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Archive for the category “politics”

At the Edge of the World

img_2785            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 Rodham Clinton, the human being. Not the superhuman political candidate, but Hillary. She’s too strong to need our pity. But what about empathy? What about taking a few minutes to think about what it must be like right now to be her? That’s what I’ve been pondering. I’m glad she has Bill and Chelsea; I’m glad she has dogs to walk, woodsy paths to walk on, grandchildren to cuddle up with. I’m glad she has time, although it must feel utterly strange to so suddenly have it. I’m sure time was really the last thing she expected to have right now.

On Wednesday night, Hillary gave us a brief public glimpse of what her life has been like since the Big One hit. Long before the election, she’d been invited to speak at a gala for the Children’s Defense Fund, the organization where she worked as a young law student. She admitted that she had been tempted to stay home. Instead, she showed up for her long-time mentor, Children’s Defense Fund founder Marian Wright Edelman, and gave an emotional speech about the need to protect vulnerable and nonwhite children from hate talk and hate crimes; about how all of us must “believe in our country, fight for our values and never give up.”  17clinton-master675

My hope for Hillary is that someday soon, she can have a good laugh at this crazy cosmic joke. I don’t mean that she—or we—will ever be able to laugh it off. The stakes are too high; vigilance must be our default mode. But the kind of laugh where you just howl loudly, saying to yourself something along the lines of —this is so insane!—that kind of laugh can be cathartic. It can actually break through the torpor and sadness and make it possible to eat some toast and start your day.

After all, the only way the Republicans could beat her was to run an evil clown instead of someone who could in any way be construed as her peer. For a while, we all thought it really might be some crazy joke. Until it wasn’t. But that doesn’t mean we can’t take a break from fundraising, organizing, marching, volunteering and vigilance and laugh, now and then, at the absurdity of it all.

Go for it, Hillary. You deserve it.

Want to send Hillary a card or letter? Here’s her address: PO Box 5256, New York, NY 10185. 

HBBfinalcoverA final note: Hillary Clinton and Tim Kaine were the only candidates who ever talked about the importance of funding Alzheimer’s research (which WAS on the agenda for the December legislative session, until Congress signaled its intent to wait on appropriations until March 31). Just another reason I’m grateful to her. 

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#Election2016: Countdown

         img_2763   It has never, ever felt so good to seal and stamp an envelope as it did after I filled out my ballot last week. Sure, I miss the old ritual of going to my local polling place, but sitting down and getting it done at home, good and early, felt great. Especially this year.

Of course, especially this year.

And now I’m going to tell you a few of the people I voted for.

I voted for the third graders I tutor in an afterschool program. One of them told me last week he was “so scared Donald Trump was going to win.” The others all chimed in. “We’re scared too!” “I hate Trump!” All of them are from refugee families; most come from Somalia. I wondered what they’ve been hearing at home. Can you imagine how horrifying it is to watch this election unfold, if you’re a refugee from anywhere—but especially from a Muslim country?

I also voted for another refugee: Henry Grundstrom, my great-grandfather, who, according to his naturalization papers, “foreswore his allegiance to the Czar of Russia” to become a United States citizen in 1898. Henry was from Finland, then under the Czar’s thumb. If he had stayed, he would have faced conscription into the Czar’s army. What would he have thought of allegations that Russian hackers could be trying to influence this election?

I voted for Viktor Warila, my other Finnish great-grandfather, who staked a homestead claim in Montana in 1910 and raised six children on the windswept bench lands between Billings and Yellowstone.

I voted for Lydia Warila, his wife, who traveled west from Ellis Island with her name and destination pinned to her coat, because she spoke not a word of English.

I voted for my Scottish forebears, who built houses in the Carnation Valley and on Queen Anne Hill, and for my Swedish great-grandfather, who left his Minnesota home at 18 and headed to Alaska for the Yukon Gold Rush.

