How to Be a Sister

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.

“WHY DON’T YOU shut up?” I heard my big sister mutter, and then she looked at me out o“f the corner of her eye. My face was red with embarrassment and shame, but something more complicated, too. Regret, the desire to be understood as a better person, or the desire to have actually been a better person. Margaret was sitting in the big easy chair in my living room, refusing to come to the table and eat with the staff members of her group home who had agreed to stop by my house so that Margaret and I could have a nice family visit. Is that really what I had been hoping for when I made these plans? “Margaret, don’t you want a sandwich?” This question came from Tami, the lead staff person. My big sister just shook her head again and, looking at me again, said quietly, “Why don’t you shut up?”

MY SISTER MARGARET has a complicated memory full of hidden drawers and magic locks. Within it lies a strange ability to recall some bizarre minutiae and a failure to grasp many everyday occurrences, a quirk that is funny as often as it is heartbreaking. If I called her up right this minute, for example, she’d probably sit right next to the phone and just let it ring and ring. Maybe she would even get up and walk away from it. She has no social trigger, no urgency within her to respond to the sound of that shrill bell the way the rest of us do. This harbinger of communication simply holds no sway.

On the other hand, she might remind everybody, out of the blue, that our dachshund is dead. “Louie died,” she’ll say. “Louie’s dead.” It’s true, too, about Louie. In fact, Louie is long dead. He was already ancient by the time I was born, a nippy, grouchy miniature dachshund. Even so, I loved him with a child’s passion and mourned him when he died.

Years after his death, Margaret would poke her head in the kitchen door from the living room, where she was listening to her music, and say, “Hi, Mom. Hi. Mom . . . Mom? Louie died, Mom. Louie’s dead, Mom.” My mother didn’t even have to look up from whatever she was doing. She’d reply mechanically, “Yes, Margaret. Louie died.” And Margaret’s head would disappear back into the living room. My sister wasn’t fondly resurrecting his memory or sharing her grief about the loss of our first family pet. She just wanted to hear my mother repeat this phrase back to her. Louie died in the 1970s, and Margaret is still likely to bring up his death at Christmas dinner or Easter, for no apparent reason. “Louie died. Louie’s dead, Eileen. Eileen, Louie died,” she tells me. And she won’t let it drop until she gets someone to respond. “Yes, Margaret. That’s right. Louie died.” The idea is locked away inside her memory and pops up every once in a while like the alarm clock in the guest room that someone forgot to shut off.

Medical experts call this kind of thing echolalia, a behavior that is classified as a compulsion common to people with autism. Writer Kamran Nazeer, who has autism himself, describes it as a desire for local coherence: “a preference for a limited, immediate form of order as protection against complexity or confusion.”

That might be true about echolalia, but in our family the repetition of these phrases was often the only kind of conversation we could have with my sister, so we welcomed it. And throughout the years, these verbal tics, the things she remembered, piled up to become a kind of historical catalog for our family. As such I’ve come to think of Margaret as the archivist of the family history, which is not so much made up of a linear sequence of trips and celebrations, vacations, and holidays like normal families might have. Instead, our collective past is cobbled together out of the things that my sister said and did, then remembered—the bizarre and mundane, the hysterical and the heartbreaking.

So, for example, one Easter when my sister Ann called to invite me to dinner, I paused and then I said, “Eas-TER-mass!” and we both cracked up. We were both remembering a particular spring morning that my mother had been struggling to get Margaret ready for church. “Honey, it’s time to go to Easter mass.” Our sister was really irritated, pulling on her wrists, stamping her feet, resisting, and yelling, “Eas-TER-mass!” in an angry echo of our mother’s kind voice. None of us can say “Easter” anymore without at least thinking of this. Similarly, one recent summer I stood in the grocery store aisle next to my brother as we tried to choose a salad dressing. We both sang out, “WISH-bone!” and snickered at each other. Margaret used to say this, flinging one hand high in the air—happy or irritated, I can’t recall—but Larry and his law school housemates kept it alive all these years. So we stood there, two decades later, giggling to ourselves in the store. Now we were the ones being stared at, but we finally didn’t care.

Over the years these episodes became the unlikely family glue, sometimes because we were all laughing and at other times because we were all made miserable by whatever Margaret was saying; whatever the case, we were in it together, and it was often the only kind of family togetherness we really had. We were like survivors of the same hurricane, strangers who clung to each other in giddy relief after the storm had passed. Laughter was our way of finding some way through what would have otherwise been a dark and endless labyrinth of small disasters, like “Here Comes Peter Cottontail.”

