Grumbling to herself, she wrenches the taps open and turns a quick heel, then comes stomping right back at some admonishment from our mother calling from the other room, where she is busy with the boys, to make sure the water isn’t too hot for the little ones. And don’t forget to turn it off. More grumbling. More stomping. The door slams and she’s gone.
Steam rises and clouds the mirror behind us. I’m grateful for the warming air. I move toward the tub, clamber up. But it’s a high climb for short legs, and for a moment I hang stuck, high-centered on the cold porcelain. Then I reach with one toe, tip, and I’m in. You climb right over the side. You are tall and gangly, like a monkey. I sit in the front, closest to the spigot. Wonderful hot water. I hold my hands out under the rushing stream, small palms up, a prayer of thanks. You sit in the back because I can make you. Even though you are older, you do it because I tell you to. Just like later, when I make you get out and sit on the side of the tub so that I can lie down and let my hair stream out like Ann does. When we three bathe together, she makes us get out of the water and wait shivering in the cold air so that she can stretch out in there. Her golden hair looks like seaweed. She’s a mermaid. She closes her eyes, and I think she looks like Sleeping Beauty. Then her eyes snap open. “Stop touching me!” she says, even though we aren’t touching her. “Well, stop looking at me, then!”
You never want to lie down in there. At least you never say you do. You never say anything to me. Not a word.
I tell you to get back in and you do. We pass a bar of Jergens soap back and forth; we share a worn washcloth, like we always do, you and me. We are the youngest girls, two of the five kids, clumped together in this nighttime ritual as in so many other things. But this night is different from the others, because at some moment during this bath it dawns on me that something is wrong with you, that you are different from the rest of us. Because you are pretty much a big girl, like Ann. But you can’t do anything, like me. You are tall enough to reach the faucets, and you are probably strong enough to turn them on, but you don’t know how. Or maybe you know how, but I have never seen you try. I don’t question any of this or even judge it. I simply acknowledge it. You are different.
The next thought follows so closely behind, right on top of the first, that it’s like the same thing: Because you are different, I’m different, too. Somehow my small brain makes this leap and it stays with me, always. My sister is different because she is autistic, so I am different, too.
THEY GAVE YOU the label “autistic” when you were three years old. I was still in our mother’s belly when she drove you to the University of Washington in Seattle for weeks of tests. Was that why I came early, trying to claim what I could of our crowded childhood? Soon you were in intensive speech therapy, ferried to and from Eastern Washington University by our mother five days a week for two years. I waited at home for both of you with our grandmother.
What else do I remember about this time? Not much. The smell of soap on our grandmother’s neck when she held me, coffee on her breath. The diaper pins she wore like a badge on her sweatshirt over her heart. Later, when we are older, she tells me I would try to draw you in, saying, “Come on, honey.” I’d take your hand and bring you into whatever game the rest of us were playing. But mostly I can’t untangle you from the whole unit that we were before we were in school. We were all together, we five. You only stood out from the rest of us when you screamed and screamed and wouldn’t stop. Or when you wandered off on your own and had to be looked for. The panic in our mother’s voice when she called your name into the big, dark woods or down an empty, darkening street made me afraid.
But then we started school and the secret was out. You were my weird big sister. My first and last childhood birthday party was a painful lesson in how others would see you. The girls from my second-grade class trooped into our kitchen for the party, which consisted of a homemade cake prepared by Mom and streamers and balloons tied to the light hanging over the table. Mom hadn’t planned any games like the other mothers always did. Perhaps she didn’t think of it or didn’t have the time. Whatever the case, there was nothing to distract my classmates from you—sitting at the table all by yourself, staring at nothing. Most of them didn’t know you, because you went to a special education class at a public school. The rest of us went to the Catholic school down the street, and my classmates had seen our brothers and Ann. But here you were, the big birthday surprise.
You didn’t look up at any of them as Mom urged them to sit down. Nobody moved. I was used to your staring silence, but the looks on their faces shocked me. They were afraid of you. No one wanted to sit next to you. Not even tall, awkward Daria, who’d always earned a certain tenderness from me because she reminded me of you.
