Her Beautiful Brain

by Ann Hedreen

  What I said at her memorial service was that Johnny Carson’s smile was almost, almost as pretty as hers.

  Mom died on March 7, 2006. She was not quite seventy-five. I still think about her every day. I wish she was here, I wish Alzheimer’s had never happened. Of course. But I also feel so genuinely lucky that she was my mom. That I have memories like the night in Monte Carlo and the ski trips and her singing “I Feel Pretty” in the basement while she sorted laundry.

  She was, as filmmakers like to say, an amazing source of natural light.

  As for the darker parts of her life, especially her final years, writing helps, though sometimes I wish I were a scientist.

  Participating in research helps, because then at least I’m helping the scientists.

  But feeling helpful doesn’t mean I don’t still feel helpless.

  Three years ago, I took part in a study that included a brain 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, mysteriously produced from a potion of magnetic fields and radio frequencies, of my brain. Rus filmed it, thinking that we might do something with it someday. All we’ve done so far is write “brain” on a videotape dated 1/9/2007.

  I popped it in the player on my desk, just once, and looked at it.

  The MRI image on the technician’s computer screen was—disappointing. Underwhelming. It looked like any old black and white picture of a brain from a junior high science textbook. There were all the interesting pillowy shapes, some big, some small, some folded in accordion pleats, all arranged to fit perfectly inside a profile drawing of a human head. Then this first view morphed on the screen into many different views: making it more of a slide show than a textbook, but still redolent of darkened classrooms on sleepy afternoons.

  “It’s not just any brain, it’s my brain,” I tried to tell myself. “That’s me in those pillows. Who I am. Right there.” But it was too abstract.

  Then I heard some audio on the tape. I turned it up. It was the MRI technician, talking to Rus.

  “She has a beautiful brain,” he said. “But you knew that.”

  I played it again, just to be sure.

  A beautiful brain. As of 1/9/2007, I had a beautiful brain. It’s nice to know. I think.

  When Rus and I were filming interviews for Quick Brown Fox with Mom’s Butte High classmates at their fifty-fifth reunion, the first thing one of them said about Mom was, “She had the most wonderful, wonderful brain.” Not, “She was so smart,” or “She was sure brainy,” but, “She had the most wonderful brain.” And I knew just what she meant: a brain that won trig and geometry prizes and painted vividly and loved literature; that later in life bounced back from tragedy, bought her first Eurail pass at forty-nine, put on a red sundress and set out for Monte Carlo—this was once a wonderful, wonderful brain. A beautiful brain.

  According to the written report, the autopsy of Mom’s brain showed “severe atrophy” in the temporal lobe and hippocampus, both essential to learning and memory. “Neuritic plaques,” and “neurofibrillary tangles” were everywhere. Lewy bodies, another kind of brain plaque that may be related to Parkinson’s disease, were “abundant” in the amygdala, where strong emotions are processed and remembered. The average healthy brain weighs three pounds; at death, hers weighed about 2.3 pounds. The report concludes: “The following processes contributed to the patient’s dementia: Alzheimer’s disease and Lewy body disease, amygdala predominant.”

  She was tested for the genetic marker that is associated with Alzheimer’s disease, but in keeping with current research protocol, this result was not disclosed to us. If we decide we want to know, we would need to have the test done by a private laboratory.

  People sometimes ask me if I do want to know whether Mom had the marker or whether I have it. The short answer is no, not unless there is something positive I can do with the information. It is hardly definitive: about one out of every three or four of us have this marker, known as the APOE4 allele, and about forty percent of people with Alzheimer’s disease have it. In our mother’s big family tree, there is not an overwhelmingly strong history of Alzheimer’s disease: just Mom and one great-aunt. But if my children wanted to know, for example, or if I or they or Rus thought I was showing early signs of dementia, then maybe I would get tested. There are drugs you can take that are most effective in the early stages of Alzheimer’s, drugs that can’t stop the illness but may slow it.

  Mom took one of those drugs for a while. We’ll never know whether it made a difference, because we don’t know how the disease would have progressed if she hadn’t taken it. But during her steep, grim, late-stage descent, we looked back on some moments from those earlier Alzheimer’s years as almost oasis-like.

  I remember walking with her one sunny day along the south end of Lake Washington. We weren’t talking much, which made me feel sad and guilty. I was in a dark, Alzheimer’s-hating mood and I could not summon up the energy to talk; I couldn’t bear the thought of having to explain some inane thing over and over again.