I voted for my elegant grandmother, an orphan, who gave herself a whole new name when she was a teenager, because in this country you can do that. Because do-overs are in our DNA here. Unless you are Native American or your ancestors were brought here against their will, your people, too, came here because they wanted—or needed—to become something new. Just like my Somali students’ parents. And here’s the part that is apparently very hard for some Trump supporters to understand: in this country, we allow do-overs that don’t rob you of your core identity. You’re allowed to keep your religion, customs and language. My grandparents grew up speaking Finnish at home and attended Finnish Lutheran churches. Many of the Somali students in my neighborhood are trilingual: they speak English at school, Somali at home and learn Arabic in their religious classes.

I also cast my ballot in honor of my mother, who would have been SO thrilled to vote for the first woman ever to be a major-party candidate for president.

And I voted for my college: Wellesley College, Hillary Clinton’s alma mater too, which has been educating women since fifty years before we could legally vote for president, and whose founders wanted the college to prepare women for “great conflicts” and “vast reforms in social life.”

For Hillary Clinton, Wellesley was just the beginning of a lifetime of preparation for great conflicts and vast reforms. And for her, and for every woman in America, this election is much, much more than an opportunity for symbolism. It’s our chance to say: the great conflicts we face are real. Vast reform is needed. We need a president who knows these truths, and is ready to get to work.

That’s who I voted for. Let the countdown begin.

 

Imperfectionism: a manifesto

images-3Here’s what gave me joy during the first presidential debate: Hillary Clinton’s smile. Sure, she might’ve practiced in front of the mirror, and I don’t fault her for that. As she told Donald Trump, she believes in preparing, both for the debates and for being president. But what her smile signaled so effectively was something else, something I would call her new imperfectionism. It’s no wonder she looked so joyful: if you’re Hillary Clinton, it must be a great relief to have moved beyond the futile grind of flat-out perfectionism. And I think we women can all learn from her.

I’m not arguing that she was not brilliant that night. She was. But her tone, her ease, and best of all that bemused, transcendent smile told me that not only is she confident and ready to govern, she is now beyond inured to the type of male posturing in which Donald Trump invests all of his strategic energy. This is an important trait in a first female president. It is one she has honed over the decades, especially as Secretary of State. While Trump has been sharpening his negotiating skills by belittling tenants, employees, contractors, and beauty pageant winners, Clinton has been steadily building her ability to hold her own with hard-to-handle men, from her husband to five-star generals to heads of state.

hillary-clinton-chocolate-chip-cookies-recipe-wewanthillary-the-world-of-hillary-clinton-2016Remember when she was first lady, and she baked those cookies just to show she could? That was perfectionist Hillary, responding to a media pile-on that was all about how uncomfortable the country was to find out that the new first lady intended to use her brain while residing in the White House. How great it must feel to not have to pull that kind of stunt anymore.

images-4I’m sure debating Donald Trump is not her idea of a fun gig. But what we saw Monday night is that Trump’s behavior is not so shocking to most women, including Hillary Clinton.

During the debate, my daughter texted from a bar in a mountain town that Trump was “giving her PTSD for every time she’d had a horrible demeaning argument with a man.” As her mother, it makes me sad to know that at 27, she’s already had that experience plenty of times. As a fellow female human being, my reaction is: of course she has, because she likes to talk about issues that matter, which means she is invariably going to feel that familiar frustration: the kind that simmers and bubbles as you get interrupted, talked over, put down, dismissed, patronized, ignored.

Men are allowed to be imperfect—temperamentally, intellectually, physically, behaviorally—by both their fellow men and by women. Women are not. It starts early, and it never ends. And one good thing that just might come out of the frenzied conversations of this election season is this: maybe we will finally embrace the beautiful reality of the imperfect female role model. The woman who is not both brilliant and a cookie-baker.

Men are also allowed to put on weight, wear strange orange comb-over hairdos, scowl, roll their eyes and mug for the camera, even as they criticize the appearance of a beauty pageant winner or the stamina of a former Secretary of State.

