Her Beautiful Brain Read online

  But she was there only two years before we saw that the time had come.

  So we frantically looked and finally found the Fairview Terrace, and Sheila from Butte assured us it was all going to work out just fine. On a December afternoon we orchestrated the move. Caroline took Mom home to her house for the day while the rest of us packed and moved and unpacked her belongings. She was moving from a one-bedroom apartment to one room. We had a few weeks to clean out the Lakeview apartment, so we focused on making her new room look familiar: putting her paintings and photos on the walls and her afghan on the bed. Fairview was decorated for Christmas and it felt festive. We reasoned that it was a good time to move because the Christmas celebrations at the Fairview and at our homes would be a good distraction for Mom.

  Just the day before moving day, I had taken her to see the Christmas pageant at our church, featuring a motley band of kids dressed up in towels and sheets, including our daughter Claire as an angel and our son Nick as a shepherd. Getting her up and clothed and making it to church on time had been a sweaty ordeal and I was embarrassed by her awful, greasy hair and ashamed of myself for being embarrassed and also ashamed for wishing I could just relax and enjoy the pageant without worrying about whether Mom might shout out something strange in the middle of a quiet moment. But we made it and she saved her shouting for the Christmas carols, which she belted out with gusto.

  I wish I’d known that the pageant would be the last grandchildren’s event she would ever attend—the last public event, period. I wish I had simply savored the fact that she was there instead of brooding about her hair and whether there was any way to persuade her to let one of us wash it. I wish I’d known that this homespun pageant was as close to Christmas as Mom was going to get that year, or any year for the rest of her life.

  But of course I didn’t know, I couldn’t know, that she would live at Fairview Terrace for exactly five days. That she would push an old woman out of bed and then, a few nights later, crack her head open getting out of her own bed. That she would spend Christmas in the hospital in a Haldol fog and be discharged to a place we’d never heard of called the Seattle Geropsychiatric Center, better known as Gero Psych. That before 2001 became 2002, we’d see our Mom in restraints, because although she was now unable to hold a spoon, she was still strong enough to hit and hurt the Gero Psych nurses and aides.

  The hardest part of the Christmas pageant had not been Mom’s greasy hair or worrying about what she might do. The hardest part had been seeing the other grandmas, well-coiffed, in dry-cleaned holiday sweaters, gently smiling, tearing up when their own grandchildren bravely shouted out their lines. Sitting in the Gero Psych day room ten days later, coaxing Mom to eat some yogurt, it was thinking about those grandmas that made me want to cry. Or rage.

  The fourth world. When people said that about countries like Haiti, they meant that it was hopeless. And that was what was going on at Seattle Gero Psych. Patients and their families were being purged of hope. Taught how to live without it, because there really wouldn’t be any more. It was a hard lesson to learn. I can imagine, that for Dan and Dr. Sorensen and the others, it was also hard and heartbreaking to teach. For eight Saturdays in the Rocky Mountains that fall, I had been trying to teach people to hold on to hope in the worst of circumstances, not knowing that at the end of the season I would have to accept that there was no more hope for Mom. No more pageants, no more walks, no more joy.

  John the Divine

  When people ask about Mom’s Alzheimer’s disease and what it was like for me and my brothers and sisters, I don’t talk a lot about John, partly because he was not around much during the last decade of her life and partly because it—he—was so complicated. My big brother wanted so badly to remain part of our family. But John couldn’t seem to stop himself from sabotaging one dinner, one Christmas, one family relationship after another.

  He was my mother’s first born and his brain, like hers, was strangled to death—though the strangler was not Alzheimer’s, it was a brain tumor, and it moved like a serial killer, skilled and quick. Five weeks. But long before his dramatic and early exit on a leaky winter day in 2004, John stood apart, marked, a prophet.

