AS I SAT there staring at Margaret’s front porch, I tried to tell myself I wasn’t going to figure it all out at once. That was the idea behind the lunch date—starting with something easy. People often say that if you break a problem down into its parts and deal with one part at a time, what seems impossible is actually easy. But then again, people who talk in clichés are apt to bring up those four blind guys who describe an elephant four different ways, depending on which part each has in his hands. That was a worrisome metaphor, as it made me fear I would never understand this family puzzle until it was too late. And as far as I could tell, an elephant was an elephant no matter which part you were holding on to. The elephant in our family room had never seemed bigger than how it looked from where I was sitting in my mother’s car.
But I realized that I couldn’t keep on living with this large animal, and I was tired of stepping around it. I felt like something had to give. I didn’t know precisely what to do but was smart enough to realize that what I had been doing for the past few years hadn’t worked. Before I made this trip, I had known that I wanted to see Margaret, but I couldn’t face another family gathering with the firebomb of my sister’s autism igniting again the pages of the family history. I’d thought anything had to be better than that. So I took a deep breath, picked up the phone, and called Margaret to ask if she wanted to go out for lunch with me, alone. After a few seconds of mutual anxiety-ridden silence, she mumbled yes and hung up on me.
Standing there with the phone in my hand, listening to the dial tone, I had let my thoughts run through the minefield of things that might go wrong during a lunch date with Margaret. I thought it all through. I surrendered myself to whatever might happen and wrote it down on my calendar: “Pick up Margaret for lunch, 11:45 AM, Friday.” And then I went to the liquor cabinet and poured myself a stiff drink.
I grew up alongside my sister’s eccentricities, never really noticing how strange she could be, because I’d never known anything else. Just as I always knew to jump in the air to avoid being shocked by the shorted-out refrigerator at the lake house, and to move the cat out of the fruit basket before putting the bananas in it, I always knew that with Margaret along we were likely to be the center of attention at any public event, and not in a good way. When Margaret misbehaved, everyone would stare, and I always thought they were looking at me, too. Sometimes the faces were just curious; sometimes they were angry or afraid. After a while I felt like people were staring even when they weren’t. As we grew older and I passed her developmentally, I began to feel responsible for the staring.
It was confusing, at best, to be learning life’s rules and social graces alongside someone who consistently violated every one of them. We wandered through an etiquette desert without a guide. We needed an Emily Post of autism to lead us through the rough patches, but when she didn’t show up we forged ahead anyway. My siblings and I remain, as adults, a self-guided lot, still figuring things out as we go.
I often feel like this about my life: mapless, guideless, as if I am actually hammering the nails into the wood of the bridge I need to walk across one crappy, ramshackle board at a time. I always feel like I’m showing up just a bit unprepared in life, like everyone else got the memo or took the class while I was busy looking for someplace to park or finding the bathroom. I thought about that now as I sat outside Margaret’s house, trying to work up enough surrender to get out of the car and knock on the door.
Sitting in the car, I reminded myself that lunch was a fairly safe option. Everybody has to eat, right? So I sent a prayer to the Universe to help everything be okay. I prayed for optimism and grace. I wished I could have a drink, but it wasn’t even noon yet. Instead, I opened the door and got out of the car.
2.
lunch date
Eating in fast food restaurants seldom requires more than everyday good manners.
—On Dining Out, EMILY POST’S ETIQUETTE
AS AN ADULT with severe autism, my sister has had her share of struggles. Thankfully, I recalled as I stood next to the car, housing is no longer one of them. Margaret lives in an old Craftsman-style house near Gonzaga University in Spokane. My parents bought and renovated the house when it became clear that the crappy public housing apartments available to Margaret weren’t going to cut it. She kept getting kicked out. “Too noisy,” the landlords always said. Well, duh! I always thought. Anyone who has ever lived in one of those shaky, 1970s-era cardboard constructions will tell you that you can hear someone opening a box of Kleenex three doors down. So imagine what might happen if you lived next door to someone who weighed 180 pounds and was in the habit of throwing herself against the walls and floors during occasional periods of frustration. Too noisy.