I felt a burning in my chest. A mixture of shame, anger, and guilt. I fled the kitchen and started trying to organize a last-minute treasure hunt. I had to make my party better so that they would stop looking at you like that. In our dark and cluttered basement, I collected a pile of small toys, thinking I could hide them around the house and then put a list of clues together while everyone ate cake. I could do it if I hurried. Tiffany Greco had had a treasure hunt like that at her party the previous month. It was all I could think of. But then Mike saw what I was doing, and we got into a fight over a Big Bird finger puppet, his favorite. He kicked me in the stomach, and I spent the rest of the afternoon locked in the bathroom.
Did you notice any of this? Were you glad when everyone went home so you could go back to your records? Was it upsetting to you to have so many strangers in your house?
At school that year we learned about Lourdes Cathedral in France. The holy water there was said to work miracles, cure afflictions. The blind could see, the lame could walk. It was a miracle blessing from Jesus’s mother, Mary. I started saving my money, thinking that if I could go there and bring some water back, you could be healed.
Our grandmother’s smile was sad when she told me it wouldn’t work. “Keep praying for your sister instead,” she said. Bottled magic seemed like a much better idea, but I didn’t make it to France for twenty years. I prayed every night that you would wake up one day and be normal. Ta-da! “I was just kidding around,” you’d say.
Grade school was a time of plaid. Four of us marched through the seasons in our Catholic school uniforms and knee socks, our red cardigans stiff at the cuff from nose wiping. The year was a cycle of feast days, report cards, Christmas break. You wore regular clothes and took the short yellow bus from the corner. Mom waited with you every morning, holding your hand until the bus came and you climbed those stairs.
When I went to your classroom, it looked like so much more fun than mine—little tables and chairs instead of desks, colorful toys. One of your classmates, an older boy, picked me up and held me in the air, laughing. He seemed like a giant, and when he returned me to earth, I stood looking up at his laughing face. There was playground equipment at your school. The smell of the dark wood and the feel of the coarse monkey bars under my hands made me envious. We had tetherball, four square, kick ball, that was it. It never occurred to me that you couldn’t run out there and play every day at recess like I would have.
In 1975 we both got what our pediatrician said was Yersinia, or bubonic plague, along with hundreds of other children in our town. My crowded hospital room was just across the hall from yours, but I felt homesick for you, because I couldn’t see you. I woke to find you sitting on the floor next to my bed, knees pulled up under your nightgown and your ankles crossed, staring at the floor. Did you come to find me? Later when I woke up, you were gone. I was so lonely, but the mean nurse wouldn’t come, and I pooped my pants. The nice nurse came later and cleaned me up, but I just wanted to be at home with you and Ann in our crowded, messy room.
SUMMER WAS A bright stretch in our year, a patch of sunshine we greeted in bare feet on the wooded lakeshore. From the ceremonious opening in the spring until Labor Day, we were at the lake, and the house filled up with our laughter, trac
es of the beach brought in on our feet, the sound of the water at night. The days were full of our comings and goings, adventures in the woods, jumping off the cedar dock into cool sheets of water, lunch in wet bathing suits and towels, endless reading in the long afternoons, large dinners with a dozen or more people crowded around the long table.
You would blend in through all of this commotion, unless something upset you. Then your fire-engine wailing could clear the house. Lucky for us we didn’t have many neighbors out there, so no one called the police.
But there was also a time that the lake house was quiet. The stillness was a kind of reprieve from the human locomotion that was the usual summer mix of friends and family. The days needed no names, because they were all long and sunny, but perhaps it was a Thursday morning, like this one. I’d wake alone in my tree-shadowed room, moved from sleep by the sound of a boat puttering by, the furious chatter of a squirrel in the woods behind the house, or the gentle silence of the house empty of motion. I’d lie in my large hundred-year-old bed, breathing an ancient, pleasant mildew, watching the sunshine dapple the painted wood walls and catch the vibrant colors of the tattered wool Oriental rug. Like everything else left in this house by the previous owners, the hand-painted china, the furniture and art, it had once been grand, but was now worn by time and our rough-playing family of seven. We were living our present among the tattered remnants of someone else’s past.
