in the moment than people who can’t remember. If you can no longer follow a book or a movie, then why not [...]

Bookstore Love

2019-11-14T12:01:48-08:00Categories: brain, dementia, reading, Seattle, writing|Tags: , , , , |

Restless Brain Syndrome strikes again. Early this morning, my mind was like a pinball machine that had me reaching for a Post-it and scribbling inscrutable phrases in half-asleep handwriting: follow up on A, send an email about B, and for God’s sake, don’t forget about Z. But the thought that made me sit straight up was this: Ann! Why haven’t you told everyone you know to save The Date? That date would be September 7, 2014 at 3pm: the book launch for my memoir, Her Beautiful Brain, at the Elliott Bay Book Company. To you, Seattle may be the fastest-growing city in the United States, an epicenter of technology, global health, outdoor sports and online shopping. To me, Seattle is the big small town I grew up in. The town that taught me to love books. And bookstores. As a very young child, the library was my first temple of book love. Then, just about the time I was allowed to go without a grownup to the University Village Shopping Center, a bookstore about as big as my bedroom opened across the breezeway from Lamont’s Department Store. It was called Kay’s Bookmark. Rarely could I afford to buy an actual book, but Kay didn’t seem to mind. Maybe she understood that kid-browsers like me—the ones who were more comfortable in her store than they were in Lamont’s—might be her future customers. A handful of years later, about the time I was in the teen-angst-reducing habit of taking long bike or bus rides to more interesting parts [...]

Dementia-friendly World

2019-11-14T12:00:41-08:00Categories: brain, dementia, health & medicine, midlife, Seattle, urban life|Tags: , , , , , , |

 For a few years after she was diagnosed, my mother said the words, “I have Alzheimer’s disease” out loud, in public and often. She was in her mid-sixties, looked young and fit, spoke like the retired English teacher she was. She understood that the clerk in the grocery store or the waiter in the restaurant would be more patient with her if they knew why it was taking her so long to find her credit card or sign her name. So she told them. She spread those little learning moments wherever she went. I was the one who couldn’t get used to it. (I wrote a whole book about not getting used to it.) The looks we got in return—surprise, pity, shock—made me squirm. But later, when I had to say it for her because she no longer could, I remembered those early-stage days with a sort of wistful nostalgia. My indomitable mother looked the world in the eye and asked not for pity but for patience. And you know what? When you ask for patience, you often get it. My mother went public because it made sense. She was being her practical, problem-solving self. She probably would have scoffed at the notion that she was a pioneer; helping to build what the Alzheimer’s Association calls a “dementia-friendly community.” And because I am now as old as she was—57—when she began to wonder if something might be wrong with her brain, I have to wonder if I would be so brave. No, I don’t wonder. I [...]

Happy Mother’s Day

2019-11-13T16:18:03-08:00Categories: dementia, family, memoir, midlife, parenting, urban life|Tags: , , |

 Once upon a time in Seattle, a little girl went downtown with her mother and baby sister and had a grand adventure. They may have shopped at Frederick & Nelson. They could have sipped milkshakes in the Paul Bunyan Room. But the excitement meter started spinning like crazy when the car broke down. I was that little girl. What I remember is this: the pale green Pontiac thudded to a halt. Mom twisted the keys and the steering wheel. The car wheezed weakly—and then went silent. Mom sighed, got out, opened the back door, scooped up baby Lisa from her car bed and motioned for me to slide across the vast back seat. “What are we doing?” I asked, as I scrambled down to the sidewalk. “Are we going to visit this castle?” We were standing in front of a brick building with a grassy courtyard and white columns flanking the oversized front door. Mom laughed. “That’s not a castle, honey. That’s an apartment building. And look—here’s a bus stop right in front of it! Are you ready for your very first bus ride?” Was I ever. This was a trip downtown I would never forget! And I didn’t. As I wrote in my memoir, Her Beautiful Brain, “In my three-year-old mind, it was the ideal moment: the complete safety of Mom; the thrilling adventure of the bus. Our mother was the opposite of fear, the opposite of worry, the handler of everything.” It’s that castle-like apartment building that kept this scrap of memory alive for me. [...]

Happy Birthday, Gloria Steinem

2019-11-13T16:36:10-08:00Categories: brain, dementia, memoir, midlife, politics, writing|Tags: , , , , |

Happy Birthday, Gloria Steinem. If you are what eighty looks like, then there is hope in this world. And it is high time I thanked you for a few things. First: Six years ago, for two weeks of my life, you gave me courage to get out of bed. It was April 2008. A cold April: frost every day, even a few snow flurries. Every morning, I huddled under the covers in my cottage at Hedgebrook, the Whidbey Island retreat for women writers, reading your brilliant book of essays, Outrageous Acts and Everyday Rebellions. You have to understand, Gloria: I did not deserve to be at Hedgebrook, because I was not a real writer. Documentary filmmaker, occasional journalist, effective public affairs bloviator—you could call me all of the above. But writer? What was Hedgebrook thinking, giving me a cottage for two weeks on the basis of a script I’d written for a doc film about Alzheimer’s disease? It was you who gave me courage to get over myself, get out of bed and start writing. Your honesty—about being a Playboy bunny, about your mother’s mental illness, about being a woman—inspired me to write honestly. Your voice—frank, funny, humble, confident—inspired me to try out my own. I was writing about my mother, too. Or trying to. Her birthday is also March 25th. She would have been 83 today, had Alzheimer’s not marked her and claimed her far too young: at 74, after nearly two decades of relentless assault. Even though my mother was just a few years [...]

