I knew then that having Margaret as a sister played some part in my decision not to have children. It’s not that I was worried about giving birth to a child with disabilities. The odds are against it. And the rational part of me knew that raising a non-autistic child wouldn’t be as difficult. A child could learn and grow and change in ways that might seem like magic to me after watching Margaret struggle to learn the kinds of things we take for granted: Look at people when you talk to them; eat your food in small bites, get dressed before you come out of the locker room, don’t spank Father Bach or run a fingertip up ladies’ pantyhose on the way back from communion. My mother, Margaret’s teachers, and countless others worked with her over the years and so did the rest of us family members. There was so much that she could never master, and in trying to help teach her, I had always felt like I was failing over and over again.
It was not rational, but I knew it was part of the reason I’d chosen not to be a parent. I wouldn’t ever know what my life would have been like if I had made a different choice, but that was something I had to live with, just as we all live with our choices.
There was so much I didn’t know. I still didn’t know how to play chess, and I didn’t care if I ever did. I didn’t know what it took to raise a child to feel loved and safe and independent. I didn’t know what Margaret’s life was really like, if she was happy, if she thought of me. I’d often wished I could have found more reserves of humor and laughter for her, for me, when we were sharing a house. I tried to remember when I first got the notion that I was responsible for her behavior and for her future. I asked myself if all that time I thought I was working so hard to help her had made any difference at all. I wondered if I had really done anything at all besides worry. Some of these were questions I was not sure I wanted to know the answers to.
There were a few things I did know. I was pretty sure I’d never be a mother, but I also knew what it was to be an aunt and a sister, and that meant a great deal to me. I loved watching my sister and her husband succeed at this important task. I was also beginning to realize that our lives are our own to shape and heal as well as we are able. If we are lucky, we have people we love and call family. As for my siblings, I was learning to hope that I could have adult relationships with each of them now that we lived closer. And I had decided to try to let go of my expectations about what those relationships should be like. I’d decided to just see what would happen. As for all those things that remained mysterious and unknown, I could only hope that I would be paying attention if the answers ever revealed themselves.
That night, I lay in bed, not sleeping in my quiet house. Outside I could hear the eternal wind of the Columbia River Gorge rushing over the peak of the roof and squealing around the corner eaves. I closed my eyes and listened to the whistling dark. And then I was falling toward sleep, holding the two of them, Margaret and Tony, in my mind’s eye: Here is Margaret, rushing through the dark hallway in her flannel nightgown like the wind itself, gripping a tattered record cover in one hand and scolding herself in a whisper. And here is Tony, muttering in his sleep, clutching his tattered baby blanket to his chest.
I saw them and I saw the truth. We hold so tightly to what we treasure, not knowing that grasping what is precious to us only makes it fall away faster, not realizing that if we would loosen our hold, the objects of our affections would become lighter than the air we breathe, more magical than our dreams, more constant than sleep. And in that we can find rest.
9.
what’s next, margaret?
If you cannot participate in sports or games with grace and good temper, you should not participate at all. Cursing your luck, excusing, complaining and protesting against unfairness won’t get you anywhere.
—On Being a Good Sport, EMILY POST’S ETIQUETTE
ON A PERFECT June morning I stood in the sunlight in my front yard, hose in hand, watering the berm I’d recently planted on the west side of my lawn. Since I’d moved to Oregon, gardening had given me a sense of pleasure I never knew was possible. How satisfying to plan, to clear a space, and to plant small, delicate seedlings. To begin. What a surprise to watch these small green shoots grow and blossom, even thrive. I was happy I hadn’t give up on gardening after my first attempt, which amounted to nothing short of seedling slaughter. I was living in New Mexico at the time, and it had never occurred to me that soil and climate had much to do with the mass destruction that had followed my first attempts. I’d always thought it was me.
I’d been thinking about beginnings a lot. Not so much first attempts as much as second tries and second chances. I’d never been much good at sticking with something unless it was easy at first. I was used to things coming easily—academics, sports, music—or not at all. Now here I was in my fourth decade starting all over with all kinds of things—activities and work and relationships—inconceivable as that might have seemed just a few years ago.
