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

didn’t matter for the moment as we breached all that divided us in a few moments of shared quiet with clasped hands.

We walked along like this, not speaking, and the ground leveled out. With the perceived danger past, Margaret suddenly started to sing, and she swung both our hands to the tempo. I recognized it as her version of a Winnie the Pooh song from our childhood record collection.

“Winga the Pooh. Winga the Pooh. Da da da da da da all something fluff. He’s Winga the Pooh. Winga the Pooh. Silly silly silly old bear!” She ended with “We’re a cer-eee-al fam-i-ly!”

I stood there watching her beautiful, triumphant smile. She threw her head back, laughing loud and long. Then she dropped my hand, got in the car, and slammed the door as hard as she could.

5.

what autism is

If we have a disabled person in . . . our own family, we make every effort to learn all that we can about his or her problem to seek professional advice and to make the family as normal as possible.

 

—On Disability, EMILY POST’S ETIQUETTE

SUMMER TURNED TO fall. I found myself sitting in the dark on a Wednesday afternoon in Portland’s historic Cinema 21, a wonderful old art deco movie house. Footlights cast a warm glow onto the columns along the walls, making me forget about the cold outside, the bite of autumn in the air. I was early, as always. I was sitting exactly in the middle seat of the middle row of the three hundred seats, which is just where I liked to be. And which is another reason I like to go to movies by myself—so that I can sit where I please and in silence. I felt an old seat spring poking against my back, and as my eyes adjusted to the darkness, the heavy drape of curtain over the stage glowed a deep red.

The show was about to start. It was called Autism—The Musical. When I bought my ticket from the quirky guy at the ticket booth, I asked if he had seen the show, and he said not yet, but that he was sure I would enjoy it. When he said that, I stared at him like he had delivered some kind of message from the other side. I think I made him nervous. After all, how would he know that I was on a quest?

I wandered into the huge, dark theater and found it completely and perfectly empty. For a moment, I felt like all this was happening just for me. As if when an invisible hand drew back the curtain, I would finally find the answers to all my questions about autism, about my sister, about our family. But that particular show is a musical called Autism—Our Life. That wasn’t playing at the Cinema 21. It just plays in my head all the time.

As for my quest, I had gone to the theater looking for answers. I’d begun asking questions in my head and on paper. Mostly about Margaret. Since my last couple of trips home to see her, she’d been on my mind. We’d been on my mind, our relationship, I mean, and what exactly I was supposed to do next. It wasn’t like my phone was ringing off the hook. Margaret hadn’t called me. She doesn’t really call anybody. Not to talk, anyway. If she has plans with my parents, like Easter dinner, for example, she’ll call compulsively for days before. And when they answer, all she’ll say is “You’re going to have Easter dinner, please!” and when one of them says yes, she’ll hang up on them and call back five minutes later with the same question.

So I couldn’t very well expect her to make the next move. The ball was, eternally, in my court. But I didn’t know what I even wanted or expected. And I was frustrated by the same sense of helplessness that I’d felt for years. I mean, after all this time, shouldn’t I at least understand autism? I had lived and breathed it for the first twenty years of my life. It had haunted me for the last sixteen. I had worked alongside my parents, Margaret’s teachers, and student volunteers in helping her learn, helping her cope with our alien world. If I didn’t know this, then what did I know?

But I found myself with more questions than answers, so I started reading. At first I was almost embarrassed. I felt like Melville’s Ahab cracking a copy of The Beginner’s Guide to Fishing, but I persevered. I read books by parents, doctors, and therapists. I read the life stories of Temple Grandin, Kamran Nazeer, and Donna Williams, people with autism who were able to write from the other side. As the publication dates on the books became more recent, the parent authors were suddenly closer to me in age than they were to my parents. But their basic story stayed the same. It was a story of lack—a lack of information, a lack of assistance from the medical world, a lack of support from family and friends, a lack of cooperation from the school system. It was my parents’ story all over again.

But here and there, I saw a glimmer of what I was looking for: siblings. And my own questions clarified. What did brothers and sisters do? How did they cope? What were their responsibilities, ultimately? What were mine? Then I saw the advertisement for this film. And even though it was playing an hour away from my house in the middle of a weekday, I knew I had to go.

I sat and watched the documentary, my heart full of emotion. If it were a nice feeling, I’d say my heart swelled. But it was more like a bulging, like it might kill me. It was a terrible feeling. Part empathy, part schadenfreude. The plot revolved around a woman, Elaine, who had decided to put