My own father thinks it’s OK to ask me questions like this one, over lunch a few weeks ago: “Do you think Hillary has put on weight?”

“Dad. I cannot believe you just said that,” I replied, or at least I think I did. How can I remember, when all my hot buttons were instantly on blood-red alert?

But Hillary’s debate smile is giving me a courageous new model. Hey, grown-up Ann, her smile tells me, don’t take the bait. Don’t sputter and turn red and instantly recall how fat you felt in college when you were binge-eating cereal out of the box. Instead, smile at your dad. Practice in front of a mirror. Give it that serene, Hillary-esque, “Wow, you’re old-fashioned, but I’m OK with that, because I have moved on with my own evolution!” kind of feel.

And that’s the new post-perfectionist Hillary Clinton. She knows she’s smart and strong and imperfect too. What a great role model for us all. images-5

Seattle friends and film-lovers: our new documentary, Zona Intangible, makes its festival debut at the Seattle Latino Film Festival this Saturday at 2pm at the Varsity Theatre. Join us! 

 

 

How Trump Made Me Love My Day Job

th-3       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 to truly see each other, and recognize that we are all connected.

Which is why it is so hard for me to understand the Trump supporters who are standing in that line. I wonder who they are, and how it is they came to actually support this candidate who stands for slammed doors and high walls and connections based only on hate and fear.

The people I meet in my work are not the West Coast bubble-dwelling limousine liberals Trump loves to disparage. They are people who have rolled up their sleeves to actually find solutions to the toughest problems we face: homelessness, affordable housing, how to help vulnerable people weather trauma, loss, illness. How to make our schools better. How to protect our wild places for the next generation. If I dwell in a bubble, it is one in which compassion and inclusion are the norm. It is one in which people are allowed to be poor, or new to this country, or different in abilities, and dignified at the same time.

The interviews we do are my favorite part of the job. I love to listen to peoples’ stories. I love it when they surprise me, which they nearly always do. What’s much harder is what comes next: going back through those interviews, selecting the very best bits, and laying them out in an order that makes sense. It’s so important to me to get their stories right, especially during a year when slandering whole groups of people has become the Trumpian norm.

So I’m going to get back to work now. Thanks, Trump, for inspiring me to appreciate my day job even more. And I think we all know your rally is not going to make a difference in how our state votes. Because not very many of us live in your bubble. Thank God.

Here’s some inspiration to put on your calendar: A reading by writers who have experienced homelessness, September 12 at 7pm at the University Branch of the Seattle Public Library. Check out  Nicole Brodeur’s Seattle Times column about the Mary’s Place writers and their writing group leader, Julie Gardner.

 

 

 

The Journals Project

IMG_2699 This may look like July 2016 to you, what with the political conventions, heat waves and all. But if you ask me where I am on any given afternoon, I might say 1994. Or 1992. Or, not too many weeks ago, 1978. It is the summer of the Journals Project: the season I re-read my hand-scrawled life, transcribing not all of it—that would be WAY too brutal a task—but some important scraps. Morsels.

I began keeping a journal when I was 13, so I have a lot of years to get through. The good news is that I did not (and do not) write every day. Sometimes I’ve skipped whole months, or more. But it’s taking me a while, because—sort of like eating Thanksgiving dinner—I can do it for no more than an hour or two at a time. There are only so many rich, nostalgia-laden bites a girl can take in one sitting. IMG_2697

My self-imposed assignment is to look for anything having to do with God, faith, loss of faith, doubt, mortality and/or the meaning of life. It’s research for my next book, known for now as The Observant Doubter. Me being me, there’s a generous sprinkling of all of the above.

In my very first volume, I wrote by candlelight, and used a fountain pen: a smudgy, spill-prone choice for left-handed me. But I can still remember the clink of the pen in the bottle, the scratchy sound of the nib, the smell of the ink.