I was thinking about all of this as I moved my hose across the berm, spraying across the hopeful faces of blue fescue, bright yarrow, thready Karl Foerster grass, lavender. I was cheered, inexplicably, by the wind stirring the diminutive branches of the miniature tabletop pine I had planted for Brendan. I had spent hours clearing the weeds from this spot, working the soil, choosing the plants, plotting the layout, laying weed cloth, shoveling mulch. And all of a sudden, there it was, just like I pictured it would be. How satisfying and how unusual.
To date, my life had not been as tidy as this little plot of land. I had grown up with the dynamics of autism, so I was used to surprises, but I was unaccustomed to the happy ending. I was hardwired for the quirky finale, the crisis, and the climax of the unforeseen and the unmanageable. Even though I hadn’t lived with my sister for almost twenty years, when it came to Margaret, I always expected the worst. That gloomy outlook had somehow bled over into my daily life years ago, giving me an incredible imagination for disaster. First out of habit and then out of talent, I’d spent a lot of time imagining things going terribly wrong, things that have never actually happened: car accidents, fires, fistfights, general crime and mayhem. Every time Brendan was five minutes late, I was sure the state patrol was pulling his car out of the icy slough. When the cat wouldn’t come in at night, it was a rabid raccoon that got her. When the plane hit a patch of turbulence, it was all I could do not to clutch the hand of the stranger sitting next to me and tell her about the things I hold dearest in this life.
I’d been trying to give up this habit. It just wasn’t very restful. Plus, the rational side of me knew that there really are people who live in crisis day in and day out and that I should count my blessings that I was no longer one of them.
As I watered my colorful garden, I thought about a pending trip home to see my sister and admitted to myself how nervous I was about the things I couldn’t predict. I’d put this trip off month after month without a good reason. But I was pretty sure it was mostly because I didn’t know what would happen when I got there. I knew what might happen: I could drive three hundred miles to her house just to have her slam the door in my face. This hadn’t happened for a long time, but it was still a very real possibility.
IT HAD BEEN more than six months since I had last seen Margaret and gone hiking with her. At first the winter kept me away; icy roads climbing out of the Columbia River Gorge and up into the desert plains of eastern Washington were too much for my two-wheel drive and my nerves. But the snow had melted a long time ago, and now what was keeping me was just the uncertainty. Six months is a long time to go without seeing someone, and yet with Margaret, it might seem the same as six days or six years. I didn’t know what she thought about time. For her, five minutes could seem like an eternity when she had to wait. And yet she might greet me after several months as if she had just seen me the day before. Because her communication skills were so limited, we didn’t correspond, at least not in a normal way. I’d send a postcard every now and then. Sometimes I would call and talk to a staff member about how she was doing. At the end
of our conversation they’d hand the phone to Margaret, who usually said hello before hanging up on me. As a result, there were large drifts of silence between our visits.
But it wasn’t like we would have months of catching up to do, either. Margaret didn’t talk much, so I anticipated that when I did see her there would be a lot of quiet, maybe some sudden singing or loud commentary. Or whispering behind her cupped hand. If I wanted to know how she had been, I had to ask her caregivers, the people who were paid to make sure she ate three meals a day, took a shower, brushed her teeth, got to swimming practice, and left the locker room with her swimsuit turned around the right way. These people were almost complete strangers to me, and yet they inhabited my sister’s daily life and created the stability she needed just as my family used to.
If I asked Margaret how she’d been, she wouldn’t be able to tell me. She wouldn’t be able to ask me, either. I doubted she even knew what any of that meant in the context that we normally ask each other these kinds of questions: Tell me what you’ve been thinking and feeling. How are your old wounds, and do you have any new ones? What about your joys? So we wouldn’t have any long conversation like some sisters might. We would just have the day—a car ride, a hike, lunch, the drive home—things we both enjoy. We’d just have those few hours to spend together—mostly in silence—and maybe that was enough.
