How to Be a Sister

by Eileen Garvin

  We were so mortified by this outburst that we were, luckily, looking at the floor for the rest of mass and could not see our friends and their parents sitting a couple of pews in front of us, the whole family a quaking mass of shaking shoulders and muffled snorting as they tried to contain their laughter. We’d have been done for. None of them ever forgot this episode, and I’m sure no one who was within earshot ever forgot it, either. Margaret appeared to think about it from time to time, too. While she was still living at home, she’d poke her head in the kitchen door with the non sequitur “You be quiet in church, Mom. That’s GOOD behaving.” Then she would wait for our mother’s affirmation. “Yes, Margaret, that’s good behaving.” And my sister’s head would disappear back into the living room.

  MARGARET’S TALENT FOR voice and memory was alternately hilarious and mortifying when we were younger. But by the time I moved to Oregon, I realized how much things had changed. What was once a source of daily embarrassment and stress for me had softened into a fond recollection. My quiet adult life was empty of the shock and rush of Margaret’s actions. I moved through stores, crowds, and holiday dinners just like anyone else. Nobody stared at me or the people I was with. No one in my cohort was apt to throw herself on the ground kicking and screaming under the clothes racks in Nordstrom’s. Nobody said “Hi, Eileen,” in the middle of the night, as casually as if I were sitting next to her on a park bench at noon instead of trying, desperately, to get some sleep. Nobody bounded naked through the living room when I had friends over, laughing or crying about her brown bra. I could sit at the dinner table for hours if I wanted to, and nobody threw food at me or spit on me or took my plate away before I’d had a chance to finish, insisting that it was time to go.

  But I also found that none of my friends picked me up by the neck in a bear hug, either. Nobody tackled me on the family room floor and rolled around with me, hooting with laughter, telling me, “I’M not your meLON!” When I was home alone, nobody was spinning records to create the soundtrack of my day—Ella Fitzgerald, Simon and Garfunkel, Electric Light Orchestra, Arthur Fiedler’s Pops. Nobody continued to apologize over and over again for the last time they had pinched me by giving me the kindest of hugs, the sweetest pressing of a cheek on mine before reaching out to pinch me again.

  I found that I missed the craziness and color that Margaret brought into my life. As in any life, the good and the bad of the past were long gone, and I had only the memories of that time. And though the past echoed back at me on occasion, it wasn’t always what I wanted to hear.

  THE DAY MARGARET refused to eat lunch with me was my second summer in Oregon, back in the Pacific Northwest. I’d been in more regular contact with her through the staff at her group home, trying to find ways to connect with her. So when I found out that she would be traveling to the coast for a week’s vacation with one of her housemates and a couple of staff members, driving right through my town, I asked Tami if she would be willing to bring Margaret by. She agreed, and they planned to stop for lunch on their way to the coast.

  On the appointed day, I waited, nervous and excited, as the lunch hour came and went. Hours later Tami called to explain that they had missed the turn from I-90 to U.S. 395 and ended up going a different, longer way. We arranged for them to come by on their way home instead.

  A week passed and again I waited by the front door for my sister to appear, half certain they wouldn’t make it this time, either. But suddenly there they were. Margaret was all smiles and enthusiasm when they first arrived. “Hi, Eileen!” she said, opening the car door and sticking a foot out on the pavement before the car had reached a complete stop. She threw off her seat belt, jumped out of the car, and gave me a big hug and a huge smile before she pushed past me and hurried into the house.

  While her housemate and two staff members were still climbing out of the car, stretching, and introducing themselves, Margaret did a speedy self-tour of my house. We followed behind slowly, moving up the sidewalk and into the house, me asking about their drive, asking if they were hungry, them telling me about their three-hour detour on the way to the coast. By the time we’d entered the house, Margaret had retreated to the living room and plunked herself down in a big rocking chair, withdrawing from the rest of us.

  I had set the table before they’d come, but thought better of it right before they arrived and put everything back in the kitchen for a casual buffet. Too much structure made Margaret nervous. The two staff members—Tami and Teri—made sandwiches for themselves and Margaret’s quiet housemate, Ken, but Margaret refused to come to the table. She just kept looking down and shaking her head when they asked if she was hungry. “No!” she said. I knew enough to let her be. I knew what would happen if I tried to get her out of that chair. At least I thought I did. I thought she’d just get upset and start yelling. She might even head for the car and insist on leaving.

  Tami and Teri seemed puzzled. “She was so excited to come here this morning,” said Tami. She told me that Margaret had gotten up, showered, and was ready to go before the sun rose. But I knew better. Margaret was probably not excited to see me as much as she was just anxious to get on with “the plan.” My house was the last stop before home. She probably wanted to get the trip done with in the order it was planned, that’s all. And that’s pretty much the way our entire anxious family behaved on the last day of a vacation. We seemed to forget how much fun we’d had and would think, “Well, crap! Vacation’s almost over! We might was well just go home, goddammit!”

  But I didn’t say anything. I just watched Margaret and listened to Tami and Teri talk about their week at the beach. They told me things my sister never could: dates, times, names, events. They’d rented rooms right by the water in Lincoln City, Oregon, a place we used to go on spring break with our parents. The four of them had spent the week walking along the coast, watching people fly kites, wading in the cold Pacific, and generally lounging.

