Her Beautiful Brain

by Ann Hedreen

  I don’t pretend to know where John is or whether his spirit has ever bumped into Mom’s or whether he might finally be getting down to resolving his unfinished business with God: finding out why he was called to restless prophecy; why his childhood anger never abated; why the love of his mother, sisters, brother, wife, and sons was never enough; why the time of his life ran out before he could resolve any of that here on planet Earth.

  He gave me my first tastes of cruelty and of charisma. He terrified me and he mesmerized me: his intellect was so dazzling; his personality was so damaged, so corroded by the burning anger he felt at such a young age and never knew how to safely cool.

  Our lives are far more peaceful without him.

  But there’s a hole: an odd quiet where there used to be a constant clatter—the kind of clatter, like the old newsroom teletype machine, that could sometimes drive you crazy, especially when you were trying to think.

  Then one day the noise is suddenly gone, and you realize, too late, that it was one of the sounds that made you feel truly alive.

  If, If, If

  “All would be well if, if, if,

  Say the green bells of Cardiff …”

  The question we try not to allow ourselves, we grievers, is the big What If. What if Buddy Holly hadn’t gotten on that plane? What if my daughter’s friend Phaedra had been in her mother’s car instead of her aunt’s that one summer night when Phaedra had just turned seven, that Texas night when a young drunk driver slammed into the back seat where Phaedra sat and the car burst into flames? What if my mother’s brain had not flipped some chemical switch two or three decades before her death; what if that fatal rerouting of proteins into plaques and tangles had never happened? And was it a switch that flipped in a moment, a fateful moment when stress hormones and genes and brain chemistry all crashed into each other just like Phaedra’s aunt and the man who’d had a few too many? Or was it a switch that had been rusting and fraying all her life until it finally just couldn’t hold on? What if she hadn’t played in the Butte dirt as a child and then put her chubby baby hands in her mouth, over and over again?

  If, if, if, say the green bells of Cardiff in the old Welsh poem by Idris Davies. Pete Seeger and Judy Collins and the Byrds all recorded versions of it; I can hear their sweet voices and I can hear the bells from all the towns they sang about but the only line I remember is If, if, if ringing out over the roofs of Cardiff, a city neither my mother nor I ever visited but one where she might have felt some kinship: the mountains, the mines, the terrible cruel beauty of a landscape that asks a high price to feed a family. Send me your young men and I will turn them old and bent. Give me your offerings of coal and minerals and I will fill the sky with smoke and kill every green thing on the ground and your babies’ blood will run with my chemicals. And if, if, if you can get away from here, I know where you’ll go: to some town in America like Butte, Montana, where the mountains are even higher and the mines are even deeper. And you’ll meet miners from all over the world, from Wales and Finland and Sicily and Kentucky, and together you’ll go down every day while your wives will raise your children in the dirt and soot spewed out by your smokestacks.

  So where do I even start saying if, if, if?

  What if Mom had not been born in Butte? What if there had been no Great Depression and Grandpa had made more money and it hadn’t taken him until Mom was thirteen to move his girls away from the dirty mines and down to the Flats?

  No. If I am going to indulge myself in this game of What If, I don’t want to go backwards. I want to imagine her as she would be now. Alive. Without Alzheimer’s disease.

  There’s a part of me that wishes I could get her blessing before I go into this imaginary world. There’s a part of me that knows what she might say: Oh, honey, don’t do it. You’ve got a beautiful life, you’ve got Rus and Claire and Nick, why do you want to torture yourself like this? Go out and do something fun with your family! But there’s another part of me that wants to do it, for her. To show her, wherever she now is, what might have been. I don’t know where she is. I feel her with me, now and then, though I don’t know what that even means or how to describe it. But I need her—that Mom that I feel with me, in me, near me—I need her to know that I’m writing this book because I want everyone who reads it to shoulder just for a moment the loss of her and then to feel the full weight of that loss times twenty-six million. Twenty-six million people around the world who are slipping away instead of living the lives they could have lived.