Local Heroes

2019-11-13T16:39:22-08:00Categories: brain, dementia, health & medicine|Tags: , , , , , , , |

This is a local-hero story, about a pair of heroes you probably have never heard of. Their secret world headquarters is an unglamorous maze of cubicles in the sprawling Veterans Affairs Puget Sound Health Care headquarters on Seattle’s Beacon Hill. They look like they could be Clark Kent’s father and Lois Lane’s mother. But for twenty years, they’ve been doggedly researching two illnesses most of us would rather not think about: post-traumatic stress disorder—PTSD—and Alzheimer’s disease. As one of them likes to quip, they specialize in “people who can’t remember and people who can’t forget.” I first met Doctors Murray Raskind and Elaine Peskind ten years ago, when I began work on a documentary film about Alzheimer’s disease. After I interviewed them, I wound up becoming one of their control research subjects. Dr. Peskind is known for her expertly gentle touch in administering lumbar punctures—better known as spinal taps. She has tapped me five times to extract samples of cerebro-spinal fluid for use in Alzheimer’s research. All I have to do is lie curled up and still for several minutes: a pretty modest contribution to the cause of finding out what might cause, or cure, an illness that currently affects five and a half million Americans. Raskind and Peskind’s PTSD research happened almost by accident. Because the University of Washington’s Alzheimer’s Disease Research Center is physically located at the VA, Dr. Raskind, a psychiatrist, was asked, about twenty years ago, to advise a support group for African-American Vietnam veterans. Of the many issues members of the [...]

The Writers Are Coming

2014-02-25T13:20:00-08:00Categories: arts, brain, dementia, memoir, writing|Tags: , , , , , , , , , |

    When I opened this week’s Sunday Seattle Times, the first thing I saw was a big color ad for commemorative Super Bowl 48 bookends. Fully sculpted, cold-cast bronze, showing “Seahawks players in action!” Not available in stores! And only $49.99, payable in two easy installments! I looked up “cold-cast bronze” so you won’t have to. It means the sculpture is made from a resin mixed with powdered bronze, which gives it a surface, quote, “similar to traditionally cast bronze, at a fraction of the cost.” Just FYI. But what struck me about the ad was this: why bookends? In what way do books relate to football? Why not just make a Seahawks Super Bowl cold-cast bronze statue to place on the coffee table in front of the flat-screen TV, so you can see it every time you fire up ESPN? Maybe the Bradford Exchange Collectibles people heard about one of Seattle’s other claims to fame, which is that we are one of the most literate cities in the country. The second, after Washington DC, for the fourth year in a row. The Central Connecticut State University study tracks six factors: number of bookstores, educational attainment, Internet resources, library resources, periodical publishing resources, and newspaper circulation. Or maybe the cold-cast bronze makers got wind of Seattle author Ryan Boudinot’s campaign to get the United Nations to declare Seattle an official UNESCO City of Literature. A part of UNESCO’s Creative Cities program, such a designation would not only acknowledge what we all know—Seattleites love books—but help [...]

The Cover

2019-11-13T16:45:31-08:00Categories: arts, brain, dementia, family, midlife, women's rights, writing|Tags: , , , , |

The first cover I saw was gorgeous, but I knew immediately it was not right for my book. And that certainty made my heart sink, because this is my very first book and this was the first and most important step in the design process and right out of the gate, I was going to have to be the bad guy. My book is called Her Beautiful Brain. It’s a memoir about my mom and her younger-onset Alzheimer’s disease and how it changed our lives: hers, mine, everyone’s in my big, loving extended family. It’s a sandwich generation story, about raising young children while my mother started to crumble: first slowly, then very fast. It’s a late-20th-century story, about a miner’s daughter from Butte, Montana who weathered divorces and widowhood, went back to college and back to work, raised six children and was the strongest woman I ever knew. It is not about a woman who ever had much time or inclination to knit. So when I saw that first elegant cover design, which showed a black silhouette of a woman’s head, in profile, with a bright pink ball of yarn inside it, one long strand of yarn unraveling out of her head and down the center of the frame, I thought: no. I don’t want a ball of yarn anywhere near this cover. Too literal? Maybe so. But I also didn’t like the notion of Alzheimer’s disease as an unraveling, because let me tell you, it is not. A brain affected by Alzheimer’s disease is [...]

Brain Museum

2013-12-09T10:15:22-08:00Categories: arts, brain, dementia, film, human rights, travel|Tags: , , , |

Just when I thought I was done writing about the brain, there I was in Lima, Peru, standing face to face with an actual brain floating in a glass globe. I was in a small museum called “The Brain Museum.” Although I have visited many other quirky, out-of-the-way sites in Peru in the past month, I truly did not intend to visit this one. I was quite sure my Peru agenda had nothing to do with Alzheimer’s disease, my mom, her brain or brains in general. My husband and I have been in Peru working on a documentary film project that has to do with a clinic named after my great-uncle, who lived here for 25 years. But we’re also doing a few days of filming for a global health fellowship program affiliated with the University of Washington. And that’s how I found myself face to face with a floating brain, the focal point of an assemblage sculpture called “Custodia, Estudio 1,” created by artist Jose Luis Herrera Gianino. A custodia—or “monstrance” in English—is a glass container on a stand that is used in some Catholic churches to display the communion host, or wafer, representing the bread Jesus broke and shared with his disciples at the Last Supper. “This is my body, broken for you,” Jesus said. “Take, eat, in remembrance of me.” In earlier eras, a custodia was sometimes used to display relics: bits of the bone, hair or clothing of saints. Here, floating in front of me, was the most intimate relic imaginable of [...]