Her Beautiful Brain Read online

  Before we know it, the nest will be empty. Our dream is to sell or rent it out for a year while we reprise our round-the-world trip in time for our twenty-fifth anniversary. I know that some of the places we loved will have changed a lot, but so have we. And so has our understanding of love in general and our love in particular. We now understand that traveling to faraway places is easy. That it cannot compare to the hard work you do not every twenty-five years but every season of your life: like pulling up dandelions and crabgrass in the spring so the butter lettuce and chard will have room to grow. We’ve learned that smugness is a weed, not a flower. That love thrives in a good loamy mix of gratitude, humility, humor, and constant sharing: of joys, griefs, frustrations, chores, hikes, bottles of wine, the first tender lettuce leaves, the first ripe tomatoes.

  Mom tried to describe love once, in a poem we found in the file folder that also contained her will and that un-crumpled list of goals.

  The poem is called, “To My Children” and it begins:

  I love you all

  Equally is not the right word.

  How can love be measured out?

  Love is infinite, indefinite, pervasive.

  Reaching out, enveloping.

  Love can warm and it can smother.

  It should set free not shackle.

  Understand not criticize.

  She must have sometimes felt smothered and shackled by the marital expectations of the 1950s and sixties. And I know her stifled braininess made her competitive with and critical of her husbands. But by loving each of her children so far beyond merely “equally,” she did a fine job of setting us free to love other people, of demonstrating that we are all capable of “infinite, indefinite, pervasive” amounts of love.

  But love is like God: it’s the hardest thing in the world to try to contain in words. It can’t be contained, not really, not fully. Which must be why we writers keep trying. It’s the Irish in us, whether we’re James Joyce or just another wholesome Finn. We’re passionate about our work, which so often is all about getting all of our memories, all of our love, our people, our mothers and babies, to sit down at the same table, and maybe just enjoy a few iced mochas and mazurka bars. Together.

  Gero Psych

  Dan, the nurse’s aide with the braid down his back, is from Great Falls. Dr. Sorensen’s family is from Anaconda. Everyone at the Seattle Geropsychiatric Center seems to have a Montana connection, whether or not that means anything to Mom. Could she feel something comforting, something Montanan, in Dan’s ropy forearms as he ties her restraints? Does she see the smokestacks of Anaconda in Dr. Sorensen’s eyes, as he holds his tiny flashlight up to hers, chattering about how his grandpa was a copper miner, just like her dad? Is there anything left of Montana, somewhere deep inside her, underneath the spring avalanche of tangles, the winter whiteout of plaques?

  I hope so. I hope there are bits of Montana stuck in odd places in her brain, places where she can hide out so that she doesn’t have to always be where her body is: in this dayroom jammed with wheelchairs full of sagging, ragdoll people like her. People who started out in places like Butte, Montana and lived lives and had jobs and raised children, never knowing that their destination was this River Styx of a wing of a sprawling hospital in sprawling North Seattle, a carelessly built neighborhood at its sodden worst at this darkest, dreariest time of the year, when the Christmas trees lie lifeless on the curbs next to packing boxes disintegrating in the rain in front of ramblers put up in a hurry fifty years ago that look like they too might cave in at any moment.

  What has happened to Mom’s brain, what brought her to this joyless place, is not unlike what has happened to her Montana hometown. In its prime, Mom’s brain balanced teaching junior high English to refugees, raising six children, dating a widower with three kids of his own. In its prime, Butte was laced with firmly planked, interconnecting tunnels humming with human activity, rich with copper ore. Now, Butte is gouged open, scraped clean, dominated by a giant pit full of toxic wastewater that kills every doomed bird that tries to land on its oily surface, just as the plaques and tangles in Mom’s brain kill every thought that dares to fly from one neuron to the next. There might be a fluttering of recognition—the taste of chocolate pudding, a daughter’s voice, sunlight striping through the blinds—but rarely enough lift-off to form a sound, let alone an airborne word.