  He looked like Jesus and he raged like Jeremiah. As a young man, he was John the Baptist, urging us all—from Mom down to four-year-old Caroline—to take the plunge into a new, anti-establishment world order of peace, love, marijuana, LSD, personal computing, alpine skiing, and free long-distance phone calls courtesy of a gizmo known as the Black Box. He was John the Evangelist, exhorting us to listen to his revelations of the end of time, the many layers of space, the several kinds of infinity. He was Jonah, spewed out by the whale, stumbling through Nineveh, sounding his lonely alarm: Only forty days, citizens! This decadent, cocktail-party culture is doomed!

  But it wasn’t Nineveh that had only forty days; it was John.

  He would tell you, if he could, that he was marked for struggle before he was born, because the first thought anyone ever had of him was: Mistake. Not wanted. My mother would tell you, if she could, that once she knew she was pregnant, at nineteen, of course John was wanted. That she and her young fiancé accepted the call. They got married. They found a tiny home to shelter their newborn child. John’s father pursued his trade: he enrolled in dental school. His mother, our mother, gave up her own dreams to support her husband and care for her new baby.

  Their first home was an apartment in an old brick building, long gone now, torn down for the 1962 World’s Fair. The Seattle Rep’s oddly curved Bagley Wright Theatre stands where it once stood.

  Their second home was another apartment in another brick building, a little California-style, courtyard cluster in north Seattle. That was where John’s dad told Mom he was leaving her and John and baby Kristie for their close mutual friend Connie and for Paris—France, not Texas—where, unbelievably, he was posted during the Korean war: a freshly minted dentist to the troops.

  Fifty years later, in February of 2004, I had tickets—purchased weeks before the brain tumor—to see the Rep’s production of William Saroyan’s The Time of Your Life with John’s ex-wife Rebecca and two of his sons. We had a mutual friend in the cast. As the show date approached, we decided we would still go. It would be a break in the tension of keeping vigil at John’s bedside; our other brother and sisters and John’s father would all be there with him. But at the last minute, Rebecca cancelled. She had a hunch that this rainy Sunday would be the day of John’s death, she later said, and she was right.

  Who knows? Maybe John was more able to time his last breath than we ever could have guessed. He waited until his sons were by his side. He waited until some of the rest of us were seated over the site of his first home, watching a drama about the brevity and poignancy of life. And, like an Old Testament numerologist, he waited for the most mathematically supple date at hand: Leap Year Day, February 29, 2004.

  “In the time of your life, live—so that in that wondrous time you shall not add to the misery and sorrow of the world, but shall smile to the infinite delight and mystery of it,” Saroyan wrote. The poignancy of his prose, the empathy with which he sketched his quintessentially American cast of barroom dreamers! And yet, according to the Rep’s program notes, the playwright himself was “passionate and arrogant,” a man who had “little use for the niceties of society, and frequently rubbed people wrong with his outspoken opinions and fiercely held principles.” Saroyan was a man like my brother, who longed to “smile to the infinite delight and mystery of [life],” but knew that much as he longed to, he simply couldn’t.

  John comes back to me now, after death, my memories of him transformed into images of prophesy, crucifixion, annunciation, ascension.

  When our big family gathers for Christmas, drinks clinking, hors d’oeuvres passing, I see him circa 1970, a bone-thin college student, on the night he stormed into the stately living room of my paternal grandparents’ home and turned over their vast, perfectly polished coffee table, sending glasses crashing and can
apés crushing underfoot, raging about materialism, capitalism, imperialism, damning all present with charges of idolatry, hypocrisy, greed, and complacence.

  When I lie flat on my back in the night, unable to sleep, I see him, spread eagled on his waterbed, arms outstretched, his Jesus hair fanning out on the pillow, naked except for his white briefs.

  Walking into Benaroya Hall to see the Seattle Symphony one wet night the summer before he died, I see him middle-aged but still bursting with urgency, boyishly happy that I have accepted his invitation, lit from behind by the tall rain-streaked windows, launching into a torrential soliloquy about all the stories he wants to tell, whole novels and books, if only he had time to write them down.