  What if, instead of caring for them, we could cure them? What if we could keep Alzheimer’s from happening in the first place?

  What if.

  What if she and I were walking in Seward Park right now, instead of me sitting here at my desk looking out at the park and thinking about her? What if her body was still strong, ready to walk, instead of gone? What if I could hear her voice, put my arm around her, bask in her present self instead of her spirit slipping away from me like one of those low clouds weaving through the trees on a wet day that you can see and even walk right through but never ever touch? What if she and I were walking on the path that goes right through the heart of the woods, the oldest trees in Seattle, and we were just breathing in all that fresh tree-air and talking about nothing and everything? Which of the fourteen grandchildren look the most like her. What a beautiful place we live in. What she’s going to paint next or where she’s going to travel next or which grandchild will be the next to spend the night at her house. What if Mom was seventy-nine years old and alive and that’s what we were doing today, right now, and I was writing a book about anything, anything at all besides my mother dying of Alzheimer’s disease?

  If Mom had not had Alzheimer’s disease, her teaching career would have gathered strength and momentum instead of wobbling and sputtering just when she’d finally landed the job she’d always wanted. She might have kept on teaching for ten more years. One hundred fifty students each semester, times twenty. Three thousand students that never got a chance to learn from her.

  If Mom had not had Alzheimer’s disease, she might have stayed in her airy house in Madrona. I think she’d like the ways the neighborhood has changed. There are more cafés now. She and I could have met at Verité and shared one of its famous cupcakes. I could have introduced her to some of the middle-schoolers at Madrona K–8 School, where I’ve been volunteering as a writing coach. The old building has been renovated and the principal has won awards for raising test scores, though most of the white kids in the neighborhood still go to private or Catholic schools. Maybe she could have become a Madrona School booster. Worked the Tennis Club crowd. Worn a Madrona K–8 Panther Pride T-shirt on her walks down to the lake through the neighborhood’s tonier side. Madrona’s school color is sky blue: perfect for Mom with her blue eyes and silver hair.

  I wish I could bring her in tomorrow for show and tell. Have her recite that poem she used to love so much by the young Englishman who was about to be executed for treason: “My glass is full, and now my glass is run;/And now I live, and now my life is done.” How it used to make me cry, the thought of dying young!

  Because of course that’s what tragedy is: dying young. You get that look from people, when you use the word “tragedy” to describe Alzheimer’s disease: that look that says, Don’t say it’s tragic. Childhood cancer, that’s tragic. Phaedra killed by a drunk driver at seven: tragic. Buddy Holly dead at twenty-two. Chidiock Tichborne, one-hit-wonder poet of the sixteenth century, dead at twenty-eight. Young soldiers killed in senseless wars. Babies dying of malnutrition. Those are tragedies. Not Alzheimer’s disease.

  But how do we measure tragedy? How do we compare heartbreaks? When a life is slowly, torturously erased instead of suddenly cut short, shouldn’t we grieve that loss too? And when this gradual erasure is happening to millions of people, should we not call it what it is: an epidemic?

  Every day, I get an email digest called the Alzheimer’s Daily News. My sisters think I’m a glutton for punishment. But
I want to be among the first to know when the really big breakthrough occurs. I want to be first in line for the vaccine trials. I want to read the stories of the first people cured. I want to hear the news when scientists finally figure out which cocktails of genes, environment, stress, and bad luck are most likely to cause Alzheimer’s disease and which cocktails of vitamins, nutrition, drugs, mental and physical exercise might prevent it or slow it down. I want to celebrate when brave people with Alzheimer’s testify before Congress about the costs of the illness—in lost human potential; lost wages; lost caregivers’ wages; in endstage, round-the-clock nursing; in the emotional and social toll on families. I want to mourn when lives, famous and not, succumb to this slowest and most callous of killers.

