Her Beautiful Brain Read online

  Round Six: “Ron is suffering from double vision that seems to be connected with a sinus condition that has been causing him almost constant headaches.”

  Round Seven: Ron has sinus cancer.

  Round Eight: Ron and I are getting married!

  I missed the wedding. July 2, 1977. They felt they had to do it before Ron started treatment. I arrived home a week later, just in time to help with the move from our house to the Tocantins’ house.

  The radiation treatments made Ron so sick that he spent most of his time in bed. But he and Mom assured all of us that he would feel much better once the radiation was over, even though we could hear him throwing up at all hours of the night and see him shrinking inside his jeans and sweater, which he wore even on the warmest days.

  Then the phone company told Mom she didn’t have the right gungho sales attitude. She was cut from the training program.

  Maybe she was just no good at selling phones. Or maybe her lack of excitement had something to do with being terribly distracted by a new marriage to a very sick husband. Or with the distractions of nine children, between the two of them, coming and going all summer.

  Meanwhile, I was working nights at an Ivar’s fish ’n chips restaurant and counting the days until I could see Dick again. I had finagled an affordable way to fly back to college in Massachusetts via North Carolina.

  A day after I landed in Greensboro, Mom called me at Dick’s parents’ house. It was September second and so thickly humid—in a way that I had never experienced—that I didn’t quite understand how to breathe or move.

  We were in the kitchen filling Mason jar glasses with ice water when Dick’s mother answered the phone.

  “Ann, it’s for you,” she said. “Your mom. Why don’t you run up and take it in your room?”

  The guest room was in a corner of the house that the air conditioner seemed not to reach. I sat down on the bed and picked up the phone. The extension phone, as we used to say. My hands were clammy. I’d left my water downstairs.

  “Mom?”

  “Oh, honey,” Mom said. “I don’t know how to tell you this but I’m exhausted so I’ll just tell you.”

  Sweat was running in a stream between my breasts.

  “Ron died last night.”

  Now I really couldn’t breathe. My heart was starting to pump desperately as if it couldn’t find oxygen.

  Mom was saying more. Words like quickly, no idea, shock.

  There were black spots dancing in the room.

  “Mom, I want to come home. I want to be there.”

  She said she didn’t want me to come home. It would cost too much and she didn’t want me to miss school. She said she had to go, that she had to get through so many more calls, that we’d talk soon.

  When I hung up the phone, I stood up too fast and almost fainted. There was nowhere in Dick’s house to breathe! How could anyone live in this awful, unbreathable air! I was crying but it felt more like gasping. I wanted so much to be home that very minute, to put my arms around Mom, do something for her, anything.

  It still seems so strange to me that I didn’t go home. Neither did Lisa, from her college in California. But it was a different era in our family history. Death was not something we knew. Grieving was not something we knew. And no one had any money for our plane tickets.

  But it meant that, during the darkest time of my mother’s life that I had ever known, darker even than her divorce from Dad, I wasn’t there: to make her coffee after dinner or go to the grocery store or hang out with Jimmy and Caroline and Charles or whatever she wanted me to do. It meant that I had to wait three months before I could finally hug her.

  It was hard to believe that I had been so worked up about the school levy failure and its shocking unfairness. Now Mom was on some cosmic slide, some divine lab test in which she was the guinea pig: just how much unfairness can one person take? Ron’s three children seemed to be part of the same experiment: first their mother, now their father?

  “She was never the same,” we love to intone dramatically when describing a survivor of tragedy. One would hope so. What would be shocking is if someone was the same. Mom was swimming her own Mekong River now: getting laid off; getting married; getting laid off again; losing her new husband; gaining three orphaned stepchildren, one of them still in high school—all in a handful of months.

  May. June. July. August. September.

  “If love be rough with you, be rough with love,” said clever, doomed Mercutio. Love had been rough with Mom all right. Love delivered the knockout blow and walked away from the ring. Left her bleeding and bruised and alone.