  Pausing to admire Mt. Rainier on a clear day, I always look just to the left, where there’s a kneeling outcrop of the mountain near the ski area we often went to when we were children, John flying down the slopes like a crazy angel while the rest of us, happy but earthbound, gamely snowplowed and stemmed.

  Opening my laptop, I think of one day in the early seventies when we stood in the kitchen, arguing about computers—he, home for the summer from M.I.T., me, a dreamy teenager who still wrote in her journal with a fountain pen.

  “Someday, Ann, every desk in the world will have a computer on it, even yours!” he yelled and I yelled back that just because he was obsessed, that didn’t mean that the whole world was and that I for one would never ever want or need such a thing. Never! Who did he think he was, predicting the future with such confidence?

  John wanted what human beings want—love and meaning—but he wanted divinity too. He wanted everyone to see and worship his special flame. He wanted everyone to comprehend that the computer technology he was working on was going to change the world. And from us, his parents and brother and sisters, he wanted even more: he wanted us to recognize his brokenness, to mourn with him for all that had gone wrong in his childhood, to appreciate the hardships he’d suffered, the sacrifices he’d made, as the oldest child in a messy, twice-divorced family. He wanted me, especially, the doted-on firstborn of the “new” family, to feel some measure of his anguish. When we were children, he kept up a constant stream of cruel teasing: you’re ugly, you’re spoiled, no boy will ever look at you, why can’t you be like your sisters.

  His timing was forever off. Just as he’d been the combustible teenager when the rest of us were cute kids, he was already a scorched, damaged, disillusioned adult when the rest of us were barely launching our post-college lives and beginning to wonder what was up with Mom. With each passing year, John got more angry and more needy and anything any one of us tried to say or do was never enough or never right or just made things worse. Finally, right around the time that Alzheimer’s disease was ramping up its sticky assault on Mom’s brain, John took his wife and three sons and pulled out of the family altogether.

  We missed them. Mom grieved. But John had worn us out. He had worn us down. So we turned away. We had our romances, marriages, jobs, babies; we wanted to live in the wondrous time of our lives. And we wanted to help Mom savor what time, wondrous or not, she still had.

  Years passed. Kristie kept in touch with him; occasionally I would hear from him. He had read another book about how feminism had destroyed civilization; if only we would read it, we would understand everything. Or he had finally figured his life out: it was his stepdad, my dad, who was to blame for screwing him up, not his real dad. No, scratch that—it was Mom. Everything was her fault; why couldn’t we see that? If she could just apologize, John could forgive her and move on.

  When we pointed out that Mom could barely speak at all any more, let alone apologize to him, he was dismissive, as if Alzheimer’s disease was a ruse she had cooked up to avoid him. He had not seen her since she moved out of her house. He did not know that she had long ago signed documents giving all of us except for him the power to make her legal, financial, and health care decisions.

  A year before he died, though of course we didn’t know that at the time, John called Kristie and me, begging for sympathy, after Rebecca told him she wanted a divorce. We were wary. We had already talked to Rebecca and had started the slow process of getting to know her and the boys again.

  John was so steeped in his own anguish that he didn’t seem to understand when we tried to tell him how far Mom had fallen into the mire of her illness.

  Then he started getting such bad headaches that he wondered if it could be the beginning of Alzheimer’s. Leave it to John, we said to each other, to turn Mom’s illness into an excuse for his own special brand of hypochondria.

  And then once again, he was maddeningly right: his brain was under siege. And the time of his life was suddenly—gone.

  When John was a boy, he focused all of his anger—about his dad leaving, about my dad arriving—on me, the first child of his mom’s new marriage. He singled me out for vicious tirades in front of my sisters and urged them to shun me too. But it was never enough. He couldn’t stop. He couldn’t stop hating. So I hated him back, even though I didn’t want to, because I also loved him. I loved him worshipfully, the way little sisters do, no matter how they’re treated: he was my big brother, he knew everything, he could do anything, he was smarter and more fascinating than anybody else’s big brother.

