therestlessnest

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Archive for the category “brain”

Love in the time of Chaos

img_2891What 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. EndAlz

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.

img_2886“Let love reign,” is the symbolic message of the Irish Claddagh rings my husband Rustin and I wear as our wedding bands. On this fraught Valentine’s Day, let love indeed reign. It is our best chance at finding pathways through this time of chaos. Romantic love. Familial love. Friend-love. But most of all, the compassionate love we are suddenly seeing everywhere. While I was in Olympia, Rus was filming for the International Rescue Committee: emotional stories of refugee families reunited at SeaTac after the presidential immigration ban was stayed.

Let love reign and rain: in airports, town halls, capitols, courtrooms; let it reign wherever people are saying, “We are better than this. We are more loving than this. We can find ways to help families overwhelmed by dementia; we can welcome refugees overwhelmed by long, long journeys away from war and danger.”

Last week, I was lucky. I got to witness love reigning and raining everywhere: in the stories my husband told each evening about the refugees; in the stories I heard in Olympia. So now, in that spirit, I’m offering a Valentine’s Day gift. HBBfinalcoverEmail me your address (annhedreen at gmail.com) and I will mail you a free copy of my book, Her Beautiful Brain. Those many kinds of love are all there in my story, along with more than a few kinds of chaos. I’m also happy to send it to someone you know—just give me their address. I promise not to save or share anyone’s info.

Happy Valentine’s Day from the Restless Nest. Let love reign in this time of chaos.

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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. 

Healing is a risky business

12241203_10206996887414845_2151836365820268832_nHealing 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 1442865674251Steinem 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 th_LeftSideLifefirst 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 12027805_10153834583469673_8324533815771842484_nand in Baghad that killed at least 26. For those of us who are slow to wake up to violence in places where we haven’t traveled, countries we don’t know personally, Paris was the visceral, gut-punching, week-ending shock.

For me, hearing the news will forever be oddly twined with seeing the movie Spotlight, about the team of UnknownBoston Globe reporters who broke the story of the systemic, deliberate, top-down cover-up of the cases of sexual abuse by Catholic priests. My husband and I went into the theatre knowing something awful had happened in Paris. We came out and learned the news was far worse than we’d thought. And so our conversation that evening was about how hard, but essential, it was to hear the truth about tragedies that had happened decades ago. OR hours ago.

Journalists and poets uncover old truths and new truths. They are both first-responders to fresh tragedies, and dogged researchers of outrages that have been buried but must be exhumed in order for justice to be done.

They can’t do their work without brave people willing to talk. Spotlight is all about that: about finding people who have been very badly hurt but are now angry enough and brave enough to talk about it, with the hope that by talking they will save future children from similar harm. Another movie out now, Truth, is also about finding brave people willing to go on the record. It’s the story, as told in her memoir, of former CBS journalist Unknown-1 Mary Mapes, who uncovered the important story of a young, future President George W. Bush shirking his duty in the National Guard. Mapes was brought down, along with Dan Rather and several colleagues, by one memo that had not been fully verified and was quickly seized on by the right-wing media machine—though the story itself, of Bush’s shirking, was all true. I knew Mary Mapes in the 1980s, when we both worked at KIRO TV, and she was, and is, one of the hardest-working, most dedicated journalists I’d ever met. Seeking truth is a risky business.

Sometimes, and perhaps more often in the case of poets, the brave truth-teller is the writer herself. Dana’s book begins: “They tell me I had a stroke/a cosmic joke,/like waking up a cockroach.” Of being offered a wheelchair at the airport, she writes: “How would the people who offer help in the airport know that to me/ the apparatus of disability has all the appeal of the electric chair?”

There is an unflinching quality in poetry that is a cousin of the best journalism. It’s as if poets are driven to flush out the dark corners and bring what is most frightening into the daylight. It’s very different than the urge to fictionalize or mythologize.

We need poets to say, starkly, what happened, and to give voice to grief; and we need journalists to shine their most powerful high-beam headlights on who and what is behind the tragedies we grieve and how, if it’s possible, we can heal.

As the poet Rumi wrote, 800 years ago: “Don’t turn your head. Keep looking/ at the bandaged place. That’s where/ the light enters you.”

 

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

 

 

My media adventures

Ann seated w dr Manny IMG_2903 - Version 2

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! IMG_1988As 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. Ann_Fox makeup _2873I’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.

Momandme1998I 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 choice. Find a bookstore here. Order the Kindle version hereHBBfinalcover

Beyond the Trail

IMG_1864  “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, Printdark—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 long the days are for people with Alzheimer’s and their caregivers. What a marathon this diagnosis is. What a steeplechase—a better word, with its implied challenges and roadblocks and muddy sinkholes.