  “Margaret really liked going for walks,” Tami said.

  “She liked the wind,” said Teri. “She’d say, ‘It’s blowing! ’ You know how she says that?”

  I did. I could see her standing on the beach, smiling into the wind and pointing a long, graceful finger at the sky. That made me smile. I glanced back at Margaret, but she averted her eyes when she saw me looking.

  Margaret’s housemate, Ken, who also has autism, always looks really nervous when I see him. He looked a little scared sitting there at my table. I had never heard him speak, but he has a very kind face. Even today, whenever I say, “Hi, Ken! How are you?” he just looks at me with wide eyes and grimaces, trying to smile. Ken had eaten part of his sandwich and was gulping his root beer. Tami said, “Ken! What did we say about drinking slowly?” She gave him a patient lecture about how he needed to drink slowly or he would make himself sick, remember? Ken, looking very sorry, nodded vigorously, crushed his root beer can in one hand, and belched.

  During this conversation, Margaret got up and hurried into the bathroom like she was late for some really important meeting. She came out while still zipping up her pants, which earned her a gentle reprimand from Tami about why it’s important to pull up your pants before you come out of the bathroom. Then she reminded Margaret to go back and wash her hands, which Margaret did with great urgency.

  I guessed that Tami had said these things to the two of them over and over and over again. When I had lived with Margaret, I had done the same: Cover your mouth when you cough, Margaret. Say, “Please pass the bread,” Margaret. Close your mouth when you chew your food, Margs. Wait your turn. Say, “Excuse me.” Put your clothes on before you open the bathroom door. Don’t push people. It was like having a kid around all the time, a kid who would never learn, and it was endlessly frustrating for me to repeat the same things without any apparent change in her behavior.

  I watched Tami and thought about how I had always imagined this was something I would end up doing—taking care of my sister. When I was in my twenties and people asked me when Brendan and
I would have kids, in my head I was thinking that I needed to keep myself freed up for the time that I would be taking care of Margaret. Even years after Margaret was in a residential setting with professional staff, in the back of my mind I felt like I was supposed to be preparing myself to be her caregiver. Why I thought this, I can’t say. It’s a terrible idea for many reasons, including my personality. Luckily, I’d never been asked to be this person for Margaret. Some parents simply assume that their other kids will step up to the plate and take on this task when the time comes—failing to acknowledge it as an enormous, life-changing burden.

  Our parents had had the foresight and the means to make long-term arrangements for Margaret. They worked very hard to provide her with a stable, sustainable living situation, including a twenty-four-hour staff. Even so, my survivor’s guilt still pricked me every now and again with thoughts of what I should be doing for my sister because my life is so much easier than hers. But as I watched Tami, I was simply grateful that Margaret had such patient and vigilant staff members who were willing to keep offering the same careful advice to her and to give her some freedom by being there to support her.

  We sat at my dining room table, eating our sandwiches and making small talk while Margaret rocked in the chair a few yards away. Then there was a break in our conversation, and I heard my sister say, “Margaret, why don’t you shut up?” She muttered it to herself, looking at the floor. And even though she said it quietly, I heard her perfectly, because it was a true-to-life imitation of my own teenage voice. Although I don’t remember saying this to her, I’m sure I must have said it—and worse—when we were growing up. “Shut the fuck up” comes to mind. And even “Jesus fucking Christ, Margaret, would you fucking shut the fuck up!” in a more eloquent and frustrated mood. Perhaps I said this when she had been screaming for hours and banging her hands against the walls, the doors, the floors. Maybe I said it when she was laughing and goofing off at the dinner table so I couldn’t get a word in edgewise in our already loud family. I can’t remember, but she clearly does.

  Margaret looked at me out of the corner of her eye and said it again, just as clearly. “Why don’t you shut up?” I glanced at Tami and Teri, who were looking at my sister, but didn’t say anything. I wondered if she said this all the time or if it had just popped into her mouth because she was with me. I didn’t know why Margaret said it. I didn’t know if she was irritated with me because I was crashing her vacation or if she was just anxious. Maybe this was just a meaningless phrase that she attributed to me. Maybe she really just wanted me to shut up. Whatever the case, it made me feel like an asshole to hear this sound bite that I’d left in her head after all this time. It was an inversion of the familiar feeling—embarrassment at Margaret’s public outburst—because this time I had no one to blame but myself.

  While the rest of us finished eating, Margaret rocked in the chair and shredded a piece of junk mail. I asked her if she wanted to see my garden, thinking she might want to be in a quieter place. “Yes!” she said and jumped up out of her chair. But as soon as we went outside to look at the garden, she got nervous and wanted to leave. She hurried back into the house and said, very politely, “Do you want to go now, please, Tami.” It wasn’t a question. There was nothing more to be done after that, really. Tami, Teri, and Ken had eaten, and Margaret had made it clear that she wanted to get moving. There was no reason to stay. This, after all, was a family visit.