So Margaret’s house became a group home for adults with disabilities expressly because the landlords, my parents, would never kick Margaret out. It has been home to Margaret and her three housemates for many years. A twenty-four-hour staff supports the four of them in living as independently as they can. I painted the house one summer right before Margaret moved in, and I loved every corner. It’s the kind of house everyone should have—a big porch and a nice yard, lots of windows to let in the sunshine. The neighborhood sidewalks end in rounded curbs, and the streets—wide enough to drive a circus through—are lined with lovely old trees.
From where I was standing at the curb now, I could see groups of college students heading to campus in their cargo shorts and backpacks. On the way there I’d driven past a herd of toddlers being shepherded along by a couple of middle-aged women. The air was full of chattering little voices and a rainbow of T-shirts as bright as the summer flowers. It made me happy to see the “neighborhoodiness” of Margaret’s neighborhood, especially when I remembered that some of the neighbors in the other nice, big houses initially weren’t too keen on the idea of having a group home in their midst.
I looked at Margaret’s front door, knowing I was right on time. Punctuality is a family affliction. We are the people who are eight and half minutes early when the rest of America is running fifteen minutes late. I also knew that Margaret had probably been waiting restlessly for hours, possibly because she was excited to see me but mostly because she was just anxious. We are indeed an anxious people; we like to stick to the schedule, get on with the show. Margaret’s disorder seems to amplify that characteristic. From the curb, I could see her standing at the picture window in the living room watching me. Even so, she actually let me come up the walkway instead of running out the door, pulling her coat on. She let me climb the stairs and knock on the door like a normal person, which was fun for me.
Normally she might just charge out the door when she saw the car coming down the street, and I’d miss out on practicing the normalcy of it all—the walkway, the knock, the door, the greeting, the introductions and small talk, the leave-taking. Even now, as an adult, I loved the distinct phases of events that I had missed out on in my youth, the almost invisible transitions in social situations. I even loved the moments of awkwardness when nobody knew what to do next. I had spent so many years under the steamroller of autism that these bumps and breaks still held a great deal of appeal for me. These adult days followed a childhood during which greetings and partings meant chasing my mother, who was chasing my sister, who was running through a crowd at some church or school function, and I would wave hello or good-bye at people who gaped at us as we sprinted past.
Now, when I knocked, Margaret yanked the door open. “Hi, Eileen!” she said, waving at me from just two feet away and holding the door open. It was almost like we were regular people. Uninvited, because Margaret wouldn’t think to invite someone in, I stepped across the threshold to greet my sister. Here is Margaret, in my arms, the real person. She allowed me a brief hug and then scurried off to get her things. I turned to greet the staff member who’d come in from the living room. Two of Margaret’s housemates crowded into the foyer to see who was at the door, and I said hello to them, too.
Sarah is the resident busybody at
the house. My parents tell me that she makes it her job to keep tabs on Margaret, Ken, Gerald, and the staff—their comings and goings, as well as their smallest tragedies and victories. It’s nearly impossible to keep a secret when Sarah is around, as she is so diligent in her information gathering. “Where you goin’?” she now demanded of me, and I began to understand where she got her reputation. I told her we were going out to lunch. In exchange for this piece of information she offered me some from her own stash: Margaret had gone to my parents’ house a few days earlier. Then my mother brought Margaret home. And her boots were in the closet, too. She told me all of this rapidly and ended with a satisfied nod. Ken didn’t say anything. He just fluttered his hand at me when I asked him how he was doing and grimaced in an attempt to smile.