June in the Northwest is often a steeplechase sort of month in which it’s never quite safe to plan a picnic or plant something that might not respond well to a sudden chill or storm. It’s a month in which you never quite know expect. The only thing you do know is that the days will be long, and one of them will be the longest day of all. And mostly, we view that as a good thing: those long, creamsicle Solstice twilights and sunrises; those nights that even at midnight, never seem fully dark.

logo       On this year’s Solstice, Sunday, June 21st, I’ll be participating in an Alzheimer’s Association event: a “Longest Day” write-and-readathon at Seattle’s University Bookstore. It’s our first year, so we’re not quite sure what we’re doing and we’re definitely not going to try to keep it up for all 16 hours between dawn and dusk. But for four hours in the afternoon, our goal will be to read and write in honor of someone we love who is a caregiver or is living with or lived with Alzheimer’s disease. For me, that will be my mom. I don’t know yet if I’ll write about her or Alzheimer’s—I’ve done quite a bit of both. Maybe instead I’ll write about some of the things she loved to do. Or her favorite books and authors. Or how she might have liked to fill a Solstice day if she were alive and well. ArleneYoung

Mom’s life was never much of a maintained trail. She scrambled and improvised all the time, which made her a great role model for her six children, especially as we tried to figure out how best to help her when Alzheimer’s began to rumble like an avalanche after a June rain. But she was an English teacher. She loved reading and writing. I like to think she really would be honored by a write-and-readathon, on the year’s very longest day.

1904066_484139051691653_1188410800_nThe Details: June 21, 1 to 4pm, University Book Store, Seattle, the Alzheimer’s Association’s Longest Day” write-and-readathon: Join us! or come for the Open Mic reading at 3pm.

Just in: a new review of Her Beautiful Brain from Full Life Care blog editor Kavan Peterson. I am so honored to be speaking at Full Life’s fundraising breakfast in October. You can buy Her Beautiful Brain from Amazon or any independent bookstore. Find a bookstore here. Order the Kindle version hereHBBfinalcover

 

Dining Alone

IMG_1068     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.

11228506_10152771366521394_8112740348622402682_n         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 one evening with old friends from my all-women’s college and one with new friends, fellow authors with my all-women’s publishing company, She Writes Press. IMG_1813I even had a ten-second encounter at Book Expo with Julianne Moore, who was signing copies of her latest children’s book, in which I managed to thank her for her Oscar-winning performance in Still Alice and, gulp, give her assistant a signed copy of my book.

By Friday afternoon, I was ready to rest. Lisa went out to see her mom in Brooklyn. We had plans to meet up later, but Lisa called to say she needed to stay put in Brooklyn. It’s OK, I assured her. I was exhausted, and I had an early flight the next morning.

And so that is how I came to be dining alone on a Friday night in New York.

You must do this, I told myself. It’s too beautiful an evening to get take-out and hide in the apartment.

I walked in to Cacio e Vino. The waiter offered me a choice of tables. I chose to look out on the street instead of hiding along the wall. He brought water and bread with fragrant oil. I ordered a glass of wine and a plate of pasta with zucchini, mint and goat cheese. Mint! Why not?

I didn’t have a book with me and I didn’t want to stare at my phone, so I pulled out a pen and a few note cards I’d bought. But for a long while, I simply sat and sipped and ate slowly, gazing out at the soft lights along the avenue, watching the New Yorkers walk by.

A young couple, oblivious to all but each other, stood outside Cacio e Vino for several minutes. Eventually, they came in, which made me happy, because I knew they’d love it. And because the sight of me, a solo diner so quaint as to have note cards and a pen on the table, had not scared them off.

It’s strange now to try to articulate the reasons why I might not have sat down and enjoyed that solo meal. Was it that I did not want to be looked at and pitied? Was I afraid someone—a man, most likely—would spoil my solitude by trying to strike up a conversation? This is much less likely to happen to me now, in my fifties, than it once was, and maybe that bothered me, in some illogical way. Was it the money? Did it feel too indulgent, spending restaurant dollars on me, alone? But here’s the real question: would a man ever, ever go through these mental hurdles before he took a seat at a restaurant table for one?

What’s odd is that sometimes I secretly daydream about dining alone. When I’m at a restaurant with other people, I have thoughts like: oh, that small plate would be the perfect thing to eat alone. And yet back in Seattle, if an evening comes along when I could actually do such a thing, I never do. But maybe now I will. Because here’s what I learned, last Friday night in New York: after a week of wall-to-wall empowerment, it was wonderful to be alone, and taken care of by a good waiter. As if I deserved it.

HBBfinalcoverBuy Her Beautiful Brain from the small or large bookstore of your choice. Find a bookstore here. Order the Kindle version here. An audiobook version will be available later this year.