  Left her in the middle of it all, as the R&B song goes:

  But I wonder what my friends would say.

  If their world just came down one day.

  And they were in the middle of it all.

  Caroline, who was twelve at the time, knew Mom sometimes stayed in bed all day while she and James and Charles were at school. James, who was fourteen, said she kept up a good front: she made conversation, she cooked dinner every night. But he remembers once being in the car with her when “Fire and Rain” came on the radio and she began to cry and he didn’t know what to say.

  Charles was a senior in high school. Suddenly his father was dead, his brother and sister were back on the East Coast, Futuro had gone back to Japan, and his new housemates were Arlene and her two adolescent children.

  “The only thing I knew how to do was what my dad had always done,” Charles said. “Not talk about it.”

  He remembers going to dinner that fall at a family friend’s, wandering upstairs and opening a door, only to find Mom sobbing her heart out in the arms of their hostess. He closed the door quickly. Never talked about it.

  He remembers Mom saying, some years later, that even though Ron never told her he loved her, she knew that he did.

  For Charles and James and Caroline, the fall of 1977 was a surreal and disorienting season. But at least they had school. They had their daily routine. Charles drove his new stepbrother and stepsister to their junior high every morning.

  For Mom, that fall must have felt so terrifyingly empty. She wasn’t working, though she knew she would have to start soon: Ron had left her in charge of a large house and a rapidly shrinking bank account. She was alone in the house all day, a house full of another family’s things. She took to wearing Ron’s fisherman sweater.

  A year and a half after Ron’s death, Mom wrote an impassioned letter to the Seattle School District about how much she loved teaching and deserved to be rehired. “I have continued as a substitute teacher for many reasons, the craziest of which is that I really want to teach in Seattle, where my six children have all attended school, because I think the district needs teachers with my energy, qualities, and dedication,” she wrote.

  The district moved her up from daily sub to a succession of long-term fill-in gigs: maternity leaves, medical leaves, sabbaticals.

  At last, in 1985, she landed and stayed for five straight years at the school she loved best of all: her children’s alma mater, Roosevelt High School.

  It was a good stretch. Until her brain began to betray her. With little scratches, at first, “not so deep as a well, nor so wide as a church door.”

  But, like Mercutio’s mortal wound, they were enough; they served.

  “I used to think I could do anything I wanted to do,” Mom wrote on a page torn from a notebook she kept for a few weeks in the summer of 1984. “I think I still believe that, in spite of all the evidence to the contrary. But what do I want? I think I truly desire to experience serenity and contentment in solitude … maybe I’m not meant to be alone. However, alone I will be frequently, and I must learn to do more than just deal with it. I want to enjoy creatively that time alone.”

  She made a list of goals: financial, social, weight, exercise, art, “writing for personal satisfaction and profit.” She thought she might write “anecdotal advice to single parents and older women suddenly found alone.” Tha
t was item number three on her writing-idea list. Number two was short stories. Number one was her mother’s story: “from her parents’ emigration to living at Parkside,” the retirement home where Grandma Cere spent her final year. It would be, Mom wrote, “an exploration of her experiences/character/milieus/friends/associates/family from her daughter’s very subjective viewpoint.”

  It’s just a scribbled page ripped from a wirebound notebook: a page that looked like it had been crumpled and thrown away, and then un-crumpled and tucked in the same file where she kept her will.

  As if she wanted us to know what she would have done. What she had meant to do.

  Sisu

  Dr. Forsythe was a neurologist who had tested Mom; he was not her regular doctor. His office, lined with bookshelves, felt more like a professor’s than a physician’s. He looked like a professor too, with his goatee and crossed legs and large, expressive hands. I’m not sure what my siblings and I were hoping for when we requested a meeting with him. Hope, I suppose, some special brand of hope that could not be transmitted over the phone but could only be dispensed in person. By him. To us.