In the beginning, I wrote a LOT about God. I had fallen hard for an Evangelical/ Episcopal version of Christianity that had arrived at my childhood church via a youth minister who radiated joy. I yearned to glow with the love of God, like he did.

But gradually, my fervent faith subsided, and other subjects took over. I gave up on fountain pens and switched to felt tips, so I could write faster. Guilt, always a theme for me, shifted from feeling guilty because I was a bad Christian to feeling guilty because I ate too much or I didn’t study enough to, eventually, that special Mt. Everest of guilt that young mothers climb every day: no matter what you do, you’re letting someone down. You’re not doing something well enough.

My transcriptions are peppered with “oy” in parantheses: shorthand for, Hey 2016 Me, can you believe how much time you spent berating yourself for your shortcomings? In 1976, 1980, 1992, whenever?

“It’s so agonizing, this business of being pulled in a thousand directions,” I wrote one January morning when my children were one and four. “I want to be a good mother. I want my life to have meaning; I wish I could find meaning in the minutiae of everyday life.”

Oy. How I wish I could go back and tell myself: STOP. News flash from the future: it’s gonna be OK. You are loving your children and living your life and you just happened to be born into a time when the neatly laid table of family life was upended and everyone—including you, your husband, your family, your workmates, neighbors and all those perfect preschool parents you felt you could never ever measure up to—began to scramble and squabble about how it should now be reorganized.

Wow, it was confusing. Wow, it was impossible to get it all right.

And now: a quarter century after I watched Bill Clinton’s inauguration with a toddler on my hip and a baby on the way, stunned and grateful that we now had someone in the White House who had invited Maya Angelou to write and read an inaugural poem, here we all are again, still squabbling over what life in America should look like. One candidate wants to take us back to… where, exactly? The mythic America of girdles and grills; of happy white people who have no neighbors who do not look like them?

The other candidate may have been born into some version of that world, but long ago, she boarded the outbound train into the bumpy future where most of us actually live. Where women are allowed to have aspirations, even if that’s going to complicate their family life. Where fathers and mothers want to find meaning in the world and meaning at home. Through all these turbulent years recorded in my messy pages, Hillary Clinton has been working away, miles ahead of me. Making her own mistakes. Learning from them. Moving on. Preparing herself to be, as President Obama put it, the best-prepared presidential candidate we have ever had. hillary-clinton-and-obama-obama-750x400

As I continue to slog through the journals, knowing that she has prevailed over all the crazy roadblocks life has put in her way helps me to see that we as a nation and we, as women, have made progress. And will make more progress. But we’ve got to get her elected. Don’t feel guilty about how much time you can or can’t give to the cause: just do something. Just show up. I’m doing it not just for me, now, but for me, then: that fervent teen. That overwhelmed young mom. The ever-scribbling seeker of meaning that I still am.

 

#Enough

th          You know how it is. You don’t want to feel numb. You know that numbness is just pain postponed. Novocained. You know that, in order to get through this, you’ve got to feel.

And so you go about your day. You get in the car. You turn on the radio. Some of the speakers are inspiring, Donald Trump is horrible, but none of them are quite breaking through your numbed skin.

It’s the victims and those who grieve them, of course, who finally do break through. It’s the young man talking about frantically texting his 20-year-old best friend. It’s the front-page grid of faces: so many beautiful young people, smiling, being silly, being their young selves. It’s the story that writer Dan Savage told on the radio, choking up as he told it, of Brenda Marquez McCool, a single mother of 11 and cancer survivor, who died because she stood between the Orlando killer and her son Isaiah. At 2 in the morning at a gay nightclub, she saved the life of her son: as Savage pointed out, a previous generation would have found it stunning that she was even there, with her gay son, his adult life just beginning and hers beginning again after cancer. Or so they had hoped.