I’d get up in my bare feet and nightgown in my room at the head of the hallway, the other doors along the hall standing closed. I might hear our father snoring in the master bedroom at the other end. I was so quiet passing your room. I could see you there, not moving, so still. It was a miracle. As soon as you woke up, you were all noise and motion. Running feet, slamming doors, snapping on the stereo, and launching one album after another, all day, until darkness fell and they made you go to bed. Roger Whittaker. Victory at Sea. The Osmonds. Those were the good days.
On the bad days there was your screaming, your inconsolable anger and fear. The house was electric with collective anxiety, and there was nothing I could do. Best to let you sleep as long as possible.
Down the turning staircase, past the French doors on the landing, into the large open room on the first floor. I’d walk out onto the sun-drenched steps; the house, facing northeast, always caught the morning sun. A soft breeze blowing inland in my face. Thursday morning. No boats, no people, no Jet Skis, which came later, no tour ferries. Me, a cat, the breeze, the lake, the birds, and you not here—sleeping in.
We have a picture of you taken in 1974, when you were seven. You had climbed up on a rock-covered barge at the end of the beach and sat high up on the seat of the tractor, your hands tucked into your life jacket. Your hair is a mess, and you’ve picked a scab on your face, so it is bloody. You are looking at the camera but not seeing the person holding it. That picture always made me feel so lonely. I didn’t understand why you wanted to sit over there by yourself on the cold steel seat of the tractor. I didn’t understand what was wrong with you. I’d never known you to be any other way, so I never questioned it. You were a strange child, but you never seemed strange to me. You were just yourself. When our friends came to visit and saw you lying in the middle of the room on your back spinning an orange cushion in the air, it must have looked so bizarre. Spin, spin, spin, and then pop! You’d kick the cushion high, flip it over, and catch it on your slim ankles without missing a beat. You never dropped it. They’d stop and stare. “That’s just Margaret,” I’d say, stepping over you.
What did we do all day, with those gloriously empty summer days? Weekends from April to September, holidays, ten-day stretches all summer long for fifteen years, until the rest of us got jobs and you were left alone with Mom and Dad. But while we had them, there were hundreds of those days. No chores, no school, no lessons, no road, no car. Just books and music and the woods behind the house and the faint trail left by the invisible deer. We sat on the beach, dug in our toes, swam in the cool slippery water. As teenagers we spent hours on the long cedar dock, playing our music, our baby-oil-slathered bodies glistening in the sun. Our mother would call from the porch to ask if we had sunscreen on. Yes, we’d lie.
But where were you? Sometimes with us, hardly ever joining us of your own accord. More often you preferred to be by yourself, playing records. Or Mom would coax you out in the rowboat. In the evenings we played cards, board games, read some more. You listened to your music. We went to bed early. It sounds so uneventful, but even when we were too young to really appreciate it, we cherished that time. I think those hundreds of empty days gave us a space for contemplation and rest that would help us later. Maybe if things had been different, we’d have all been artists and writers and musicians. As it turned out, the quiet at least helped balance out the chaos and the violence in our lives, gave us a well to drop down into when there was too much screaming. Like leaping off the dock and landing at the bottom of the lake, resting easy in the silent, waving seaweed.
I’d like to reclaim one of those days. Just one. Twenty-four hours in total, including not-too-hot languorous daytime hours that stretched long and thin like a blissful cat warming herself on tile steps. I’d like the sun-soaked hours full of onshore breeze, swooping barn swallows, and the smell of pine trees and lilacs. Afternoon twilight, squeaking bats, darkness, and the sound of the waves lapping the shore. Our mother’s voice before we fell asleep saying, “Listen to the water go splash, splash.” I’d give up the nighttime interruptions, the door slamming and the yelling, your laughter and the creak of the bed-springs as you dashed back into your room, Dad erupting in anger, Mom mediating endlessly.