  Suddenly Mom leaned over.

  “Look at this rock!” she exclaimed.

  “Where?” I didn’t see it.

  “Right here.” She picked up a small, gray, absolutely ordinary beach rock, cradling it as if it were a robin’s egg. She held it out to me, smiling. “Look at how round it is!”

  “You’re right, Mom.” How could I disagree? “It is so perfectly round.”

  She put the rock in her pocket. We walked on.

  A few feet later she stopped and looked all around at the lake and the spring-green trees and the mountains and she sighed, contentedly.

  “We live in such a beautiful place,” she said. One of her stock lines, though she said it, as she always did, as if she’d never said it before and it was a completely new thought. But again, how could I disagree?

  Then another stock statement, delivered with the same enthusiasm: “You know, all the trees were so small when I first moved here. Now look at them!”

  This one always perplexed me a little. Hadn’t there always been plenty of tall trees in Seattle?

  Then one Sunday I saw a “Then and Now” photo spread in the Seattle Times. The point of it was how much our urban tree canopy has matured in the fifty or so years since the last big construction boom inside the city limits, and how the new trend of tearing down old ranch houses and modest bungalows and replacing them with either oversized minimansions or cheek-by-jowl townhomes was threatening the city’s trees, many of which were planted after World War II. Which was right before Mom moved to Seattle. So she really did remember a time when all the streets were lined with saplings. And somehow, as Alzheimer’s blocked off a few lanes here and cul-de-sacs there in her brain, she found herself continually revisiting that memory and appreciating how tall the tiny trees of her youth had become.

  This often led her back to her “Nothing grew in Butte, Montana” riff. And so, moving along with her, I would find myself making the same circle: We live in such a beautiful place. Look how the trees have grown in fifty years. Nothing grew in Butte, Montana.

  Can growing up in a place where nothing grew have been good for the body chemistry that fueled her brain? I wish I could send a team of scientists to Butte to find out.

  And yet, there are so many toxic places in the world. And Mom has plenty of old friends from Butte who are doing just fine.

  I ran into a few of them recently, at the University of Washington Alzheimer’s Disease Research Center’s luncheon honoring research volunteers. As far as I could tell, Jack and Frankie were still firmly in the control subject category. They began talking to another couple at our table who happened to have grown up in Great Falls. Before we knew it, the four of them were belting out the Montana state song: “Tell me of that Treasure State, story always new, Tell of its beauties grand, and its hearts so true … ”

  The couple they were singing with were retired Methodist ministers: the wife wading slowly int
o the middle waters of Alzheimer’s where, though she could barely speak, the Montana state song came flowing back in a heartbeat.

  Awards were given for the oldest research volunteer, who was 103; the volunteer who had done the most spinal taps—seven; the two volunteers who had been participating the longest—twenty-two years.

  You realize, on a day like that, how very much company you have in the world. How very many families have been through this. Are going through this.

  You realize the ripple effect.

  Our neighbors had to take down an old tree recently, a Douglas fir between our driveway and their yard that had never looked well in all of the twenty years we’ve lived here, though it must have had a healthy youth to have grown so tall. Some long-ago sickness had burrowed deep into its heartwood, hammering away for years at its natural vigor, the way Alzheimer’s took hold in Mom long before we knew it was there.

  But the fir’s gaunt branches always had an austere dignity, like a thin old man who was clearly once as dashing as Johnny Carson. And the birds loved its spacious perches.

  The tree man climbed it, chainsaw in hand, and took down a few feet at a time. It took him all day. Our neighbor piled the branches in his yard. Up close, the branches looked healthy, brushy with green needles, not spindly and lonely, the way they had looked up on the tree, spaced so far apart.

  The sight of such a tall tree coming down made passersby stop.

  “It’s been sick for a long time,” people said.

  “One big windstorm and it could’ve taken down that power line.”

  “I know the birds will miss it.”

  Now, from my office window, the street looks bare. A utility pole formerly sheltered by the tree is exposed and ugly. And the birds are circling, puzzling over whether to check out the chimneys or just head over to the park.

  My brother and sisters and I are like that. We’re never quite sure where to gather on birthdays and holidays. Our houses feel like saplings that aren’t grown up yet. Too few branches. Not enough shade.

