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Archive for the category “health & medicine”

American Infection

imgresSometimes 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.

And so: if Trump is the infection, what is the cure?

The first and worst news, of course: it’s going to take a lot longer than ten days.

But we have to get the treatment started. And—despite the screaming-red, oozing tax bill that, at this writing, is poised to pass—I would argue that we have started.

WE are the antibiotics. Every time we make a phone call to Capitol Hill, every time we contribute to the ACLU, Emily’s List, Planned Parenthood or the Sierra Club (my own favorites), we are giving our ailing patient, our democracy, another life-saving dose. And every time a new, energetic progressive candidate is elected to a local or state office, that’s a mega-dose. Tukwila, a Seattle suburb, just elected Somali-American Zak Idan, 29, to its City Council. Seattle’s east-side suburbs just tipped our statehouse fully blue by electing Indian-American lawyer Manka Dhingra to the state senate. There have been similar victories in other states this fall, notably in Virginia and New Jersey. All of this bodes well for elections in 2018.

But this infection is ugly. As Charles Blow writes this week, it stinks of sanctioned racism and that smell just keeps getting stronger. In just the past few days alone, Trump has tweeted anti-Muslim hate videos, insulted Native Americans, and tried to revive his Obama-smearing Birther campaign. And as Thomas Edsall writes, the infection has spread its noxious tentacles deep and wide. But we, the antibiotics, must keep on until we turn the tide. Make those calls, write those emails, support progressive candidates at every level. Or be like Idan and Dhingra and run for office yourself.

And know that while we’re working to turn the infectious tide in 2018, there are specialists who are deploying other life-saving measures. Robert Mueller and his staff. Several state attorneys general. Senators like our own Patty Murray and Maria Cantwell, both of whom are very busy right now identifying all the nasty bacteria that has been stuffed into the tax bill, like Arctic drilling and repeal of the health care mandate.

unnamedThis won’t be easy. The antibiotics will take time. There will be a lot of wound care, too. Scar tissue. Rehab. But we’ve got to save our patient. How will we answer to our children if we let democracy die?

 

 

 

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No Mud, No Lotus

IMG_0860“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.

51DkLeJ5ZyL._SY346_           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 family hiked; as I pondered why foot surgery had somehow triggered pain in parts of my body—back, hip, glute—that were not near my foot, I inched a little closer to actually picking up the slim black book with its taunting title. I was fed up with obsessing about the physical mysteries of recovery. I hadn’t really turned my own challenges into an AFOG at all. I was trying to, but I kept getting mired in the fog of self-pity, which is an ugly stew, not unlike the thick gruel of forest fire smoke.

“The art of happiness is also the art of suffering well,” Nhat Hanh writes. Hmmm. Really? “Thinking we should be able to have a life without any suffering is as deluded as thinking we should be able to have a left side without a right side.” He goes on in a similar vein: without darkness there is no light; without cold there is no warmth.

But the story that got my attention was his description of his own suffering from a virus in his lungs that made them bleed. Nhat Hanh is well-known for his love of joyful, mindful breathing; for adages like: “When you wake up in the morning, the first thing to do is to breathe and to become aware that you have 24 brand-new hours to live.” When he was stricken by this severe lung virus, he wrote that “it was difficult to breathe, and it was difficult to be happy while breathing.” But after he healed? “Now when I breathe, all I need to do is to remember the time when my lungs were infected with this virus. Then every breath I take becomes really delicious, really good.”

It wasn’t being well that made Nhat Hanh even more joyful about breathing; it was the fact that he’d been so sick. This is not such a difficult concept. But Nhat Hanh knows how easy it is for us to forget these simple truths, and that’s why he keeps writing about them. I’m sure he would not be surprised or insulted if I told him that his book sat in a stack for weeks before it was finally, grudgingly, opened.

No one, including Thich Nhat Hanh, would argue that suffering is inherently good. Earthquakes, hurricanes, floods and fires: not good. Twanging something somewhere in my lower back just as I was getting mobile again: ditto.