During this exchange of niceties, Margaret was a tempest of activity. She grabbed her fanny pack off the table by the door, heaved it around her hips, and clicked the clasp shut. Then she rushed over to Sarah, who bowed her head so that Margaret could smell her hair, an old habit of my sister’s. Margaret gave a big sniff, yelled, “Bye, Sarah!” and trotted out the door and down the wooden steps of the big blue house, ignoring everyone else. I’d forgotten how fast she could move, so I was doing double time trying to keep up as I called good-bye to the rest of them over my shoulder and followed her out to the car. So much for transitions. So much for leaving behind greetings and partings while running.
Margaret stood and waited for me next to the car, her hands clasped in front of her and resting on her big tummy, her eyes cast down at her feet. I looked her over as I walked toward the car, thinking that in her tennis shoes, blue jeans, and pastel Windbreaker, my older sister looked like any other thirty-something woman on her day off. Her short hair looked good, turning reddish in the summer sunlight. I noticed that she was showing some gray, but at least her hair didn’t look like she had recently tried to cut it herself, a longtime favorite prank.
When we were younger, if Margaret got her hands on a pair of scissors, she would go looking for my mother. Then she’d grab a hank of her hair and call out sweetly, “Hi, Mom!” When my mother looked up from whatever she was doing, Margaret would chirp, “You don’t cut your hair, Mom!” Snip! And then my mother, too late, would yell, “Margaret! Don’t cut your hair!” And my sister would laugh and laugh and run away with her crazy new haircut.
I didn’t know how often she was cutting her hair these days. But it was still pretty hard to find a pair of scissors around my parents’ house. The last time I had been home for Christmas, I’d found myself folding, licking, and tearing wrapping paper to cover my presents, because the scissors had been hidden so well that no one could remember where they were. This was just one example of how we tried to anticipate Margaret’s behavior and not only failed but also made things harder on ourselves. Even better, Margaret probably knew where the scissors were and could have saved me some time and saliva if I’d just asked her to get them for me.
My family had spent a collective lifetime trying to predict what Margaret might do and how to deal with it. But she was as mutable as a summer storm—and as surprising and terrifying. Funny haircuts were just the tip of the iceberg, and not so important. The more significant and overwhelming issue was our inability to connect with her, to know for sure if we were reaching the person who was Margaret behind the disorder that was autism, and what, in the end, we were supposed to do about it. Sometimes we had to be satisfied with smaller accomplishments, like her haircut. The fact that she had left it alone was a signal to me that she was feeling okay inside. Besides, her haircut also looked really cute, which made me happy. I’ve always hoped my sister could have a normal life, as far as that is possible. And when she looks like everyone else, she blends in more easily.
Margaret rubbed her chin as she waited for me to cross the lawn and unlock the car. She didn’t look at me as she yanked the door open, jumped in, and slammed it shut so hard that the car rocked from side to side. I’d forgotten about this behavior, so it startled me for a minute. I don’t know what it is with Margaret and doors, but “closed” to her always takes this much force—no more, no less. As the rocking stopped, I got in. She reached over her shoulder and yanked on her seat belt. She waited until I turned the key, then she leaned over, released the emergency brake, and shifted the car into drive for me. “Thanks,” I said, surprised. But she didn’t say anything, just waited for me to drive and looked out the window as we made our way to the local diner. It was a short drive, and neither of us spoke on the way there. As soon as I eased into a parking space, Margaret reached over and threw the car into park, yanked up on the emergency brake, turned the car off, and tossed me the keys. Then she undid her seat belt and jumped out of the car in one motion, slamming the door just as hard as when she had gotten in. She speed-walked toward the diner, and I laughed out loud, even as I hurried to follow her. This was new. U-Park Valet Service.
Arnie’s was probably packed with Gonzaga University students during the school year, but on this summer day the 1950s-style diner was empty but for us and the staff—two young women wearing chest-hugging T-shirts and tight blue jeans. From what I gathered, one of them, the cook, was terribly hungover. It was a little worrying to think about ordering lunch knowing that it was to be prepared by the person who kept leaving her post to lie down in a booth and moan. But I tried to be brave, and we took our seats at the counter to look over the menu.