  The constant misfiring wears her down; when she drops off to sleep her chest goes up and down like an injured robin’s. But it also makes her frustrated, furious, and even if she can’t string a sentence together, she can get that rage to her muscles. And that is why she’s here. Seattle Gero Psych is the fourth world of dementia care, where they take the hopeless, helpless patients that no one else will take: patients who are a danger to others or to themselves.

  That would be our mom, on both counts.

  A week ago, on her second night in the Fairview Terrace—the shiny new assisted living home that specializes in Alzheimer’s care where we had moved her after two years at the Lakeview—Mom had wandered into the wrong room and pushed a tiny, frail woman out of the bed she thought was her own. It was well after midnight. No one saw it happen. But imagine: You have no short-term memory, you’re in a place you’ve never been before, you wake in the night because you have to pee. You grope your way into the bathroom but then coming out, which way is your bed? You turn the wrong way, open a door into a hallway, grope along the wall, find another door and open it. Ah, there’s the bed! But when you throw back the covers, you see a gnarled creature older than time, a goblin, a hag, and you scream and push her out as quickly as you can!

  And imagine: you are that ancient, mute neighbor and you’re shaken from your dementia-draped sleep by a vigorous seventy-year-old and pushed to the floor hard enough to give you a black eye that covers half your face.

  Now imagine: you are that ancient woman’s adult child and you are enraged, threatening to sue. How could the Fairview let this happen? There must be consequences!

  Fairview asked us to have a family member stay with Mom around the clock, “until she became oriented.” We complied. It was Christmas week. My twenty-one-year-old nephew volunteered for the overnight shifts. On the fifth night, the night before Christmas Eve, Matthew came to relieve his mother, my sister Kristie, and they were standing outside Mom’s room for a moment, talking about how she was doing, when she suddenly woke, tried to get out of bed, and hit her forehead on the corner of the bedframe so hard that blood started pouring out.

  Mom was panicking and in pain. An ambulance was called. Kristie rode with her to the hospital a few blocks away. Matthew followed by car. By the time they got to the ER, Mom was beside herself with anxiety and terror and refused to lie still while her wound was cleaned. So she was restrained and sedated and the next thing we knew, we were being told that she needed a stint in Gero Psych, that she wasn’t ready to go back to her new assisted living home—the one we’d searched so hard for, that specialized in Alzheimer’s care, that promised us everything was going to be OK, that even had a director from Butte, Montana who knew Mom was going to love it there.

  You hear “sedation” and you think rest and relief. But because the ER staff believed she was hallucinating, Mom was given Haldol, an anti-psychotic medication that can take weeks to wear off. Before Haldol, she was walking and, albeit often illogically, talking. After Haldol, her body literally curled into a stiff gnome-shape that had to be lifted in and out of wheelchairs. Her gaze turned glassy. She mumbled gibberish. She drooled.

  At Seattle Gero Psych, as the Haldol slowly worked its way out of her system, she began to flail and yell and rage. Dan, from Great Falls, tried not to restrain her any more than was necessary.

  I remember a friend telling me that all she knew is that she could never put her father in a nursing home. I remember sitting with Mom at Seattle Gero Psych, spooning yogurt into her mouth, thinking, Easy for her to say. Easy for anyone to say who has never been here. Never been surrounded by these angui
shed, thrashing, moaning, babbling faces. Never seen dementia at its torturous, devil-incarnate worst.

  I wanted to leap up and go get that friend and bring her back to Gero Psych with me. Make her plead with my mom to eat, just a little, please, Mom, you’ll feel better if you eat a little! Make her try to gently uncurl Mom’s stiff limbs. Make her hum a tune that might be soothing while she stroked Mom’s knotted brow: Hush, little baby, don’t say a word.

  I remember scolding myself, reminding myself that we were all very tired: not just me and my family members and all the people at Seattle Gero Psych, but the whole country, including my friend. It was January 2002. We were not yet accustomed to being a nation at war. 9/11 still felt like yesterday. My brother, who lived in a commuter town in New Jersey that had suffered its share of 9/11 losses, mostly young fathers just like him, was having trouble sleeping or eating. No one I knew, on either coast or in between, was sleeping well.