  “Memories Exist Even When Forgotten, Study Suggests,” was the headline on an Alzheimer’s Daily News story I saw today. Scientists using functional magnetic resonance imaging tracked patterns in the brains of subjects that showed that even when the person could not remember the details of a task performed earlier, “the brain knew something about what had occurred, even though the subject was not aware of the information,” according to lead researcher Jeff Johnson of the University of California at Irvine.

  For a fleeting, absurd moment when I saw that headline, I thought of all of Mom’s memories, so many of them gone forever before she could share them and I wondered, Are they somewhere? Could they someday be unlocked? But this was a science story, not science fiction, and of course Mr. Johnson was talking about the memories of living people. Young people, in fact: his subjects were college students.

  So here comes the big What If again, this time past tense. What If scientists had found a way for Mom to reclaim all those memories she was shedding like snakeskins every day for the last decade or more of her life?

  I picture them like boxes of old photographs and letters no one can get to because they’re behind or underneath other, heavier boxes, or because they’re buried in silt and sludge, like a box that had the bad luck to be stored away in a New Orleans garage when the levees broke.

  That’s what Alzheimer’s disease is like: it’s like the levee breaking in your brain, the levee that keeps out the sludgy plaques and seaweedy tangles. Only it happens slowly, instead of all at once like Hurricane Katrina. It happens as slowly as molasses dripping from a cracked jar way in the back of the cupboard. And no one notices until every other jar on the shelf is stuck in it, unable to move, unable to do what it is there to do: to be lifted out easily, to pour out a few drops of oil or a shake of cinnamon or a teaspoon of baking powder and then to be put away again, at the ready, until the next time it is needed to make something tasty and beautiful.

  To be put away where it exists, even if forgotten.

  I have a few framed photos of Mom in my office. Some came from my Grandma’s boxes, including one of Mom and Aunt Jo Ann when they were about four and two. In the photo they are smiling so sweetly, as if they’ve just heard a silly joke or been promised a gingersnap and that’s all it took to capture this radiant little instant in their tiny lives. But if you look closely, you can see the hours of preparation that went into this moment. Their hair is clean and shiny and bobbed just so: the bangs straight across the middle of their foreheads, the ends in perfect half-moons just above their earlobes. Their dresses are lovingly detailed with velvet ribbons and Peter Pan collars and puffed sleeves. Their long stockings are free of rips and holes. Only their scuffed white shoes hint at the sooty Butte world outside. Grandma could cut and shampoo their hair, scrub their faces, sew those beautiful dresses—but she must have run out of steam or spare change for polish when it came to the shoes.

  What if I could ask Mom what she remembers about this picture, instead of idly speculating? I know they were very poor then; it would have been the mid-thirties, when they lived in that succession of ever-smaller Finntown flats. It must have been a lot of work to heat water for bathing and shampooing. And the dresses would have had their own whole histories: this one cut from Auntie Helen’s castoff, that one from a bolt end spotted in the corner of the Singer store. Aunt Jo Ann’s smile is a little tentative; Mom’s is trusting, confident. Maybe Mom just told Jo Ann not to worry: Sit still, little sister, fold your hands like mine, smile like I’m smiling, and soon we’ll be sent off to play.

  Mom would probably tell me that although she knows now how poor they were, she didn’t know it then. That her parents and her widowed Finnish grandmothers and her childless Auntie Helen all doted on their two little princesses, all encouraged their game of pretending to be Elizabeth and Margaret Rose of England. I know this from conversations we had decades ago. But what I don’t know is what she might say about this picture now. She had hoped someday to write about her childhood, to reflect in a way that she never had time for when she was raising six kids and launching a teaching career in the middle of her life.

  When we were growing up, she didn’t talk a lot about her roots. But as the six of us moved out and her life slowed down to a reasonable speed, she began to take an interest. She regretted that she hadn’t learned more from her own parents. Grandpa was the last of his family.