As we sat on our red vinyl stools, I found myself feeling smug. Here we are. Two sisters having lunch. How nice. How normal. What’s so hard about this? In truth, I’d been dreading this lunch date all week. But by the time we got our butts onto the shiny red stools, I was cautiously optimistic and feeling a little giddy with the success of getting to the restaurant without mishap. Margaret’s routine had been interrupted, and she was okay and seemed happy to be with me. That this feeling was short-lived didn’t make it any less sweet.
Margaret quickly ordered and drank a couple of Cokes. I tried to make small talk—you know, like you would when you are having lunch with your sister. It seemed like the normal thing to do, but then again, I’d been away from home so long that I tended to get my “normals” mixed up. I started asking her about what she had been doing lately. I knew she was training for the Washington State Special Olympics swimming competition, which meant she was spending a lot of time at the pool with her team and her coach. Although she loves to swim, she does not like to talk about swimming. She doesn’t like to talk much, period. And when Margaret is not in the mood to talk, she responds like she’s blindfolded and handcuffed, sitting under the harsh glare of a bare bulb in an interrogation room. Of course, I tried to converse with her anyway.
“Did you go to swimming practice this week?”
Silence.
“Margs, did you go to swimming practice this week?”
“Yes!” she barked, not looking at me.
“Who else was there?”
Silence.
“Margs, who else was at swimming practice with you?”
“Yes! You went to swimming practice!”
She gets her pronouns mixed up, which is not uncommon for someone with autism. She often says “you” when she means “I,” but I usually know what she is talking about. This time there was no ambiguity. She was saying, “Shut the fuck up and let me drink my Coke, for Chrissakes!” But I kept on trying, like an idiot.
“I like your haircut, Margs,” I said. “Who cut your hair? Did Sherry cut it?”
My mother, grandmother, and Margaret have all been getting their hair cut by Sherry for the last twenty-five years or so, and Margaret loves Sherry, but she didn’t bite. Instead, she swiveled her stool to the right, away from me, as if to say, “If I can’t see you, maybe you will go away!” I finally took the hint and shut up. I didn’t want to piss her off, because she might try to leave. Really. At that moment, I wouldn’t have been surprised to see her get up and run out the door as if to say, “I’ve had enough of this crap!” I didn�
��t want her to feel like she had to leave. I also didn’t want her to have to defend her silence by chucking something across the room, like the stainless-steel napkin dispenser in front of us, or the ketchup bottle, or my water glass. I scanned the counter in front of us, imagining the possibilities.
What am I doing, anyway? I asked myself. Who is this chatty conversation for? She obviously didn’t want to talk, and I wasn’t going to get any information from her. She clearly didn’t want any from me. Maybe I was trying to make us seem more normal for the hungover café staff.
As stupid as that sounds, it’s probably the truth. I spent the first half of my life painfully self-conscious about what people thought of us and wanting to seem more normal. And here I was doing it again, thinking that we must look weird, that two grown women in their thirties don’t usually sit next to each other in complete silence at a café. Unless they are fighting. Or really hungover. But I’d also been thinking a lot about giving up on “usually” and “normal,” so I shut up and just sat there drinking my Coke.
Perched on her stool, Margaret seemed happy and quiet after I finally stopped talking to her. She spread the fingers of her right hand and laid them out on the counter in front of her. She pressed all five digits into the Formica, then subtracted one so that she was pressing four, then three, then two, then the thumb went and there was just the index finger. Then she added them back in: one, two, three, four, five. She chuckled to herself as she did it again.
We sat. The griddle popped and spat grease. The fry basket gurgled, the cook moaned, the soda fountain kicked out Margaret’s third Coke. Campy music poured out of small speakers mounted around the room. The fan whirred overhead.
How to Be a Sister Page 2
