How to Be a Sister Eileen Garvin (online e reader .txt) 📖

definitive or concrete to me, and none of it seems to describe my sister, the living, breathing person. I only have my experience to go on. And as I grow older, it becomes more important for me to try to explain it to myself.

Autism has long, graceful fingers, thin tapers always moving, lightly tapping the table, the dashboard, a knee, stacking and restacking themselves, braiding and unbraiding, calming my sister as she acts as her own metronome, keeping time to the march in her head that nobody else can hear. She cuts her nails short, ever shorter, sometimes to the point of drawing blood, because she can’t stand the way they feel when they grow past the smooth tips of her fingers. Clip clip clip. She uses the same nail clippers to trim the fraying ends of her shoelaces, which only makes them unravel further until she screams in frustration.

Autism is Margaret’s lovely hands twisted up in fury, clenched into fists, and pounding the walls, the floor, the windows, in a wordless, roaring rage that takes her away from us to a place she can’t see anyone or take comfort from those around her. Hands smashing glass, ripping the door off its hinges, punching a hole in the wall. Scabs and scars on her small wrists from biting, smashing, scratching.

Autism sounds like a pair of graceful, slender feet brushing back and forth against each other under the sheets in the dark, not sleeping. Wide awake in the middle of the night, autism is a peal of laughter inspired by some incommunicable joke. It sounds like a scolding whisper in the darkness as my sister rushes back up the stairs in her long flannel nightgown returning from her compulsive journey to the record cabinet to check for a particular record album cover once, twice, again. It is my sister’s voice, perfectly parroting our mother’s gentle scolding: “Now, you go to bed!” the same cadence every time. “Now, you go to bed.” One-two-three-and-four. “Now, you get in the car!” “Line up for gym!”

Autism tastes like blood in my three-year-old mouth when I bit Margaret’s arm to try to make her stop screaming, and then I blamed it on the dog. I’m a liar, a bad liar, and I hate myself. It tastes like the metallic rage in my nose and throat when I caught our neighbor taunting my sister, trying to make her eat dog shit. It’s the ice water coursing through my veins when I saw the two mean boys from down the street trying to make her take her clothes off in the front yard. I’m frozen. I’m furious. I’m helpless. I’m enraged.

Autism feels like everyone in church is staring, asking, Why can’t you make her stop laughing? What’s wrong with her anyway? What’s wrong with your family? What’s wrong with you?

Autism. It’s got more than three syllables. It’s got miles in it, years in it. It’s a road that cut through my sister’s life and, consequently, through mine. It drove over our family and changed everything we might have been. I was just weeks away from being born on the day that all the accumulated clinical testing and observation data was handed down as a verdict. Autism. But it was there before I was, so who really knows what my life would have been like without it? It’s like living in a river valley one hundred years after the big flood and trying to understand what life would have been like if its trajectory had taken the destructive waters a few miles farther north.

Autism has been with us for four decades now, and I don’t know what Margaret is like without it. I haven’t been able to imagine what she would be like if she weren’t burdened with a disorder that makes it so difficult for her to relate to other people. When I was a child I had a fantasy about her recovery. I’d wake up one day and look over to her side of the room from my matching twin bed. I dreamed she’d be sitting there, waiting for me to open my eyes, and she’d be normal, whatever that means. “Hi, Eileen!” she’d say. “I was just kidding around.” And then I’d be normal, too. I loved this fantasy. I tried really hard to believe that this could happen, lying there some Saturday mornings and peeking at her through my eyelashes. But I couldn’t ever conjure what things would be like after that moment.

I’ve never known Margaret without the distinguishing characteristics that come with her autism, but I’m struggling to understand her apart from it. While the disorder is inarguably the single most defining factor of my sister’s personality and her life so far, I’d like to be able to separate the two. I want to believe I can understand the difference. It’s difficult, because I met them both at the same time.

During our childhood, autism was never mentioned without some connection to my sister, and rarely was Margaret mentioned without reference to her autism. But now, as an adult, I can see her struggle around it, trying to reach the surface of the quagmire that keeps her from communicating clearly, from laughing at the right time, from explaining the complicated feelings behind her tears as she stands, facing me, crying in a mute and terrible sorrow.

Sometimes it seems possible to find a bridge between our worlds and to meet each other in the middle. When the car pulls up at the curb, my sister throws off her seat belt and jumps out of the passenger seat, crying, “Hello, Eileen!” Her face lights up with happiness and recognition. The sun catches her brown hair, turning it red. Here is my sister, she is saying to herself. I watch her cross the lawn, a joyful, bouncing rush that might turn into unease in a matter of minutes. But for now her face shines with happiness, the sun touches her brightly striped shirt