I’d keep this day in a jar on my desk so that I could take it out and remember. Put my hand in and stir it around to feel that way again. Keep it in my pocket and touch it now and again as I walked the streets of my neighborhood in Oregon. Remember the way it felt to be young, unaware, in love with the morning. And waiting for you to wake up.
TELLING LIES CAME early for me. Almost earlier than memory. This untruth: Louie did it. My mother asks who put the teeth marks in your arm. She’s pulled back the flannel sleeve of your nightgown to reveal the curved red circle, clearly the imprint of my three-year-old mouth, but I blame it on the ancient dachshund who sits blinking up at me. I had to make you be quiet. It didn’t work, my teeth in your arm only made you cry harder, but then I was the one in trouble. Later, when the other dog bites me in the face, I figure it is payback.
I always felt like I had to make you be quiet. Why can’t you shut up? There is the rocking and wailing for hours, the screaming and banging. You can’t tell us what you want. Maybe it is a small piece of plastic you’ve treasured for days and dropped somewhere. Maybe your skin hurts, or the noise is bothering you. We’ll never know. And we’ll never be able to do more than wait it out.
At the lake you scream and scream, and none of us can get away, because there is no road and no neighbors and no way to make you stop. Dad is so angry, again. Why can’t you shut up? And I’m angry and afraid and helpless. For a few minutes, I hate you. I imagine how satisfying it would be to slug you in the stomach. I imagine the look on your face after my small balled-up fist punches you there. And then I do it. And you’re stunned, the wind knocked out of you, and when your breath comes back, you cry even harder. Then I hate myself more than I ever hated you.
Later, much later, you come to visit me in Seattle with Mom. We’re at the Coastal Kitchen, and you won’t stop laughing, spraying water across the table in my face. I wanted to bring Mom here, and Mom brought you, and now you are ruining everything. I know how much it will hurt you, my heavy shoe slamming into your delicate shin, before I kick you. And I do it anyway. Now your laughter has turned to wailing. And I am sickened by my own nature. It’s been almost fifteen years, and I can still see you, open-mouthed and sobbing as you clutch your shin. What kind of a sister am I?
You shoved me, pinched me, spanked me, smacked me on top of the head, pulled my hair, gr
abbed my neck, kicked me for decades. A couple of years ago you kneed me in the face when I hunched down next to your chair, trying to calm you down. I fell and hit my head on the tile patio.
But all of that was different coming from you. You couldn’t control yourself. Sometimes you were trying to be funny. Other times you wanted me and everyone else to get the hell away from you as you grappled with some nameless anxiety; the last thing you needed was someone in your face.
The physical struggle leaves an imprint. It’s a violent intimacy that we carry in our history. The pain in my neck, I can feel it now. The red tattoo of my teeth on your arm. Your stomach, my face. Your shin, my heart. I want to heal that history and replace it with a gentler one.
That is the challenge, then, the desire to make whatever future we might have as a family different from the past. Your disorder—autism—brought so much sadness into my life. It took away the sister I could have had and replaced her with you, locked away inside yourself. Sometimes you’d show yourself, waving at me from behind the bars. But mostly it was battle. Autism took away the family we could have had and replaced it with seven struggling individuals alienated from each other by the same enemy. I always thought I just needed to try harder: If I only try harder, I will find Margaret in there somewhere. If I try harder, we will get along and be happy. I’m just not being patient enough, smart enough, diligent enough. I’m borne forward on the false hope that you will get better someday. Somehow there will be a measurable improvement if I just keep trying. Be a better sister. Help your sister. Take care of your sister. You’re not trying hard enough.
Just the other day, you sat on my couch here in Oregon listening to June Carter Cash’s Wildwood CD for the fifth time in a row. You were calm, lightly patting a throw pillow to the beat of the music, head cocked, looking at the ceiling. My dog was asleep with her head on your lap. I looked at you and thought, This is it. This is you, and here I am. This is what we’ve got. And it’s got to be enough, because it’s all there is.
How to Be a Sister Page 19