  It’s breathtaking to think of what we miss by just being in the wrong phase of life at the wrong time. When Grandma and Grandpa were ready to tell their stories, Mom was busy doing everything she could to blend into the Tennis Club crowd. It was the age of assimilation; being ethnic was as uncool then as it is cool now. Mom had a lot going for her in her quest to swim with the Seattle bluebloods: flawless diction, a beautiful smile, a great figure, skin that tanned so deeply and evenly that she joked about being “mistaken for an Indian” and, when pressed, would sometimes say something vague about Finns being “darker” than other Scandinavians—which is not really true, although the Sami people, formerly known as Laplanders, are darker and Mom’s coloring probably came from some Sami branch of her genealogy.

  But the higher she climbed up the social ladder, the harder it was to climb back down and pull up a chair and sit still while her parents talked. Or Grandpa’s sister, dear old Auntie Helen, whose Parkinson’s was getting worse and worse. Or Grandma Cere’s sisters: Eine, Anna, Laina, and Martha, with their funny Finnish way of saying AR-lene instead of Ar-LENE and their loyalty to the weekly ritual of getting their hair set in unmovable waves and their sudden, late-sixties defection from slippery print dresses to polyester pantsuits in alarming pastels. It was hard to sit still, no matter how much she loved them, especially when her husband and six children were pulling her toward the door, away from the world of the Grundstroms and Warilas and Peltolas and Turppas. And it was probably even harder when her marriage began to splinter and she was scrambling to get a college degree and then a job with six children still clamoring for her attention.

  And then, thirty years later, I did the same thing to her.

  I was so busy. I had children and a marriage and a career and even before we knew it was Alzheimer’s, I knew that something was wrong with Mom’s brain, I knew her memories were shredding away, going, going, gone, more every day—but maybe some irrational part of me believed that somewhere they still existed, even if forgotten by Mom. That when I was ready, I would find them, intact, like boxes in a nice dry basement, as opposed to a post-Katrina New Orleans basement.

  It was so hard to sit still for her. I was moving too fast.

  Now I’m left with photos that have no stories.

  Like my other desktop favorite: a snapshot of Mom teetering between childhood and adolescence, holding a trout in one hand and a fishing pole in the other, her smile a wide, proud beam, her straight hair permed in the tortured style of the early forties, a Girl Scout pin in the middle of her still-flat, T-shirted chest. Was it a Girl Scout outing? Or was she fishing with Grandpa, and just happened to be wearing the pin?

  The point is, there’s a story and I don’t know it. Much as I am grateful for the photo and all that it says, I threw away—like it was nothing at all—the window of time when she could have told the story
.

  I was so busy.

  Twenty years earlier, when I took refuge from the anxieties of high school in our school’s ambitious theatre program, my big acting break was landing the role of a mom whose life had not only slowed down, it had ground to a near-halt: Beatrice, the bitter, mentally unstable, divorced mother in Paul Zindel’s The Effect of Gamma Rays on Man-in-the-Moon Marigolds, who spends most of her stage time in a ragged bathrobe and slippers, smoking and ranting about her “half-life,” a phrase she picked up from her daughter’s award-winning science experiment in which marigolds were exposed to radiation.

  “Half-life. If you want to know what a half-life is, just look at me. You’re looking at the original half-life!” I growled as Beatrice, dragging on a Salem. The student teacher had taken me out back behind the art building and taught me how to smoke for the role—it was the seventies—and I was loving it.

  Mom had donated her old aqua-blue nylon bathrobe and worn-out slippers for my costume. My long hair was pinned up and purposely straggling from a couple of dozen bobby pins. I penciled crow’s feet around my eyes and lines around my mouth.

  I wonder now what Mom thought, looking at me up there in her cast-off robe, railing about my wasted half-life, smoking away. Was I acting out her worst nightmare, the version of her story in which she is left alone and falls apart instead of creating a new life?

  I think Beatrice was my nightmare, when my kids were young: the nightmare of failure and isolation, the vision that drove me to never slow down.

  I look at these pictures of Mom as a girl and I know now: the cost of never slowing down is high. The stories I didn’t hear are as gone forever as if they had never existed, as if they were the students Mom didn’t teach, the trips she didn’t take, the paintings she didn’t paint.