  My last really good sleep had been in the very early morning hours of September eleventh. In my dream, I was strolling through Pompeii and it was so gently breezy and lush, so quiet after noisy Naples, that I didn’t want to wake up; I wanted time to stop like it had in Pompeii. But the alarm rang and I went downstairs to make my children’s lunches, and I turned on the radio and you know the rest.

  I really did visit Pompeii when I was nineteen and it was indeed peaceful. Walking the grassy lanes, looking into the windows of all the carefully excavated homes where everything had ended in an instant, I remember being moved not so much by the implied terror of that last moment but by the evidence of simple pleasures, the glimpses of the lives the Pompeians had lived: bread baking in the oven, wine in the press, a puppy under the table. They had lived two thousand years ago, but they were not so different from me, a college girl seeing ancient places for the first time. They had boisterous families like my own tribe back in green, volcanic Seattle. They loved each other and made meals together. They listened to music and put art on their walls.

  I don’t know why I dreamed of Pompeii, twenty-five years later, on that night of all nights. We’d had an earthquake in Seattle back in February 2001, and I had crouched in a doorway and watched the kitchen sway back and forth, crockery smashing to the floor. Maybe the quake was on my mind.

  Mom had not noticed that February earthquake, even though the epicenter was very near her retirement home. My sisters and I were alarmed by this. Surely it was a sign that her downhill slide was accelerating. An earthquake is something you physically feel, that stays with you, viscerally, for a long time. She had also not really taken in the fact that we had a new president, one that should have outraged her after her many decades as an enthusiastic Democrat.

  But by September eleventh, we were way beyond wondering about her awareness of political or seismic events. She had stopped bathing, shampooing, or washing her clothes. She would not let the staff in to clean her apartment. She resisted our help, too, though Kristie got pretty good at getting her clothes laundered and her piles of shoes, CDs, and magazines sorted. Lisa scooped up the mail and bills and Caroline took her to the supermarket. I got her out for walks on Lake Washington and James, back in New Jersey, managed the modest nest egg that paid her rent. We knew we had to move her to a home that specialized in Alzheimer’s care and we were frantically shopping for one.

  Fall 2001 was a season when time itself seemed to alternate between inertia and mania, the clock racing as we searched for a new place for Mom, driving all over Seattle, listening obsessively to NPR—the frantic search for bodies at Ground Zero, the constant drumbeat to war—and then the clock nearly stopping when we spent time with Mom, trying not to help as she doggedly put on her shoes, trying to look interested as she said the same thing over and over.

  Inertia and mania had come to define my work life, too. I had been hired to do media trainings for a coalition of grassroots environmental organizations all over the Rocky Mountain West. The idea was to get ranchers, farmers—the people who lived in all the places the Bush administration was proposing to open up to gas and oil drilling—comfortable with telling their stories. It was a tough schedule—eight Saturdays, with Saturday stayover flights to make it affordable for the nonprofits who were paying the bill—which for me would mean not only burdening my sisters with more Mom care but missing all those weekends with my children, then nine and twelve. Though I hadn’t done a lot of this kind of work, my colleagues thought I was the right one for the job, so I was trying to have faith in their faith in me. “Just be yourself,” they said. “Talk about your news experience and your family’s Montana roots and Rus coaching Nick’s basketball team and they’ll love you.”

  The first training was supposed to take place in western Colorado on September fourteenth. We put it off for a week.

  Walking into the sluggish chaos of Sea-Tac Airport on September twenty-first, I saw what this assignment would now be, now that the world had changed: hours of airport and airplane inertia draped in trembling dread, followed by the mania of leading an eight-hour training, followed by more dread-soaked inertia on the trip home. All of it infused with longing to just be with my family, with sorrow that Mom was slipping away, with guilt that I wasn’t doing my share because I’d said yes to this crazy job. And yet the work felt more important than ever. “Conservation is patriotic,” I kept telling first myself and Rus and later the people who came to the trainings. “If we rip open the Rockies for a few drops of oil and gas, the terrorists win.”