At the time, I had been very conscious of her absence in my life. I didn’t miss the bad times, the years of family tension and violent outbursts—years that I had spent feeling somehow simultaneously responsible and resentful, ineffective and unappreciated. Countless times Margaret had worked herself into a rage or a panic over some nameless thing that she couldn’t communicate. And there was absolutely nothing to be done but wait it out, like one waits for a cyclone to pass. But we struggled against it anyway, trying to calm her down; trying to get her to stop throwing herself on the floor, against walls; trying to tame the screaming with our own quiet words, our own anger and tears of impotence. Those years were like battle, and they cast a shadow far into our twenties and thirties.
Walking on the beach in Mexico at Christmas, my brother Mike had told me about the emotional turbulence a friend of his was going through. “Yes,” I said. “I’ve been depressed before, too. It was really, really hard.” Mike nodded. “But it only lasted about twenty years,” I said. And then we both just howled. Perhaps it had taken this long for the quiet to take hold, for the dust to settle, for me to feel Margaret’s absence in my life.
I missed my sister. I felt the lack of her very physical presence. I missed her familiar bulk, the feel of her thin hand in mine when she was happy, the sound of her joyful laugh, her real, beautiful smile, not the fake one she saved for the camera. If I closed my eyes, I saw Margaret in a red-and-white-striped shirt and blue jeans with an elastic waistband, white tennis shoes—her teenage uniform. She had a bob and bangs, like me, our eternal haircut. I breathed in this image and smelled spaghetti noodles, one of her favorite foods. She often spilled food on herself from eating too quickly. This wasn’t an unpleasant smell, although I was often embarrassed for her. But I got used to the stains on the front of her shirts, got used to helping my mother pick out “Margaret-colored clothes” that didn’t show the food stains as prominently. And later, when I was in graduate school and my friend Anne gestured to her own large breasts and referred to them as “the crumb shelf,” I thought of my well-endowed sister and laughed. Maybe Margaret wasn’t so strange after all.
When we were children, Margaret smelled like flowers, moist and powdered after her nighttime bath. She’d swoop around the bedroom in her long cotton nightgown and bare feet. She’d race laughing up the stairs, the family dog yipping with excitement and nipping at her hem, as she shouted, “I be the winner!” She’d collapse in hilarity on her twin bed in the room we shared. When I was in college and we were in our twenties, she was still doing this. These times were better than the bad times—the times when her wailing could last for hours, drawing the neighbors and even the police to our door.
I could remember the feel of her skinny arms wrapped around me as she crushed me into her big, soft belly, cackling at some joke of her own making. Margaret would hug me so hard she’d pull me off of my feet. She would also reach around and yank me up by the neck as if I were weightless. But Margaret hadn’t hugged me like that in years. Nor had she spanked me, pinched me, whacked me on top of the head, or spit on me like she’d used to. When I was home, I no longer walked around the kitchen with my ass to the wall, forever on defense against some silent but inevitable attack. When she was being her noisy self, our father called her Thunderfoot, and yet when she wanted to sneak up on one of us, she had the stealth of a Jedi Knight. But not anymore.
The minutes and hours and days we spent trying to get her to behave, to stop doing the things we didn’t want her to do, were piled up in a closet of our past, gathering dust like her old records in my parents’ basement. It was all meaningless now, though at the time it seemed like scolding her and trying to redirect her behavior was all we did. Trying to be reasonable myself, I might say, “Please don’t hit me, Margaret. That hurts when you do that, and I know you have good manners.” Or in a less composed moment, I might clutch my head and say something like, “God DAMN it, Margaret! Don’t fucking hit me!” She’d just laugh and parrot back, “You don’t hit me! Ha! Ha! Ha!” and then she’d raise her hand to pretend like she was going to do it again and then laugh some more and run away.