  I longed for him to decide that I was as worthy of his affection as my sisters were. I asked myself, night after night, why I couldn’t just stop hating him or loving him. Just stop. It wasn’t my fault his dad went away. It wasn’t my fault that I was his stepdad’s first born; I couldn’t change that. Why couldn’t he forgive me? He looked like Jesus; why couldn’t he be like Jesus?

  He grew up and, briefly, tried. I can’t remember how it started, exactly, but we became tentative friends. I know it was after he left for M.I.T. Maybe when he was home during the summer he caught me poring over his stash of college catalogues. Maybe he could see how badly I, like him, needed to get out of Seattle—which, in 1974, was still mainly known to the rest of the country as the setting for the TV show, Here Come the Brides. I was not a math geek like him, but I was an oddball like him, a bookworm and a writer trapped in a town where skiing and boating skills were far more highly valued. He encouraged me to apply to east coast schools, explaining that they were all hungry for “geographically diverse” kids and that I was sure to get financial aid. He was right.

  At the end of my freshman year at Wellesley, when he was in graduate school at Berkeley, I called him and told him I wanted to fly to San Francisco and then take the Greyhound Bus home and could I stay with him for a few nights? He said yes and I felt elated and brave and so proud of myself for making the call. I spent a weekend with him and fell in love with the entire state of California, which I had never seen before and which seemed, after my long, homesick year in New England, like an Eden overflowing with sun and tomatoes and strawberries and bare arms and legs and bongo drums. Driving through the Berkeley hills in John’s VW bus, sharing joints, I felt like I finally had a big brother, the real kind, the kind you could go to if your parents pissed you off or your boyfriend dumped you.

  Half a dozen years later, after I graduated, I became the first member of the family, after John, to have a computer on my desk at work: it was called the NewsStar and it had a squat black screen with orange Courier type. On it, I wrote “rip and read” roundups of wire service news stories for radio stations. Once my editor gave me the go-ahead, all I had to do was press a button and off my roundups went to hundreds of teletypes in hundreds of radio newsrooms. Imagine!

  My big brother had imagined.

  By the time I was tapping away on the NewsStar, John was well into his career in Silicon Valley, imagining all kinds of things. His first marriage hadn’t gone so well but he was absorbed in his work. Then he met Rebecca, a planner for a small city, a skier and an intellectual who could ski and think as fast as he could. They got married and moved back to Seattle. Mom was thrilled. We were all thrilled: we loved Rebecca. We dared to hope that maybe—living with Reb
ecca, living next door to the mountains he had missed so much—maybe John would be happy, or at least some John-version of happy.

  John and Rebecca found a house in a suburb a half hour from the ski slopes. They found good jobs. They had three sons, all bright and beautiful.

  But then, somehow, that old anger started to burble up again. Soon Mom, John’s dad, my dad, Kristie, me, and eventually Rebecca and the boys were on the firing line.

  And then, like Jesus, he suddenly died and set them free. Set us all free.

  And now we all have computers on our desks, or in our backpacks. And so John is everywhere.

  Early in his career, he worked on something to do with getting computers to produce colors, so I think of him sometimes when I’m shuffling through photos or video. Then he worked on something to do with calendar code, so I think of him when I buy a plane ticket.

  It’s been six years now since that Leap Year day of my big brother’s death. I try to stay in touch with his sons. The oldest is in Chicago, getting a PhD in math. The middle son is studying economics. The youngest is at St. John’s College, where they read all the Great Books. John would be proud.

  John’s oncologist told me she’d been seeing a spike in brain cancers like his among people his age who had worked around computers all of their adult lives. She thought it might be the PVC—all that plastic that houses everything, not the metals and toxins you might suspect.

  A few days after his death, I wrote this in my journal: “John believed so wholly in the promise, the force for good, that computers might someday be. And yet they may have killed him. What would he say, from where he is now? Was it worth it, worth a third or more of his potential span of life on this planet? Would he say it was random: Ann, I just drew the unlucky card? Or would he say it wasn’t just the PVC plastic off-gassing, it was the stress of being John, of never quite getting how to be smarter than just about everybody and still get along in this world?”