How to Be a Sister Page 6

  It wasn’t just the screaming that was hard to deal with. In our young past, the waiting was often worse than the outbursts themselves. During every holiday, every birthday, every family outing, the rest of us had this feeling that something bad was about to happen. And we were usually right. We just couldn’t say when it would happen. The waiting made us nervous and jumpy. When I finally left for college, I felt like I’d been holding my breath for eighteen years.

  After the rest of us left home for school and then working life and marriage, Margaret often became very upset whenever we came home to visit. She would come over from her group home, and we’d all come from our respective towns in states or countries far away. At some point in the visit, something would set her off like Old Faithful at Yellowstone, and the family would act out our choreography of dysfunction and unhappiness. I knew my family was unremarkable in this. Adult children returning home to visit are usually on their worst behavior, drawn back into a role that no longer fits, like an itchy old sweater you can’t bring yourself to give away, even though you have nicer stuff to wear, and it doesn’t go with anything else in your closet. You check your real life at the door when you cross the threshold of the childhood home. I knew that was how I’d felt. I would feel especially upset to see Margaret continuing to act out. I’d think, Man, I can’t believe she is still doing that. She was probably sitting across the room from me, thinking, My God! I can’t believe she is still acting like this. And then she’d get up and rush across the room to give me a big smack on the rear.

  Remembering this, I have to admit that although I hate being spanked, watching Margaret spank someone else is absolutely hilarious. Most adults have lost that sixth sense we carry as children—the radar that alerts us to the fact that a sibling/cousin/friend/schoolmate has targeted us, is zeroing in at warp speed. Most grown-ups have forgotten to walk around with their backs to the wall to fend off a surprise attack. In this naïve and thoughtless way, they are usually completely unprepared for what they feel when Margaret swings into action. Her victims are so innocent, so vulnerable, that she has plenty of time for a running start and a complete windup: A grown man standing with a beer in his hand chatting about stocks and 401(k)s with my brother at the barbecue has no adult context for the sensation of being whomped on the rear by a near stranger. He jumps around, spilling his beer, with a child’s look of fear on his face. His fear turns to embarrassment, as if he must have done something to deserve this unexpected reprimand. Then it dawns on him that he is thirty-six, not six, and hasn’t done anything to deserve that. A look of anger creeps across his face. And there stands my big sister, hooting with laughter. “You don’t hit people on the bottom! That’s bad manners! Ha! Ha! Ha! Ha!” But what can he do? She’s not “normal,” right?

  This kind of behavior, however, was normal for us. So when I came home to visit and Margaret behaved badly, I’d get angry and sad at the same time, even though she often made me laugh, too. I’d yell at her or not, but I’d feel incredibly pissed off either way. If I yelled at her, she’d usually laugh at me. And if I tried to ignore her, she’d keep doing whatever it was she was doing, trying to get a rise out of me. I just wanted it to end, the misbehaving, so that we could all try to enjoy one another’s company. I’d leave feeling shitty, wondering if my presence was bringing out the worst in her. So now I was trying to think of how we could change things.

  That was part of this whole interest-sharing concept. This effort at normalcy was a challenge for all of us siblings, because although we functioned well enough in the world separately, when you brought us together we were a bit off. We tended to act like foreign exchange students in our own country: “Oh, I see; it is customary to purchase a card and even a small gift on the anniversary of the birth of a relative or other special acquaintance.” Or, “At mealtimes, all persons enjoy eating and drinking and even visiting for an extended period of time around the table. Usually none of the participants throws food at the others.” So we tried to act normal, and though we were not fooling one another, it helped to go through the motions. We went out to lunch. We went out for coffee. We shopped. We visited our grandmother. We’d become more collectively normal, at least on the outside.

  The first few times I hung out with Margaret away from my parents’ house, she shocked me with her calm. There was no hair pulling at the lunch counter. No spitting of soda back into the glass or weird grabbing motions or funny noises. One afternoon she sat at a restaurant with me, Ann, and Larry, just eating her food and smiling. Every once in a while she’d look up at us and grin. “Hi, Ann! There’s Ann!” she’d say, with real joy, over and over again.