And then it was the two Sandy Hook parents on the radio, a mom and a dad, each of whom lost a child in the Newtown, CT school massacre on December 14, 2012. For more than three years, Nicole Hockley, who lost her son Dylan, and Mark Barden, who lost his son Daniel, have been on the radio, on the stump, online, in the papers and on TV, trying to get assault weapons banned.

“Gun violence is preventable,” Hockley and Barden both said, several times in several different ways. Gun violence is preventable, I repeated to myself as I went for a tearful walk. It’s not cancer. It’s not Alzheimer’s disease, which took my mom, too young. We can’t ban plaques and tangles from our brains. We can’t bar cancerous cells from invading our bodies. But we can ban assault weapons. Here’s the Sandy Hook Promise website. Give what you can to help them. Send an encouraging tweet or note to Connecticut Senator Chris Murphy, who as I write is filibustering the Senate in support of gun control. Tell your senators to join him. (Mine is: Hats off to tireless WA Senator Patty Murray!)

A few months ago, I rented a car at San Francisco International Airport. I was assigned a stop-sign red VW bug, which made me feel happy and confident as I drove down to my friend’s house in Palo Alto. The next day, wearing a red dress that matched the car—pure coincidence! So Californian, so karmic!—I drove a few miles more to meet another friend. When I returned to the car, it wouldn’t start. I tried everything I could think of. Finally, desperately, I called my husband back in Seattle to see if he had any last-minute ideas, before I called a tow truck.

“Did you try putting your foot on the brake while you turned the key?” he asked.

Had not occurred to me. Not for a second.

I put my foot on the brake, and the car started right up.

Sometimes you just have to put your foot on the brake.

Just stop fearing people who aren’t like you, so you can start getting to know them.

Just stop the Senate down for a filibuster, like Senator Murphy: so that we can start getting assault weapons out of the hands of would-be murderers.

Just. Stop.

Upcoming reading: June 23, 7pm, with Hollis Giammatteo at King’s Books in Tacoma. And an upcoming screening too: our documentary film, Zona Intangible, premieres June 26, 6pm at the Rainier Arts Center in Seattle.

 

What We Say Matters

IMG_1415I’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 learned skill, and the price of such an education is high, sometimes higher than we can bear.Joe_Biden_Stephen_Colbert_YouTube_img

In a riveting TV interview, Biden told CBS Late Show host Stephen Colbert about a quote from Danish philosopher Søren Kirkegaard that his wife Jill taped to his mirror: “Faith sees best in the dark.” Biden used it as a way to talk about faith as the place you can go: even, or perhaps especially, when you feel like your faith is imperfect, or gone altogether. It seemed important to Biden to present his faith humbly. Modestly. He chose words like solace and ritual. It was a moment in which words, carefully but honestly selected, drew us in: whether or not we share Biden’s faith, whether or not we want him to run for president.

There was another public profession of faith last week that was exactly the opposite: Kentucky court clerk Kim Davis, jailed for refusing to grant marriage licenses to LGBTQ couples, triumphantly proclaimed, on her release, that she wanted to “give God the glory,” because, “his people have rallied, and you are a strong people.”

What she meant was clear: her God is not about finding people when they’re lost in the darkness of grief. Her God is about taking sides. Kicking people out of the club. Words are powerful. When Davis said, “you are a strong people,” she meant people who believe, as she does, that gay marriage is wrong.

Maybe Davis, who is 50, will choose different words when she attains the hard-earned status of elder, in about 20 years. Maybe not. But as I think ahead to the Elder Friendly Futures Conference and ponder what those futures might look like, Joe Biden’s empathy and wisdom give me hope.

second-wind-cover1In his stereotype-busting book Second Wind: Navigating the Passage to a Slower, Deeper, and More Connected Life (think about the positive power of those words: slower—deeper—more connected), author Dr. Bill Thomas writes, “Elders have access to a reservoir of feelings and access to a level of emotional control and insight that far exceeds that available to adults… At this moment in history for both cultural and planetary reasons we need elders more than ever before.”