  My sister brightened immediately when Tami said it was time to go. She jumped up and started bidding me farewell before the others had even left the table. Margaret gave me a big, one-armed hug, pressing her cheek against mine. “G’bye, Eileen! Thanks for the visit! Thanks for the lunch, Eileen!” she said. I knew she must be hungry, since she hadn’t eaten lunch, and I also knew she would probably get a stomachache if she didn’t eat. So I offered her a granola bar for the ride and found myself grateful that she accepted it.

  “Okay, Eileen! G’bye, Eileen! Thank you! Nice seeing you!” Margaret kept saying this and waving to me as we walked together toward the car. I hugged her again and said good-bye to the rest of them after giving Tami directions to the highway. “G’bye, Eileen!” Margaret was still saying as they pulled away from the curb. “Thank you very much for coming!” she yelled out the window. She looked so joyful, never so happy as when she was allowed to leave. But isn’t that how it is sometimes with family? The best part of the visit, when you feel both affection and relief, is when you get to drive away.

  A few days after this visit, I got a card in the mail, clearly dictated by a staff member, because Margaret doesn’t usually write in complete sentences. In Margaret’s large, signature printing, the following message crawled across two pages: “Here is a pichter of you and me. I really liked visiting with you. I liked your house. Love Margaret Garvin.” And then another, “MARGARET GARVIN!!!” with stars around it. Along with this card was a photo that Tami had taken. Margaret is doing her fakey, I’m-in-front-of-the-camera smile, and I’m leaning over her looking worried.

  I taped the picture to the refrigerator and put the card away in a box of letters, grateful that the kind staff had helped Margaret write to me and trying to bury my concern about their spelling skills. I started to write back, and then I thought, What’s the point? I wondered what it meant to her to get a piece of mail from me. Did she know where I was? Did she understand the concept of keeping in touch? These questions depressed me for days, even as I tried to be happy that we’d seen each other instead of dwelling on my mortification at being the Shut Up Sister.

  IN THE WEEKS that passed, I found myself reading more about autism, continuing my quest for information about siblings of autistic adults. One book had a short section on relationships between siblings. In it, a parent commented, “When we explained to our daughter that autistic kids often have trouble responding to other people, I think it was a relief to her. Sometimes I wonder if she didn’t blame herself for their lack of a relationship.” Reading that sentence reminded me that there is a third party involved here, and its name is autism. So I put some of my guilt in the storage locker where I keep my self-pity and decided to just keep trying with Margaret and see what happened.

  A few days later the unexpected happened. I got a voice mail message from my big sister. That was a first. I heard heavy breathing into the phone. Then I heard her high little monotone voice saying, “Hello . . . Hello . . . Yes.” And in the background I heard a young woman’s voice saying, “Tell your sister hello. Say, ‘Hi, Eileen!’” Margaret dutifully said, “Hi, Eileen!” and hung up.

  I called back and talked to the young woman, Alicia, who was a new staff member at Margaret’s house. “She kept calling me Eileen, because our names kind of sound the same, and so I thought she might be missing you. I asked her if she wanted to call you and she said yes,” Alicia told me. Did Margaret really want to speak to me? If this was a gift horse, I wasn’t looking for bad teeth. We chatted for a few minutes, and Alicia filled me in on what Margaret had been doing. At the end of our conversation, she asked me if I wanted to talk to my sister. I hesitated. Margaret and I did not talk on the phone. My family didn’t have the best phone skills to begin with, but Margaret really hated the phone. I was pretty sure she would get agitated and hang up on me in about five seconds. But I thought, What the hell. I’m used to being hung up on. “Sure,” I said, and Alicia passed the phone to Margaret.

  We said hello, and I asked her what she had been doing, knowing she’d had a computer class that morning. She paused. “You went hiking,” she said firmly. It took me a second to realize that she was talking about our hiking excursion to Mount Spokane.

  “Yeah!” I said, pleased that she’d remembered. “We did go hiking last summer. But what did you do today? Did you have computer class?”

  “Yes.”

  “Was it fun?”

  “Yes.”

  “Who else was there?”

  Silence.

  “Who was in your class, Margs?”
/>   “You had computer class.”

  “Do you want to go hiking again soon?”

  Silence.

  “Maybe you can come see me at my house again.”

  Silence.

  “I’m really glad you came to see me with Tami and Teri and Ken.”

  Silence.

  “Margs, do you remember coming to my house? Do you know where I live?”

  “Yes.”

  This was a pretty typical conversation. Yes and no are standard answers for my sister. If you asked her if she wanted pancakes or eggs for breakfast, she’d probably say yes, but she’d really want cereal. I didn’t have any idea what she really thought most of the time. This was part of the challenge of having a relationship with an adult with severe autism. Lately it had seemed that she always wanted to go with me when I showed up, but sometimes I really couldn’t tell if she was glad to be with me or not, if I should even bother, or if I should just leave her alone. Our last encounter had made me even less sure, but I wanted to keep trying, so on the phone I asked her again.

  “Margaret, where do I live?”

  She hesitated and then I heard her say, “The river.”

  “Yeah, Hood River! That’s right. I live in Hood River!”

  “Hood River, Eileen,” she said. “That’s the HOOD River.”