Lost & Found Mom

IMG_1085When 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 Arlene and 6 kidshere, 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 which she did indeed appear to be lost inside an unforgiving forest of plaques and tangles.

And yet she wasn’t. She was right here, inside, the whole time. And she still is.

I saw my freshman roommate, Vicky, just last weekend. I stayed with her in North Carolina; we attended our friend Lindsay’s daughter’s wedding. Of the three of us, I was the one taking a break from the duties of motherhood. Watching Lindsay in action reminded me of how much Mom had enjoyed every one of her six children’s weddings. Two of us gave her the chance to enjoy two weddings, and in each case, she embraced the second as enthusiastically as she had the first. And watching Vicky stay calm and out of the way as her youngest made it to the college finish line also reminded me of Mom, who was always a cheerleader and moral supporter but never a meddler in our young adult lives.

Vicky is an Episcopal priest. A highlight of my visit was seeing her in action in her beautiful white and gold robes. Her homily was inspired by the beautiful passage from the letters of John about how God is love, and how love casts out fear.

This was my mother’s great gift: to love us in a way that helped us overcome our fears.

Buying a rug may not be the most dramatic example. But I was 17, I had never lived away from home, and I needed to do something that felt like taking action, that felt like saying no to all my fears about living in this concrete and linoleum room 3,000 miles from Seattle. All I had to do was find my inner Arlene: the mom I’m forever finding, not losing.

I know I’m not alone in having had a mother like mine. I know that what she did is what loving moms simply do: love unconditionally, and teach their children to do the same. Because love is stronger than fear. It’s what keeps us from getting lost.

HBBfinalcoverMy next reading: May 26, 7pm: Her Beautiful Brain reading, Book Culture, 450 Columbus Ave, New York 

Buy Her Beautiful Brain from your favorite bookstore. Order the Kindle version here.

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

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 Un-cool Writers’ Club

1003375_10204029713357348_4120200472773550975_n-1 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. IMG_0871It’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 that is not my point. My point is this: over my 58 years, I have learned, sometimes reluctantly but ultimately with relief, how wonderful, how freeing, it is to live life as not only an un-cool writer, but an un-cool person.

My education in un-coolness started early. There were painful drills, there were pop quizzes. But I faced my first big exam at the beginning of 9th grade at Seattle’s Eckstein Junior High School. All the aspiring cool girls, my sad self among them, hoped to be selected for something called “Girls Club,” which involved wearing special scarves and blouses once a week and engaging in lightweight service projects. Really, “Girls Club” was a sanctioned clique. My best friend—the one with whom I’d bought journals and real fountain pens and candles and browsed for old-fashioned children’s books at David Ishii’s bookstore in Pioneer Square—made the Girls Club cut. I did not. She dropped me with stunning speed.

When I came up for air after a good long cry, I realized what a great gift this was. I had been spared all the stress and effort it would have taken to retain my status as a Girls Club girl. I was free! Free to be my un-cool self. To keep on writing in my ink-stained journals; to keep on riding my bike to David Ishii’s or the Arboretum or anywhere else I could curl up with a book, undisturbed by cool people.

My junior high years coincided with my parents’ divorce, which, in that long-ago era, was definitely not a cool thing. But it was my Goddard College MFA advisor, Victoria Nelson, who helped me understand, decades later, how the divorce contributed to my liberation. Arlene and 6 kidsAll those hours I spent babysitting my younger brother and sisters while my mother went back to college gave me freedom to continue on my un-cool, future-writer path: unsupervised by adults, unseen by cool peers, I could write my fervent, un-cool poems and journal entries and read, read, read while my siblings watched cartoons or played. Sometimes we played school, with me as teacher. Or pioneers, or explorers. So not cool. I loved it.

And now that I’m a late-blooming, un-cool author, I’m more grateful than ever for the un-cool path that got me here. Not much I can do about my age. Nor my attraction to the wrong subjects. Nor my love of memoir writing, the actual hours spent writing, for which I credit my first Goddard advisor, Michael Klein, who taught me that memoir writing could be part poetry, part journalism, part essay: a hybrid, a blend, not unlike documentary filmmaking. Not unlike the way my restless brain has always worked.

The path of the un-cool writer is unpredictable. It’s more likely to result in rewards that can be measured in moments—conversations I’ve had after readings, emails from long-lost friends—than in big royalty checks or New York Times reviews. But it is the path I’m on, and I am grateful every day.

Upcoming readings: April 1, 7pm: St. James Cathedral Parish Hall, Seattle.  April 30, 7pm: The Regulator Bookshop, Durham, North Carolina.

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

 

 

                       

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