IMG_1075Yes. And when we realize how much we are going to need their wisdom and insight as we face all kinds of global and local challenges, our elders’ futures take on a whole new importance. As does the importance of nurturing our own wisdom, as we move toward our own elder futures, which I truly hope will be friendly.

Registration is open for Introduction to Memoir Writing at Seattle Central College. Starts November 2, 2015. Six Monday nights. Non-credit = all inspiration, no stress!

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

 

 

Hallelujah

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

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

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

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

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

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

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

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

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

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

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

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

Diagnosis

IMG_1669 Imagine: your doctor knows you have cancer, but chooses not to tell you or your family. Unthinkable, isn’t it? And yet consider this: fewer than half of all seniors diagnosed with Alzheimer’s disease or their caregivers are actually told of the diagnosis.

I just spent three days in the other Washington at the national Alzheimer’s Association’s Advocacy Forum. IMG_1661I was one of a thousand volunteers. We were loaded up with all kinds of facts and figures to use in conversations with all 12 of our Washington state senators and representatives and their super-smart aides. But that factoid about diagnosis is the one that stuck with me. Really? Really: 55 percent of seniors diagnosed with Alzheimer’s and their caregivers are not told.

If the issue was that 55 percent of doctors assume someone with dementia would not remember their diagnosis, so why bother, then surely they would at least tell that person’s family caregiver. But no, in 55 percent of cases, they don’t even do that.

I can tell you many dire and alarming facts about Alzheimer’s disease. For example, it is now the most expensive disease in America. This year, we will spend 226 billion dollars on caring for people with Alzheimer’s. That number is expected to soar to 1.1 trillion in 2050.

Two thirds of those dollars come from Medicare and Medicaid. EndAlzThe other third comes out of the pockets of overwhelmed families. None of this is sustainable, which is why one thousand of us were on Capitol Hill trying to make the case for funding research now—the goal is effective treatment, prevention or even a cure by 2025—so that we won’t be facing demographic and economic disaster later.

But that business about diagnosis not only got my attention, it got the attention of just about everyone we talked to. Why? Because it screams, louder than dollars, everything that is wrong with the way we view Alzheimer’s disease. It says: we have no reason to hope. There’s nothing to offer people who are diagnosed. Better they continue to muddle along, not knowing. None of which is true. There is hope, aka progress on the research front, and there will be more, especially if we start adequately funding the scientists who are working as hard as they can on everything from genetic decoding of the disease, an area where huge progress has been made in recent years, to finding ways to reduce or even dissolve plaques or otherwise alter brain chemistry. And it is not better for families to muddle along, not by a long shot. A diagnosis of dementia calls for both long-term planning and short-term safety and lifestyle changes, including emotional support for both the person with Alzheimer’s and their family members.

A doctor’s decision not to share a diagnosis is so redolent of the bad old days, when they could get away with being that patronizing. When patients were not perceived as having rights, or even dignity. And it evokes shame and stigma: surely you wouldn’t want to speak out loud about an illness like Alzheimer’s, now would you?

One of our goals on Capitol Hill was to persuade lawmakers to support the HOPE for Alzheimer’s Act, which was introduced for the fourth time this year. The HOPE Act ensures that Medicare patients who are newly diagnosed with Alzheimer’s disease are not only told of their diagnosis, they will have a detailed discussion with a health care professional about treatment and support options. Pretty simple. Pretty important.

When my mom was finally diagnosed after nearly a decade of wondering what was wrong with her brain, of feeling that shame and stigma that it might somehow be “her fault,” such a conversation would have been a miracle. We had no idea what to expect or what we should do. It’s long past time to make sure that doesn’t happen again.

And thankfully for us, my sister had the good sense to call the Alzheimer’s Association.

For more Alzheimer’s stories, news and resources, check out the AlzWA Blog, where this piece is also posted. 