Sometimes she tried to behave. I could tell she was trying. And we really tried to think through how to help her understand what we were asking of her. As a teenager, Mike once sat at the table calmly explaining to Margaret why it just isn’t nice to spit on people, especially to spit your dinner on them when they are eating their dinner. The spitting phase was just bugging the shit out of everybody, and he was trying to make her understand. Margaret sat there and appeared to be listening to our brother like a totally reasonable person. She put on a serious face, said “Okay, Mike,” and nodded as though she agreed with him completely that it was a really good idea if she used her polite table manners from now on. Then she took a big gulp of her soda, held it in her cheeks, and erupted in laughter, showering Mike with sugary drink. Mike just closed his eyes, wiped his face with his T-shirt, and left the table without a word. Once during the spitting phase he and our brother Larry tried another tactic—spraying their own drinks back in her face. She thought that was just hilarious. The three of them sat there at the kitchen table, our own Trevi Fountain, spraying soda and juice high in the air and across the room and hooting with laughter.
That’s pretty much how we handled things for thirty years or so. Try this, then that, then something else. This method of instruction was exhausting for us kids and often seemed more than useless. Margaret appeared to stop doing things only when she felt like it. Just when we gave up trying to make her stop, she’d drop some behavior that we’d been trying to break her of for months or years. Like pouring the milk down the sink. Like spitting down the front of her shirt on purpose and wiping it up with her finger. Like turning her music up really loud at certain points on the record so that we all shouted, “Turn it down, Margaret!” Like talking to herself. Like spanking the houseguests.
Why would I miss this kind of behavior? Because it was a part of me, and because it was all I had. This was how I knew my sister—as this gigantic mass of predictably destructive behavior; irrational, unpredictable motivation; and enormous affection. Growing up around Margaret, I always felt like things were about to spin out of control, and I never quite knew how to handle whatever happened next, but I was used to it. I had a recurring dream when we were younger: I was driving in a car down a treacherous, twisting road in the dark. It was icy, and I wanted to slow down, but when I pushed the brakes, nothing happened. Then I realized I was sitting on the passenger side.
I didn’t see my sister much anymore. There’s the old saying, you don’t know what you’ve got ’til it
s gone. It wasn’t that simple. It was more like you hate Jell-O, and then they take away the Jell-O and you still don’t like Jell-O, but you miss having dessert, so it turns out that Jell-O was better than no dessert at all. The loss I felt was partly just life taking its course. As an adult, I’d moved and traveled as I had the liberty and facility to do so. My sister hadn’t done those things, because she couldn’t. She had stayed in the same place, and we only saw each other when I returned to my childhood home.
There was another reason I’d seen her less; a couple of summers before, I had told my parents I would rather see Margaret alone when I came to visit instead of seeing her at the family lake cabin. Translation: don’t invite Margaret. My sister’s behavior at family gatherings had become unbearable to me. Our family’s response to her behavior had become even more unbearable. As my visits grew ever briefer in adulthood, they remained violently colored with dramatic outbursts from Margaret and consequential fractionalization of the family as we failed, collectively and separately, to cope. And unlike when we were children, there was no time in between these intense sessions to enjoy the good stuff. I’d return to wherever I was living at the time completely drained. I’d get migraines on the plane, pulled muscles in my neck and back. I’d go back to work feeling exhausted, feeling like I hadn’t really been on vacation. I don’t know how Margaret felt, but I’d be willing to bet that she was worn out, too.
So she wasn’t invited. The rest of us gathered at the cabin, and these visits were quieter and calmer than we’d ever experienced before as a family. And when I saw Margaret separately on my visits home, she was like a person transformed. I’d pick her up at her house for lunch or coffee, and she was quiet, watchful. She always seemed glad to see me. We had what you might call “normal” times together. And yet I felt, somehow, that I had lost something. We never discussed this issue as a family. But then we were never a family that was prone to discuss much. We were better at silent brooding or sudden fits of temper that went unresolved. I’m pretty sure, though, that my parents did not agree with me that things were better this way. Because that’s what I kept telling myself: It was better this way, to draw boundaries, for her and for me, to try to act like the adult I wanted to be instead of the child I had been. I wanted to change the parameters of our relationship as I had with our other grown siblings, albeit in a more a mutual way.
How to Be a Sister Page 14
