Heart + Vitality = Courage

2019-11-07T14:51:30-08:00Categories: arts, brain, creative aging, faith and doubt, family, memoir, midlife, work, writing|Tags: , , , , , |

 “Roger-dodger on flight #97 SFO 12:25 PM May 20,” my brother John wrote to me, 43 years ago. “No sweat picking you up out of the horrors of the SF airport.” There’s more, in his rapid-scrawl handwriting on a sheet of notebook paper, and I love every word of it, even though it’s not the exact letter I’d hoped to find last night, as I lifted one envelope after another out of the plastic bin in which my letters have rested, ignored, for four decades. I pulled out every piece of mail that was addressed to me at Bates Hall, where I lived during my homesick first two years at Wellesley College. I wanted so badly to find one specific note that I knew John had written me in the spring of freshman year, when I wrote him for advice about whether I should transfer. The long New England winter was killing me. Why on earth had I even applied to a women’s college? Etcetera. What I found instead were exactly two other letters from John: one I’d long forgotten, which he was thoughtful enough to send in September (“Have you thrown yourself to the wolves at any of the cattle shows/mixers yet?”) and then the one he sent in May, after I had written to ask if I could visit him in Berkeley on my way home to Seattle. “Roger-dodger,” he replied. Which cracked me up, and then made me cry. Twice: when I opened it 43 years ago, and when I read it again [...]

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 [...]

Healing is a risky business

2019-11-07T15:39:11-08:00Categories: arts, brain, faith and doubt, feminism, film, health & medicine, human rights, journalism, war, women's rights, writing|Tags: , , , , , , , , |

Healing is a risky business. Any poet or journalist could tell you that. It’s risky, because it has to start with truth telling, and when we’re wounded, the truth is not often what we want to hear. For me, last week started with the peak experience of hearing Gloria Steinem rock Seattle’s Benaroya Hall, and it ended (or so I thought) with the peak experience of hearing Garrison Keillor read a poem written by my college friend, Dana Robbins, to a national radio audience. Gloria and Dana: two risk-takers, two truth-tellers. You know Gloria, so I’ll tell you a bit about Dana: she survived a stroke at 23 and a number of other nightmares and heartbreaks, which she writes about in her first published book of poems, The Left Side of my Life (Moon Pie Press, 2015), in which you will also find poignant poems about motherhood and about her joyful second marriage. It was thrilling to me to at last hold a book of her poems in my hand AND hear her on the radio in the same week. But last week didn't end there. Because that was Before Paris. For the Islamic State terrorists, the bloody attacks on Paris that killed 129 people were the grand finale of a two-week horror show that included claiming responsibility for the October 31 plane crash in Egypt that killed 224 people and bombings in Beirut that killed 43 and in Baghad that killed at least 26. For those of us who are slow to wake up to [...]

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 [...]

Dining Alone

2019-11-07T15:46:51-08:00Categories: brain, midlife, quiet|Tags: , , , , , , |

     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.          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 [...]

Lost & Found Mom

2019-11-07T15:47:21-08:00Categories: brain, faith and doubt, family, memoir, midlife, parenting|Tags: , , |

When 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 here, 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 [...]

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 [...]

5 a.m. Idea Factory

2019-11-11T09:17:49-08:00Categories: arts, brain, health & medicine, memoir, midlife, writing|Tags: , |

On 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 [...]

The Restless Report, Part Two

2019-11-07T16:01:38-08:00Categories: brain, family, memoir, midlife, parenting, travel|Tags: , , |

artist: Kim Goff-Harrington When our children were younger, my husband and I used to joke about our great fear that they might “rebel” against the creative, financially precarious example we have set by becoming stockbrokers or bankers. Didn’t happen! And so far, it doesn’t like it’s going to. This is good news, regarding all of us having a lot in common and plenty to talk about around the dinner table. Not so good, re our collective financial futures. But once you make the decision—or, more accurately, once you realize you’ve made the decision without noticing you made it—to value your time on the planet more than your money, it’s hard to go back. Three years ago, I wrote a Restless Nest about this called, “Oops, I forgot to get rich.” It cheered me up to write it in the midst of the recession, as we and our nonprofit clients struggled to stay afloat while the big bankers got their big bailout. But the central tenet of that piece—that time is worth so much more than money—holds up. Back to the kids, who aren’t kids anymore: they’re 22 and 25, and as I reported last week, they’re currently in Eastern Europe and Colorado, doing their own restless adventuring. Neither of them is sure what will come next. My own experience and my instincts about them tell me they’re doing exactly what they should be doing. But it’s also in my job description, as a mom, to worry. Just a tiny bit. Imagine my relief when [...]

The Restless Report

2019-11-07T16:02:14-08:00Categories: brain, memoir, midlife, parenting, women's rights, writing|Tags: , , , , |

Four years ago, a word came to me: restless. That’s me, I thought. That’s what I am: restless. And then I saw how well it went with the word “nest.” Restless Nest. Suddenly, I had a retort, a comeback, to the tiresome questions about how I was coping with our newly empty nest. “It’s not empty,” I would say. “It’s restless.” I liked saying it, because it instantly defused a whole Molotov-cocktail shaker full of flammable issues behind the words “empty nest.” There was the implied sexism—“I’m sure your husband’s fine but you must be a mess!”—and ageism: “wow, life’s pretty bleak and empty at your age, isn’t it?” And then there were my own incendiary issues: I hated the thought of my college-age children judging me and thinking my life was now empty and dull. I resented the mixed messages from well-meaning friends, which I somehow heard as: if you’re a good and loving mother, of course you are going to feel bereft when your children leave. On the other hand, if you do feel bereft, that must mean you defined yourself through your children, and didn’t we all vow thirty years ago we wouldn’t do that? Four years later, thinking about what I was thinking then makes my head spin. Because here’s one thing I’ve learned: I am not the only restless one in this nest, and I’m not just talking about my husband. Although he’s a good place to start. “Read this,” he said on Sunday, pointing to a New York Times Opinion [...]

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 [...]

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 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 [...]