  And so there we were, Kristie, Mom, and me, sitting across an unnaturally tidy desk from the bearded doctor, our knees pressed together, our faces upturned, like three polite co-eds asking for an extension on a term-paper deadline.

  Dr. Forsythe began by saying a lot of encouraging things about Mom’s brightness and competence and how her intellectual skills would help her cope.

  He talked about having confirmed, through three screenings over five years, her brain’s “slow deterioration.” He talked about medications that might slow some of the symptoms of a “dementia such as Alzheimer’s disease.” He talked about considering moving from her home to somewhere safer.

  He avoided saying the exact words, “You have Alzheimer’s disease.” But he came as close as he could.

  It was a warm day, for June. My mind wandered to the wool sweater vest Dr. Forsythe was wearing under his white lab coat. The vest looked itchy and lumpy and homemade. Maybe his mother knit it for him and he was going to meet her for lunch.

  I put my pen away because I could see that Kristie was taking plenty of notes. I noticed how pretty Mom looked, her face animated as she listened to Dr. Forsythe.

  But mostly I felt like I could not wait to get away from this stuffy office, from the doctor’s kind voice, from Kristie and her notes, from Mom and her stoic calm.

  I wanted to get away because I was having the one thought I knew I should not be having at such a moment: I’m not up to this. Whatever this is.

  Claire’s eighth birthday was a few days away. I was about to host a slumber party for a dozen eight-year-old girls. That I was up to. I was concerned about Rus—he’d been working too hard; he seemed brittle and distracted. That, too, I was surely up to. But this talk of deterioration and dementia and safety and moving; these notes that Kristie was furiously scribbling; this notion that our mom, of all people, was headed down some sort of grim path that ended in—in what? Drooling in a wheelchair?

  No. This I was not up to.

  Perhaps my face was projecting this heresy. Dr. Forsythe offered to summarize the meeting in a letter to Mom, with copies to Kristie and me.

  In his single-spaced, nearly two-page letter, he gently explained his findings, such as, “By far the major difficulty is in new learning and memory functions … It appears that it is extremely difficult to maintain newly experienced information over a time period of say fifteen to twenty minutes or so,” and “We have no way of knowing really the course of future deterioration, but I suspect that the best estimate is that things may continue to very slowly change over the years.” Dr. Forsythe concluded by saying, “I am quite impressed with your strength, honesty, and determination in dealing with the stresses this illness has brought upon you. I am also quite impressed by your very supportive family.”

  Things may continue to very slowly change … your strength, honesty, and determination … your very supportive family.

  I wish I could ask Mom’s forgiveness for not being very supportive that afternoon.

  For not even rallying the way I did the first time she rode the chairlift to the top of the ski area and I, her partner, at all of about eleven years old, found myself saying things like, “Mom! Think of sitting at a chair at the dinner table. The one thing you never do is fall off your chair, right?”

  There she was, all strength, honesty, and determination, not anywhere near falling off her chair while a neurologist in a sweater vest talked about her “future deterioration” and I, her grownup daughter, couldn’t wait to go buy slumber-party snacks.

  Why is it that we talk about illness as if we’re at war? The obituary pages are full of people who waged long battles, courageous struggles, fought hard, never gave up. But it’s not like anyone ever wins, so why do we pretend that they might have? If only—what? If only they’d fought harder?

  Strength. Honesty. Determination.

  When Mom was diagnosed with probable Alzheimer’s disease, most people had no idea what to say. But some people started talking to her like she’d just been drafted. “Tough luck, the worst, but you’re so smart, Arlene, you can fight this thing.” To us, they’d say things like, “Your mom is one tough cookie. She’s not going to take this lying down.”

  Lots of people wanted to help her choose her weapons: crossword puzzles, blueberries, Gingko, Vitamin E, green tea, red wine, exercise.

  Others recommended defensive fortifications: hide-a-keys, ID bracelets, timers on outdoor lights, daughters on speed dial.