  I think we just need the occasional good soaking rain. And time, lots of time. And plenty of light.

  The End

  Acknowledgments

  My mother, Arlene, was with me every minute I spent writing this book. Though I will always wish her story had ended differently, I am honored to have written this version of it and I am so fortunate that she was my mom. I might not be a writer at all if not for the inspiration of Arlene’s indomitable sisu—a Finnish word that in my mind means grit and pluck with a little humor thrown in.

  My husband, Rustin, was my first and best reader. He loved me, encouraged me, fed me, took on way more than his share of everything and somehow kept the whole family’s joie de vivre humming through not only the writing of this book but also the toughest years of Arlene’s illness.

  Our children, Claire and Nick, never wavered in their loving compassion for their grandmother and in their understanding of why I needed to write Her Beautiful Brain.

  I am also forever grateful to my extended family, especially my sister Kristie, who read an early draft with a fine-toothed comb for historical accuracy, and my dad, Mike Hedreen, who let me interview him for two hours.

  Thanks also to Nancy Nordhoff for founding Hedgebrook, an indescribably nurturing haven for women writers; to Goddard MFA advisors Michael Klein and Victoria Nelson for their inspiration, insight, and direction; to Goddard mates Isla McKetta, Priya Keefe, Karen Hugg, Ann Keeling, Natasha Oliver, Elizabeth Howard, and Ellen Welcker; to Hedgebrook role models Bishakha Datta, Irina Reyn, Yvette Heyliger, Ruth Ozeki, Claire Dederer, Barbara Howett, Loreen Lee, Donna Miscolta, Allison Green, and Elizabeth Austen with an “e”; and to early readers, patient listeners, friends, and moral supporters Nancy Rinne, Anne Daley, Dana Robbins, Lisa Phillips, Lindsay Michel, Vicky Jamieson-Drake, Pat Duggan, Joe Unger, Ellen Cole, Dodi Fredericks, Kristine Forbes, Susan Rosenbaum, Susan Rava, David James Smith, Caroline Becker, Ellen Blaney, Elizabeth Austin with an “i,” Holly Hughes, Mary Jane Knecht, Ron Reagan, Bonnie Vaughan, Carmen Ficarra, Lisa Moore, and Faith Conlon.

  Thanks to the doctors and staff of the University of Washington Alzheimer’s Disease Research Center, especially Drs. Murray Raskind, Elaine Peskind, James Leverenz, and Thomas Bird. Thanks to Kirsten Rohde, R.N., who first encouraged me to volunteer for research.

  Thanks to the indomitable Keri Pollock and her colleagues at the Western and Central Washington chapter of the Alzheimer’s Association.

  Thanks to Women Make Movies, Northwest Film Forum, KCTS, Women in Film/Seattle, Greg Olson at the Seattle Art Museum, and the many individual donors who supported our 2004 film, Quick Brown Fox: An Alzheimer’s Story.

  Finally, thank you to Brooke Warner, Kamy Wicoff, and Caitlyn Levin of She Writes Press. I am so honored to be part of this new and exciting venture.

  About the Author

  Ann Hedreen is a writer, filmmaker, teacher and voice of the radio podcast and blog, The Restless Nest. She and her husband Rustin Thompson own White Noise Productions. Together, they have made more than 100 films, many of which have been seen on PBS and other TV stations all over the world and some of which have won Emmys and other awards. They have two grown-up children and live in south Seattle.

  Ann has an MFA from Goddard College and is an alumna of the Hedgebrook center for women writers. Her work has been published in Seattle Metropolitan Magazine (“Alzheimer’s: Laughter and Forgetting,” Society of Professional Journalists’ First Place/Pacific Northwest winner for Science & Health reporting, 2012) Courageous Creativity, Verbalist’s Journal, the Pitkin Review, the Seattle Times, the Seattle Post-Intelligencer, Grist, the Sunday Observer of Bombay, the Galen Stone Review and broadcast on NPR affiliate KUOW. She earned her B.A. at Wellesley College and began her career at the City News Bureau of Chicago.

  Ann speaks and writes frequently about Alzheimer’s disease and has volunteered as a control subject for many Alzheimer’s studies. So far, she’s undergone five spinal taps for the cause.

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  She Writes Press is an independent publishing company

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  Visit us at www.shewritespress.com.

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