  NOW, IN THE car, we wound our way up to the top of Mount Spokane, and I decided for myself that her mood was good. I found myself wanting to believe that this new version of my sister—the quiet Margaret, the calm, happy Margaret—was the real Margaret. The staff members at her group home had remarked upon her mellowing in the last couple of years. And when we went to the Starbucks near her house recently, I’d been impressed by the sense of being on her turf. The barista said, “Hey, Margaret! How’s it going? Grande decaf vanilla latte, right?” And she didn’t say it in that “I’m-being-nice-to-the-handicapped-person-because-I-am-kind” voice. She just treated her like a regular, because that’s what Margaret was. Margaret answered her, too, and remembered the woman’s name. I didn’t feel compelled to answer for her or say, “Margaret, tell the nice lady what you want, and stop shredding your napkin,” as I might have done in the past. I always feel like such an ass when I do that, like I am betraying her by trying to get her to act “normal” for the sake of other people. But I was the odd one out this time, a stranger who had to spell out my drink order for Margaret’s barista pal.

  Hiking was taking things to a whole new level. But then I reasoned that it was likely she would refuse to get in the car with me when I got to her house, so the odds were I didn’t have much to worry about. She might just say, “Nothankyou, Eileen,” and slam the door shut in my face. I was prepared for her to refuse and told myself that was just fine, that I would try again some other time. But she had already exceeded my expectations by coming with me, and I was feeling buoyed by that.

  Despite my happiness, my fear stayed with me. After all, it was just the two of us. Though Margaret was once inextricable from my daily life, I was no longer accustomed to spending time alone with her. As we rode in silence, I remembered a time I had taken her with me on a study date during high school, which had seemed like such a good idea at first. We went to the Coyote Café, where I worked, and I even got them to let us sit in a part of the restaurant that was quieter. I thought she would like to listen to the music (classic rock) and eat chips and salsa and color in her coloring books while I studied for my AP exams. We were there for about five minutes before she started laughing—loudly and hysterically—and spitting great foaming mouthfuls of Coke at me and onto my books. She wouldn’t stop. Or at least I didn’t wait to see if she would. Call me a coward, but I couldn’t take it that other diners were staring, that my co-workers were taking turns coming out into the lobby to gawk at Eileen’s weird sister. We left.

  That was years ago, but I was worried about what might happen and if I would be able to handle it. I was afraid and trying to pretend that I wasn’t and simultaneously wondering if I would be able to handle the thing I was pretending not to be worried about. But at least things had started out smoothly today. There we were, two adult sisters out for the day, listening to the radio and enjoying a long drive on a summer’s morning. We drove to the summit of Mount Spokane to take in the view.

  Mount Spokane is the southernmost peak in the Selkirk Range, which stretches up into British Columbia and Alberta. At its peak it rises to a height of nearly fifty-nine hundred feet and stands high above the nearby collection of small lakes—Newman, Hauser, and Spirit. We had grown up just miles from here, but I had no recollection of coming up to the mountain. Isn’t that how it is? You need to be a tourist in you
r own backyard to figure out where you came from.

  Margaret and I strolled a short trail near the summit and drank in the wild palette of silver-leafed yarrow, scarlet Indian paintbrush, and lacy spirea. With my little black dog, Dizzy, in tow, we listened to the wind in the towering Ponderosa pines. In the higher altitude it was sunny but chilly for July, something I always seemed to forget. The wind whipped through our hair as we climbed up to the stone lookout house. It was dark and cold inside. Empty, I thought. Margaret loved the echo in the long, low room, and she called out, “Well, hello, there!” to hear the sound of her own voice bounce off the chilly walls. “Hel-LOW, there!” She laughed. I laughed, too, because she sounded so normal and so cheerful, but she wasn’t talking to anyone. She was just loving the sound of her voice.

  I noticed a father and his two little boys standing in the lookout. I smiled and said hello, but the dad just looked at us with suspicion and didn’t say anything. The kids stared; the youngest one said, “Hi.” “Hi!” I said back. The dad said, “Let’s go, boys,” pretending like he didn’t see us or hear me. Margaret didn’t care; she was saying, again, “Well, HELLO, there!” and laughing. But it bugged me that he ignored us. It always has bugged me, being the “normal” one and watching the adults who decide that the best way to deal with the strangeness in my sister is to pretend she doesn’t exist.

  The wind and shade of the lookout cast a chill, so I gave Margaret a long-sleeved shirt, which she pulled on and zipped up against the cold. It was too small and stretched tight across her big boobs, but she didn’t seem to mind. We headed back to the footpath. Dizzy jogged along in front of us and circled back to check on us when we lagged too far behind. Dizzy sniffed Margaret’s hand as she passed, and my sister patted her gently as she danced her little canine foxtrot down the trail. We were silent listening to the wind, the creaking of the branches, and Dizzy’s prancing feet in the dust sending up puffs of red-brown dirt. Somehow the scents and colors seemed to intensify, too. We left a quiet in our wake.