  Loyal friends took on a USO role, keeping regular, morale-boosting dates for dinners and plays and concerts. We, her children and grandchildren, were sometimes R&R and sometimes the backup support troops: the drivers, bursars, provisioners, strategists, medical officers.

  But many, many hours of every day and night, she was by herself, walking a dark and lonely vigil. She knew this wasn’t some “battle” she could “win.” And I wonder what those private moments, when she didn’t have to pretend to be tough, when there were no witnesses—I wonder what those moments were like.

  I don’t know.

  I’m sure there were many that she never told us about. Either because she really didn’t remember, or because she did and she knew how pathetic it would sound to us.

  One day I stopped by her house and saw that her arm was black and blue.

  “Oh, it was just a little slip down the stairs,” she said. “You know how easily I bruise.”

  It didn’t look like a little slip. It looked more like she’d tumbled all the way down the stairs and landed hard on her arm, maybe because she had forgotten the stairs were there.

  And yet that moment of landing at the bottom of the stairs, in that moment surely she felt terrified: What had just happened? What had her brain just done, or rather not done?

  When our son Nick was born in April 1992, Mom had just decided to retire from teaching a year early. I viewed the situation entirely selfishly: now she could be my part-time daycare. I told myself it wasn’t really all about me, that Mom loved babies, was great with babies, had told me she wanted to do it. I told myself there was no danger in it, that being unable to quote Shakespeare to teenagers the way she used to did not disqualify her as a loving grandma and babysitter.

  But a pattern was starting to develop, a pattern of there being no pattern.

  I would arrive excited to see Nick and brimming over with breast milk. One of my great pleasures, when Claire was a baby, had been this moment of arriving at her daycare and swooping her up and sitting right down to feed her. But with Mom, I could not count on this happening. She couldn’t remember not to feed him, even though she was proud of having breast-fed six children back when it wasn’t the fashion.

  I tried leaving notes. I tried calling her and reminding her. But still, I would show up at three thirty, after fetching Claire from preschool, and there they would be: Mom, Nick, and an empty bottle, looking at
me guiltily from the couch.

  “But he was hungry,” she would say. “And he’s such a good eater, and you know there’s just no stopping him once you start. And—I’m never quite sure when you’re coming.”

  “Mom, I come at the same time every day,” I would say. “It’s not such a long time, from lunch to three thirty. But if he’s really hungry you’re supposed to call me, remember?”

  I knew how much she loved her time with Nick; I knew he made her feel young again, like he was her little boy. I knew she wheeled him around the neighborhood and all the shopkeepers and neighbors admired him—but why couldn’t she remember what it was like to be full of milk, dying to feed your baby? Knowing you’d have to go home and use the dreaded breast pump, while wrangling a baby and a three-year-old?

  I remember one day walking in and seeing Nick, full and happy, and the bottle empty and feeling the pain in my breasts and bursting into tears and saying, “I’m sorry Mom, I know it’s hard to remember stuff but this is really hard for me.” I cried all the way home, Claire and Nick looking at me, puzzled, from their car seats. I remember knowing that I wasn’t really crying about the milk and the pain and the hated pump. I was crying because I had looked forward so much to this time with Mom, this time when she would be a young grandma and I would be a young mom and we’d have such great conversations and memorable shared moments. But it wasn’t like that. Something was wrong with her. Not only could she not remember not to feed Nick, she couldn’t remember the plot of a book or a movie or what we were talking about five minutes ago.

  I was crying, that day in the car, because I was already starting to miss her, even though that made no sense, since she was right there.

  Maybe she cried too, after I left. She must have missed herself as much as I did: the Arlene who once upon a time could remember a thousand things, who read Tolstoy while she nursed her babies, who couldn’t imagine how Anna Karenina could leave her child.

  I wonder whether it was worse for her before or after she knew what it was that was slowly strangling her brain.