HBBfinalcoverUpcoming readings: April 1, 7pm, St. James Cathedral Pastoral Outreach Center, 907 Columbia Street, Seattle. 

April 30, 7pm: The Regulator Bookshop, Durham, NC

May 26, 7pm: Book Culture, 450 Columbus Ave, New York

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

 

 

 

The Accidental Lobbyist

EndAlzWe were five for five. The first five legislative aides we visited all had personal connections to Alzheimer’s disease: three grandmothers, one aunt and one best friend’s grandmother. This could work, I thought. We could build support, one aide’s grandma at a time!

“Building support,” also known as “lobbying,” is a word that has acquired a lot of baggage in the last five or fifty or 250 years, depending on how you’re counting.

“Did you lay some sports tickets on the desk when you walked in?” my son asked.

“Yeah, right,” I said. “Doesn’t quite work like that on the nonprofit side of the fence.” But the question did make me wince. Because in truth? The day I spent walking around Olympia with a purple sash tied, beauty-pageant style, from shoulder to waist made me proud to be a volunteer lobbyist. I was one of 105 humble foot soldiers who showed up to help the Alzheimer’s Association make the rounds. Most of us were rookies. Fortunately, we were matched up with experienced staffers who’ve done this before. My team leader was Janet Ceballos, social services manager for the Western and Central Washington chapter. Seven times, I watched her approach a state lawmaker’s reception desk, her face friendly but determined, her palm-sized note card handy in case she needed it.

We weren’t on a hard-sell mission. In 2014, state lawmakers passed a bill establishing an Alzheimer’s Disease Working Group, whose job it is to come up with ways our state can cope with the predicted dramatic increases in the need for dementia care over the next few decades. We may not be Florida, but we have a sizable Baby Boomer cohort that is likely to stay right here in Washington as they age. This will be a nightmare if we don’t plan ahead. So our goal, as we walked from one office to another, was to remind lawmakers of how important it is to continue to support this work.

What you never know, when you bring up Alzheimer’s, is whether the person you’re talking to has any personal connection to the disease. What is increasingly clear is that just about everybody does.

“This feels good,” said one member of my team. “It’s democracy in action.”

Yes it is, and yes it did feel good: to be making personal connections instead of sending emails or “liking” Facebook posts. (Check out these happy pictures on the Chapter blog site: good feelings all around!)

And about those purple sashes: at first, I was hesitant. Weren’t they just a bit too Miss America-esque? But then I noticed how my fellow volunteers stood up a little straighter and walked a little taller once they got their sash on. And there was no mistaking what the sash meant: “Alzheimer’s Association” was written loud and proud across that purple. And as we walked, I thought of my mom, who lived with Alzheimer’s disease for a long time, and the looks people would sometimes give her, if she said something odd or repeated herself or couldn’t add up her change. I thought of how I would feel: first embarrassed, then angry that I was allowing myself to feel embarrassed. So it felt good to wear the sash: for Mom. For all those times when I allowed the stigma of Alzheimer’s to sting.

Momandme1998     Just wearing that sash might have been the best message we volunteers could deliver to Olympia. Because what we were saying, to the aides whose grandmothers have the disease and to everybody else, is: we are done with shame. We’re done with stigma. We’re ready to roll up our sleeves and get to work on that state plan, and we hope you are too.

HBBfinalcoverBuy Her Beautiful Brain (4th on the Ravenna Third Place Books’ current bestseller list!) from the bookstore of your choice. Find a bookstore here. Order the Kindle version here

Upcoming reading: Friday, March 6, 7pm, Mt. Baker Park Presbyterian Church, Seattle. It’s a group reading–poetry, fiction, memoir–and I’ll be sharing new work from my next book (working title: The Observant Doubter.)  

Radio lovers: you can hear the Restless Nest commentaries every Tuesday at 7:45 a.m. on KBCS, streaming online at kbcs.fm and on the air at 91.3 in the Seattle area. Podcasts available too.

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