But like Nhat Hanh breathing with joy after his illness, I know this: the rain that finally washed away the smoky haze over Washington state was the most beautiful, sweet-smelling rain ever. Letting go of hiking for a while and, instead, riding my bicycle around Seward Park for the first time in months was the best bike ride ever.

On the radio this morning, a resident of Central Mexico talked about how catastrophe brings us together. Politics and grudges become irrelevant. People are at their best.

IMG_0864In the words of the wise Buddhist monk: “We have to learn how to embrace and cradle our own suffering and the suffering of the world, with a lot of tenderness.”

Seattle readers: There are still a few spots left in my Introduction to Memoir Writing Class, which starts next Wednesday at Seattle Central College. I’m also excited to be a presenter at the Write on The Sound conference in Edmonds on Oct 7. That event is sold out, but I’ll keep you posted re future similar opportunities. 

 

 

 

 

Boot Camp

IMG_0717You 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 this advice: Be direct and to the point. Don’t couch everything in silly phrases like, “If you don’t mind,” or “If it’s not too much trouble” or “When you get a chance.” Also: “please” and “thank you” are always worth saying.

41ciJJ+6+mL._SX315_BO1,204,203,200_I’m reading like crazy. When you subtract real exercise, cooking, cleaning, shopping and driving from your day, you suddenly have a lot of reading time. You can read all of the Sunday papers, and even some of The New Yorker, and still have time for stacks of books. Here are a few of my May favorites: Elizabeth Strout’s new book of ingenuously linked stories, Abide with Me; Walker Percy’s stunning 1961 classic, The Moviegoer; Mirabai Starr’s memoir of grief and spiritual searching, Caravan of No Despair; Richard Ford’s memoir of his parents, Between Them; 51Oh93fUHEL._SY346_Finnish-American journalist Anu Partenen’s provocative look at life in Scandinavia versus America, The Nordic Theory of Everything; and Claire Dederer’s memoir of adolescent yearning, sex and marriage, Love and Trouble.

51tLaNEEZdLAbout Love and Trouble: Two different friends urged me to get to Dederer’s book as soon as I possibly could. I urge you to get to it too. It’s not an easy read. I also know people who say they won’t touch it. I wish they would, because it is an honest and unflinching reckoning with what it meant to grow up at a time when parents were often too busy with their own missions of self-discovery to pay attention to what their kids were up to. And Dederer’s writing is hypnotically engaging, especially in the chapter entitled “Dear Roman Polanski.” I won’t say more, except this: I forgot I even had a swollen, stitched-up, splint-encased foot while reading this book.

IMG_0720I’ve also had plenty of time to follow the super-hot new Sopranos-like soap opera, Our 45th President. I recommend Lester Holt, Brian Williams and Judy Woodruff when you need a break from having the news shouted at you. And if you haven’t subscribed to The Washington Post, do it now. (I’m not up on NPR’s coverage, since I’m not doing any cooking or driving.)

IMG_2697And, finally, I am deep into the Journals Project: which consists of re-reading and transcribing excerpts from my, um, nearly five decades of journals. This is a project that has been ongoing, off and on, for well over a year, but one which I now feel I may actually complete within the next month. Nothing like solitude and big chunks of time, time, time, for deep spelunking into my own past.

My motivation for doing this is to trace my spiritual life (or lack thereof) from age 13, when I began keeping an intermittent journal. It was a time in my life when I was fervent in my faith. I want to write about this. But first I have to remember it, and ponder it, and take it forward through the many decades between then and now. And having time to do that has been the second-greatest gift of this period of convalescence.

But there’s no question about what the first-greatest gift of this Blue-Splint Boot Camp has been: learning how to ask for, and accept, help. Many people have quipped that this is good preparation for old age. Yes it certainly is, and since my husband and I intend to tackle that project (old age) together too, aren’t we lucky to have this opportunity to rehearse? I only hope that when it’s my turn to be the butler/chauffeur/chef/caregiver, I can be even half as positive, uncomplaining and cheerful as he is.