  So while my mom searched for shoes and stashed her dirty underwear in the kitchen cupboard and her shampoo in the refrigerator and her CDs in the VCR, I spent my weekends flying and driving through the landscape that had shaped her—a world where everything, to my Seattle eyes, was vividly, sharply drawn: the sun setting hard and quick behind zig-zagging peaks, the morning main streets of Durango or Trinidad or Billings or Great Falls as harshly shadowed as Edward Hopper’s diners and hotel rooms. Mom had been an artist, too, though she preferred to paint from photos she took on her travels. Maybe the deep contrasts of sunny places like Greece and Italy suited her Montanan eye better than the soft grays outside her Seattle window. She was still painting, occasionally, with an artist friend of ours; her most recent works resembled my three-year-old niece’s.

  The Saturday trainings humbled me. I may have been tired all fall, but many of the people who came to the trainings were near collapse. On top of running their ranches and farms and businesses, they were fighting sudden and aggressive bureaucratic nightmares: drilling had begun on land they’d leased to graze their cattle for generations, or under their child’s school, or next door to the home they’d sold their city house to buy, the home where they dreamed they’d start a new life. They could barely afford to give up a Saturday, and yet they came. They wanted to learn how to tell their stories. They wanted to believe that reporters could help them. Some of them had just found out that the mineral rights on their own land were not in fact their own, and drilling was about to begin. Some had just learned that drilling was already under way, deep below their neighborhood, and that’s why toxic plumes were occasionally flaring up out of the storm drains. Others had just learned that the land their grassroots group had been struggling to protect, or their tribe’s sacred burial place, or their county park, was now officially open for gas and oil exploration. For them, the war on terror was not taking place in some faraway country; it was happening on their own back forty. They’d been to places like Butte, Montana: they knew what the future could look like.

  Nine years later, the Bush era is finally over and I wonder how they’re all doing. I haven’t kept up. I could blame the frenzied, fall 2001 pace of the dementia drilling into Mom’s brain, which led me to seek work that did not demand so much travel. I know they won a few victories and lost a lot more; I know that the Iraq War sucked media attention away from their struggles, just as it sucked attention away from the gutting of medical research into illnesses like Alzheimer’s and hundreds of other quietly committed
burglaries during the Bush years.

  I know that some of what the Saturday trainees feared was what had happened to Mom. All along the spine of the Rockies, in every town where hard mineral mining and coal, oil, and gas exploration were starting to boom again, there were whispers about cancer clusters and spikes in childhood asthma and unexplained high rates of Parkinson’s, multiple sclerosis, ALS and—always in the background, always harder to detect—Alzheimer’s disease.

  The easy retort to the health whisperers is to say, Every place in our world is toxic. Even deserted islands and Arctic ice floes are drenched in acid rain. We need jobs, we need oil; we can’t have either without risk. But some of those stories Mom used to tell over and over again haunt me now. Nothing grew in Butte. When I was a child, no one even tried to grow grass or trees or flowers in the soil of the Richest Hill on Earth, so my sister and I played in the dirt. We filled old coffee cans with dirt and stirred in water and made mud pies. And the sky was filled with dirt, too: soot and smoke bellowing from the mines, twenty-four hours a day.

  Nothing green may have grown, yet Mom grew just fine. Early on, she was pegged as a high-achieving girl, a girl whose brain was something special.

  Now, in the fall of 2001, as the world reeled and recoiled and tried to right itself after 9/11, my mom’s brain was reeling too, finally buckling under the long assault of plaques and tangles.

  Alzheimer’s disease does not progress in a smooth, downward line. My sisters and I knew this. But the steep slope she was on that autumn caught us all by surprise. In hindsight, we can see clearly that we missed our chance to move her when she might have been able to weather it better. And we can see that our first mistake had been to move her, in 1999, from her house to the one retirement home she deemed acceptable, thanks to its view of Lake Washington—even though it did not have an Alzheimer’s wing—because we wanted so badly to believe she could stay there for a while before we’d have to move her again.