How to Be a Sister by Eileen Garvin (icecream ebook reader .TXT) 📗

of choices.” “I can’t. I don’t,” she wrote back. “Nothing changes.” She stopped writing. Her story kept me awake at night. It made me think about how I used to believe I was supposed to take care of Margaret when we were older, an idea that made me feel like I couldn’t breathe. It was only now becoming clear to me that that scenario would be unlikely, and I was grateful for this, because I knew how unhappy it would make me, and I suspected that Margaret would not like it any better.

So, what, then, were my answers? What was my truth? I was not trapped like that woman was. But I was not untrapped. I had some kind of obligation to my sister, although I wasn’t quite sure what it was. Margaret had a home and family and people who cared for her. But it wasn’t perfect, either. It didn’t make a good newspaper story, like the kind of newspaper feature I seemed to read once a year about how some kid with autism was doing great in school, so great, in fact, that he was in the “regular” classroom and was even making friends with his “normal” peers. And how these normal kids were sensitive, compassionate children whose teachers said they were better kids for having quirky little so-and-so in their classroom.

I couldn’t read those stories anymore. They made me angry, because they usually focused on attractive, high-functioning children. Kids with autism who scream for hours and throw themselves down on the floor over and over don’t interview well. Neither do the ones who grind their teeth, spit on people, bite themselves, and wet their pants right after you take them to the bathroom, like the kids I worked with when I volunteered in Margaret’s classroom during high school. But these are the realities for so many autistic children—daily, difficult realities for them, for their parents, and for their siblings.

Here was another not-so-good story: the forty-year-old autistic woman who kept getting fired for pinching people and screaming at work. Or, on the flip side, a forty-year-old woman who couldn’t find a job, because there didn’t seem to be any companies that were big-hearted enough to hire someone who needed a lot of support at work so that she wouldn’t pinch people who talked too much or go to pieces when the paper shredder crapped out. This was my sister’s current hard reality.

In the grand scheme, I knew Margaret had a difficult life. But I also knew she had a good life. She had kind people taking care of her, and she had dedicated parents. She had a home of her own, and she had friends. She was a Special Olympian and a medal winner, too, by God. However, none of this would have been possible without years of effort from my family and her teachers, or without the daily attention and dedication of the staff members at her house. And none of it came without a cost. I knew that the sacrifices my family made—that every family makes—were incalculable.

I read more books about autism, and I wrote. I started to understand how early in my life Margaret’s autism had changed me. She and I were two of five kids, and even though the other three were closer to her in age, it was me who turned around to wait for her when the rest of them ran toward the playground. While our siblings sprinted for the swings, Margaret sat on the picnic blanket, staring down at what seemed like nothing, not wanting to go with us, not even seeming to notice that we were there. I stood there on the grass between her and the others, not knowing if I should go forward or back.

Now I had begun to untangle the threads of my own life from what I remembered of our dual one. I wanted to wind them onto a new loom in my attempt to make sense of who I was and how autism had shaped me. I also wanted to see Margaret’s life for what it was—separate, complete, whole. Autism was a red hammer, a blue hairbrush. It was rage and tears that somehow left room for joy. It was many things, but one thing was certain—autism was never going away, at least not from our lives.

At the end of that fall, I understood that the story didn’t have an ending yet. Autism was still taking my sister and me on a journey. It was those miles and years and mountains that we had traveled—Margaret because she didn’t have a choice, and me because I was choosing to try to know her. I began then to understand that I was choosing something in a way I’d never been able to as a child. I knew we both had a long way to go, but nobody gets out of here alive anyway. I didn’t know what I thought I had to offer her exactly, as a sibling. I was not the most patient person in the world, and not always as kind as I would like to be. I was no expert on autism or on what Margaret needed to feel more at ease in the world. But I was family.

I remembered a story my grandmother had told me. When I was three years old and too young to remember, I came back to the picnic blanket and took my sister by the hand. “Come on, honey,” I said. “Let’s go swing. It’ll be fun.”

That was all I had to go on, and it had to be enough.

6.

the sheep is between the table and the hamburger

It is not essential to have a special gift of cleverness to be someone with whom others are delighted to talk. An ability to express interest in another person and to express your own thoughts and feelings clearly and simply is sufficient for ordinary conversation.

 

—On Expression, EMILY POST’S ETIQUETTE

“WHY DON’T YOU