HBBfinalcoverSeattle-area friends: I’ll be reading from Her Beautiful Brain on  June 17 at 1pm at the Kenmore Library. 

 

 

 

 

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.

 

 

 

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.”

 

From Sun to Sun

51NYhLAG7FL._SX326_BO1,204,203,200_ “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 to accept the help of Rachel, a gifted full-time caregiver, both of them began to heal. Emotionally.

One night, Rachel and McKissock carried Eric outside to see the full moon. “There are moments in my life where I feel so humble that I simply want to kneel in reverence; this was one such moment,” McKissock writes. “It was sacred to witness this beautiful, broken man wrapped in blankets—who knew full well he was seeing his last full moon.”

MicKissock speaks truth when she says hospice nurses and caregivers are not angels. They are the opposite of ethereal. Much of their work is hard, physical labor: moving patients, dressing patients, changing sheets, preparing, serving and cleaning up after painstakingly offered meals. Much of it is a highly professional mix of cognition and intuition, calibrated by years of experience, as they assess a patient’s ever-changing needs for care and medication, even as they carefully juggle his or his family’s needs to be kept informed and prepared for what lies ahead. They know that as they do their job, the dying person is doing the hardest spiritual work any of us will ever do: saying good-bye. And then preparing to take that final step, the one we will all have to take alone. A good hospice nurse can be a very real guide and helper as her patient embarks on that journey.

My brother died of a brain tumor at 52. Because his brain was affected by the tumor, it was very hard for him to express his thoughts and feelings in his final days. But I’ll never forget two words he said to me, as we sat together in his hospice room: “I’m scared.” I felt helpless in that moment. I don’t remember what I said in response. But I was so grateful for the hospice nurses, who had created an atmosphere of comfort and serenity for him and for us.

At the end of the chapter about Eric, McKissock quotes the 13th century poet, Rumi: “This being human is a Guest House; treat each guest honorably.” With the help of hospice nurses, caregivers and social workers, I believe we are, at last, re-learning how to do that.

Bonus event! At 5pm on Sunday, Nov 1, I will be at Northwest Film Forum to talk about the Kickstarter campaign for our film, Zona Intangible, as part of their free Join the Crowd presentation about crowd funding. Please support our Kickstarter if you can and share the link with others!

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

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.

Why I Volunteer for Research, Part Two

QUIBRO_hires2Although 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 far), but mostly it’s memory and neural testing. Once, a different UW department asked me to take part in an Alzheimer’s study that required an MRI: a Star Trek-like experience in which I lay down on a sort of conveyor belt that slid me into a tube that took pictures of my brain.

Some people are surprised that I want to participate in research. They ask if I get nervous about the memory testing, and even though I don’t suffer from a general fear of test-taking, the answer is: given what’s at stake, of course I do. I breathe a lot as I walk into the VA on the appointed day; I pep-talk myself about how the best strategy is to stay calm. Once the testing starts, I try to relax into it and just stay focused.

But what if one year I don’t pass with flying colors? Sure, that’s a scary thought. But if it happens, wouldn’t I want to be in immediate contact with the top Alzheimer’s researchers in my city? Wouldn’t I want to participate in, for example, a drug trial for people in the early stage? Yes and yes. And meanwhile, given my high level of fear about Alzheimer’s, it is extremely comforting to know that I’m still a high-functioning control subject.

It is also important to feel like I’m doing something for the cause of ending Alzheimer’s. I don’t have large amounts of money to donate. But I do have small chunks of time that I can gladly give. And as long as I don’t have to change a tire or carry bear spray, I’m in.

Speaking of, wouldn’t it be great if employers gave people time off to volunteer for research? As a self-employed filmmaker and writer, this is not an issue for me, but for many people it is. And if we could step up the pace of research, would that not be a wonderful thing?

Note: I wrote this post for the Alzheimer’s Association’s brand-new regional blog: check it out here.

Registration is open for Introduction to Memoir Writing at Seattle Central College. Starts February 11, 2015. Six Wednesday 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.

 

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