  For once I didn’t feel like I needed to say anything, and Margaret was all contentment, letting one moment lead to another, not having to ask what came next, when we were going home, where the car was, where Mom was, where her staff members were. I had a great time. She had a fine time, too, I think.

  Please don’t think it was perfect. After all, life isn’t a Disney movie. I had to close my eyes and count to ten when Margaret decided that she really did not like the gourmet turkey sandwich I had brought for our picnic and, to demonstrate her displeasure, threw it at my head, mayonnaise side up. Yes, there are undoubtedly more appropriate ways to demonstrate one’s culinary preferences, but at least she didn’t yell or hit me. Or throw her soda can into the brush so I would have to scramble after it. She just looked at me with a bit of outrage as if to ask why in God’s name I would offer her such a piece-of-crap sandwich, and then she threw it at me. I kept counting after the focaccia bounced off my hair and into the bushes, and ultimately decided that $6.95 was a small price to pay for the peace and quiet that Margaret and I had shared up to this moment.

  Dizzy was happy to take care of the rejected bun and its contents, and Margaret seemed content with the soda, chips, and cookie in her lunch box. I didn’t even say anything about the sandwich throwing. I just wiped the mayonnaise out of my hair with my napkin and handed over my bag of chips when Margaret had finished hers. She grabbed them from me without a word, tore open the bag, and ate them one by one while Dizzy sat and watched for crumbs. We all finished eating in a peaceful silence.

  I still found the “peaceful silence” part amusing. This was the person who had kept me from getting a good night’s sleep for eighteen years and had sabotaged nearly every family holiday and special occasion with some bit of wild behavior. Now, here she was, sitting across from me at a worn, splintery picnic table with the wind and the sun in her face, offering me this tremendous, unlikely gift: her happiness, her contentment, her quiet. Life is nothing if not surprising.

  We drove home, down the mountain, past the farms, into the city limits, where the neon lights that lined Division Street were turning on for the evening. When I took her home, Margaret let me come into her house and say hello to her housemates for about ninety seconds, which was a big concession on her part. I knew my limits and didn’t try to stay too long. She had her boundaries, and she was able to be very clear about them in her own way. I chatted with her friends as she stood behind me, nervously twisting her hands, anxious for me to leave, but not knowing how to ask. When I said I guess I’d better go, a huge smile broke out on her face. She gave me the bum’s rush out the door, her signature farewell. “Okay! Bye-bye! Thank-you-very-much-for-the-hike-Eileen! See you later! Bye-bye!” She gave me a firm shove over the doorjamb and slammed the door behind me with great gusto, nearly catching me in the ass. I stood on the porch, laughing, thinking that with Margaret there is never any doubt in your mind about whether it is time to go.

  As I drove away, I kept the radio off and enjoyed the quiet. I thought about my big sister and how she kept surprising me. And I wondered about what we might do the next time I came to visit. I recalled the end of our hike when, as we walked toward the car, we hit a stretch of slippery gravel. Margaret had reached out and grabbed my shoulder to steady herself. Here is another of life’s great ironies—Margaret’s fears. This is a woman who thinks nothing about walking out into the lobby of the YWCA totally naked, swimsuit in hand, to ask someone to help her put it on. A person who would probably not think about putting out a fire in the kitchen if she happened to be listening to her favorite record. Someone who has no shame about disrupting a holy mass with some laughter or loud talking. This is a person who, as a child, once rode her bicycle downtown and out onto the highway at dusk. Suffice it to say she isn’t afraid of most things that other people are afraid of, but give her a slight incline and a little loose gravel and she is a bundle of nerves.

  With her feet sliding mildly, she had grabbed my forearm with both hands and sidestepped her way carefully down the slope. After the worst of it was over, she let go of me with one hand and grabbed my hand with the other. She held on to me all the way back to the car. I didn’t mind. It was actually very nice having my big sister hang on to me. The physical contact that we take for granted when we are children or when we are with children is not easily sustained between adults. I liked feeling my sister’s slender hand in mine, her long fingers twined around my own in a silent request for moral support. The distance we’d traveled away from each other in the last two decades seemed gone in an instant. The years of anger and frustration and disappointment somehow 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.