American Infection

2019-11-07T14:50:44-08:00Categories: economics, health & medicine, human rights, immigration, politics, Seattle, Uncategorized|Tags: , , , , , , , , , |

Sometimes we writers search too hard for the perfect metaphor. Sometimes, it’s right under our nose—or, in my case, right under my blue, Velcro-strapped boot. Infection: that’s what Trump is, I thought this morning, as I took my nineteenth of the twenty Amoxicillin tablets we brought home from the pharmacy ten days ago. Trump has infected our vigorous, 241-year-old democracy. And like so many infections, this one is fire-engine red and spreading, unchecked and unmedicated. Meanwhile, the patient is hot with fever one day and shaking with chills the next. Nothing tastes right. Muscles ache. Vaguely flu-like feelings abound. Waves of determination to soldier through—we’ll get over this!—are followed by languorous apathy: let’s just give up. Speaking as one who tried to ignore an infection for several days, I can tell you it is not a strategy that works. After foot surgery on November 6, I assumed the three incisions on my right foot were healing up nicely under all those bandages, just the way they had on my left foot, last May. And they probably were, for the first several days. But then something somehow went wrong along one of those neat lines of stitches. At that point my foot was in a plastic cast, so I couldn’t see it. And for reasons I cannot explain, I chose to believe that feeling like my foot was on fire was probably “normal,” that fever and chills were a “part" of healing, and that I would magically “get over it.” Wrong, wrong, wrong. Thank God for antibiotics. [...]

No Mud, No Lotus

2019-11-07T14:52:18-08:00Categories: arts, faith and doubt, health & medicine, hiking, memoir, Uncategorized, writing|Tags: , , , , , |

“Most people are afraid of suffering,” writes Zen Buddhist teacher Thich Nhat Hanh. “But suffering is a kind of mud to help the lotus flower of happiness grow. There can be no lotus flower without the mud.” Thich Nhat Hanh has a remarkable ability to get my attention by saying the simplest things in fresh ways. Especially when I’m stuck in some sort of tiresome, sticky emotional mud; the kind of mud you can’t imagine could ever produce a lovely lotus blossom.            Earlier this year, I spotted his book, No Mud, No Lotus: the Art of Transforming Suffering at Elliott Bay Book Company. I thought it might come in handy as I embarked on my big 2017 foot surgery adventure. But month after month, it sat in a stack on my desk, where I mostly ignored it. When the title did catch my eye, I found it irritating. “Transforming suffering?” Tell that to my friend with cancer, Thich Nhat Hanh. Tell that to the exhausted firefighters all over the West. Tell it to the people of Houston, Florida, Mexico, Puerto Rico. Tell it to the DACA dreamers. The Syrian refugees. The millions of us who have to worry, again, that the Republicans are going to yank our health care. The sidelined career diplomats who live in fear every time our president opens his mouth about North Korea. “Transforming suffering.” Hah! I preferred the edgier acronym a neighbor taught me: AFOG. Another Fucking Opportunity for Growth. But as I sat at home this summer while my [...]

Boot Camp

2019-11-07T15:24:24-08:00Categories: faith and doubt, family, fitness, health & medicine, memoir, midlife, quiet, writing|Tags: , , , , , , , |

“You should write about This,” my friends say to me, as they take it all in: the bulky blue splint with its five Velcro straps, the twee roller cart, the pajama bottoms I’m trying to pass off as trousers. (They’re brand-new and navy-blue: surely it’s not obvious!) I’ve resisted Writing About This, until now, for many reasons, including: One, this is corrective foot surgery, not a disaster that befell me and would make for a really gripping story; Two, the prognosis is promising: This is not forever. And Three, I am getting all the help I need from my unbelievably patient husband. We are lucky enough to work from home, so these six weeks of being roller-cart-bound are not nearly as logistically daunting as they would be for most people. I have absolutely nothing at all to complain about. Right? Right. So I won’t. Instead, I’ll take a crack at the strangely surprising upside of it all: I’m learning like crazy. It’s all stuff I’ve never had to learn before, like: how to be helpless and grateful (especially on those first few days); how to ask for help (still learning, but getting better at it); how to be patient with the mysterious, and slow, process of healing (ditto, with occasional colossal backslides); how to be humble (crawling or backwards-scooting really are sometimes the best ways to get from A to B, especially in a house with stairs). Re asking for help, my husband—who is now an expert on getting asked for help 50 times a day—has [...]

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 [...]

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 [...]

From Sun to Sun

2019-11-07T15:40:52-08:00Categories: arts, film, health & medicine, human rights, immigration, memoir, Peru, reading|Tags: , , , , , , |

 “I am not an angel,” Nina McKissock told me firmly. “I’m just doing my job.” McKissock is a hospice nurse. She is also the author of a new memoir called From Sun to Sun: A Hospice Nurse Reflects on the Art of Dying, in which she tells the stories of composite patients based on many of the real people she has cared for at the end of their lives. (McKissock and I will be reading and talking together at Elliott Bay Bookstore in Seattle on Sunday, November 1 at 3pm.) From Sun to Sun is one of those books I was hesitant to read, thinking surely it will be too hard and too sad to bear. But once I started reading, I couldn’t stop. Each one of McKissock’s 24 patients became my friend for an hour or two; a friend whose story had much to teach me. “There can be great healing within the dying process,” McKissock writes in the frontispiece to the book, and though this may seem counterintuitive, she goes on to show us many examples of how it can be true. One of the most moving stories was of Eric, a 51-year-old with ALS: Lou Gehrig’s disease. Eric had watched his father die of the same illness, so he knew what lay ahead. His type-A, executive wife was heartbroken and enraged. Of course. But her anger at ALS made it nearly impossible for her to slow down and muster the patience caring for her dying husband required. When McKissock persuaded her and Eric [...]

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 [...]

Hallelujah

2019-11-07T15:45:30-08:00Categories: arts, faith and doubt, family, health & medicine, politics|Tags: , , , , , |

“Love is not a victory march,” wrote Leonard Cohen. “It’s a cold and it’s a broken hallelujah.” And it plays in my head, this lyrical fragment, quite often. (The Jeff Buckley version, may he rest in peace.) I find it profound and beautiful and even hopeful, though my sense of what it means changes from day to day. When I hear it, or think of it, I picture two people who love each other, embracing. Perhaps crying. One has just forgiven the other, I imagine. Or one has just been marked for death, or a long departure. Something is broken. Some cosmic chord has gone cold. Nothing could be further from what they are feeling than victory. And yet they are more intensely aware of their love, in this instant, than they have ever been. The name of the Buckley album that includes Leonard Cohen’s Hallelujah is “Grace.” A difficult concept if there ever was one: spiritual grace, that is, as opposed to ballet or Mozart or Matisse. But though it may be difficult to describe, there are moments in life when grace is visible. Palpable. And the last two weeks have been full of those moments. “I will never be able to hold her again. But I forgive you,” sad Nadine Collier to the expressionless face on the video monitor, the face of the man accused of murdering her mother, Ethel Lance, and eight others at Emanuel African Methodist Church in Charleston, South Carolina on June 17th.  “I forgive you.” Startling words. Powerful words. Over and [...]

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 [...]

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 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 [...]

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 [...]

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 [...]