This song was one of the lively secular tunes Margaret learned in her music class at the public school she attended. My Catholic school, which I was led to believe was superior in academics and spirituality, didn’t have a special education program. So Margaret climbed onto the public school bus every morning in her “play clothes,” and the rest of us marched down the hill in our matching red cardigans and blue corduroy pants. In music class we droned our way through churchy dirges like “Make Me a Channel of Your Peace” or shouted “THE KING OF GLORY” at evening concerts. We stood shoulder to shoulder with the other little soldiers of Christ, dutifully singing the praises of our Lord in the dark, damp cafeteria, which smelled eternally of warm bologna and bananas from our brown bag lunches.

Not Margaret. Her set list was full of happy, God-free tunes. This was public school, after all. So while our Easter season brought songs of the joy of resurrection from the dead, Margaret’s class sang about retail:

Here comes Peter Cottontail. Hoppin’ down the bunny trail.
Hippity hoppity Easter’s on its way!
Bringing every girl and boy baskets full of Easter joy.
Things to make your Easter bright and gay!
There are jelly beans for Tommy, colored eggs for sister Sue.
There’s an orchid for your Mommy and an Easter bonnet, too!

The song was entered into Margaret’s hard drive, and there it stayed. Margaret loved that song and sang it often, and not necessarily at Easter. She’d pull it out any old time, just as she would put on a Christmas record in July, which always made the summer days seem hotter.

One day, when Margaret, Larry, and his friend John were sitting in our twelve-passenger Chevy van waiting for our mother to come out of a store, “Peter Cottontail” morphed into something completely different. The boys grew hot, then bored, as you do when you’re a kid waiting for an adult to finish some eternal and meaningless errand. Margaret became anxious, as she often did when she had to wait. Her anxiety turned to impatience, and she started singing “Here Comes Peter Cottontail” to voice her frustration, clapping her hands to keep time. Her singing turned irritated and then angry.

To pass the time, Larry and John started teasing Margaret, which really pissed her off. She started singing louder and louder and clapping harder and harder. Soon she was banging her hands together and yelling, “Here comes Peter Cottontail!” Then, “Here comes Peter COW-ten-table!” All the time, Larry and John were needling her, asking, “Which Cottontail, Margaret? Which Cottontail?” After they got her all wound up about Peter COW-ten-table, they decided to try to get her to say, “Here come the cops! Hide the pot!” Somehow, by the time my mother got back to the van, these two phrases had merged, so now when the boys asked my sister, “Which Cottontail?” she’d say, “Here come the cops! Hide the pot!”

On the day in question, of course, she was in a bad mood. But as the months and years passed and we kept asking her this question, she would laugh right along with us, and so “Which Cottontail?” became a shared joke. It’s impossible that Margaret understood why we thought it was funny, but she seemed to think it was funny to make us laugh. Even our straitlaced mother, who wouldn’t recognize marijuana if she found it growing next to her petunias, thought this was hilarious, although she scolded us as she laughed. The last thing she needed was to have my sister pull out this doozy in public.

The question remains: Why would we do such a thing to a person made so vulnerable by her disability? How could we, raised to be good young Catholics, take advantage of our poor, handicapped sister? We weren’t trying to be mean; we were just being ourselves. So was Margaret.

About 40 percent of children with autism don’t speak at all, so Margaret was luckier than some, even with her limited communication. She didn’t say a word until she was about four years old. And then she said only about four words, two of which she made up herself, “quadee” and “ninga-ninga.” When she did speak, she exhibited echolalia, repeating what had been said to her. She first learned to talk by echoing things her speech therapist had said. At some point she also picked up the habit of cupping her hand and talking into it. My mother theorizes that this might have helped her hear the sound of her own voice better. Whatever the reason, when she does this, she looks like a covert CIA operative talking into the little microphone wired down her sleeve. She still has this habit; sometimes I’ll catch her circling a room and whispering into her hand like she’s trying to figure out where the shooter is so she can communicate with head-quarters.

As I mentioned earlier, Margaret has trouble with pronouns, too, which is also common for people with autism. For example, if you ask her “Do you want breakfast?” She is apt to nod and say, “You want breakfast.” All of this is to say that communication has always been difficult for my big sister and that her teachers, staff members, and family have tried all kinds of things over the years to help her with the give-and-take of conversation and information.

Educational props sometimes failed, as was the case with a book that was supposed to explain prepositions by illustrating different objects being next to, over, under, and beside each other. My mother didn’t like this book, partly because it didn’t make any attempt to illustrate objects that might be next to each other in the real world. There was a particularly onerous series about a sheep, a table, and a hamburger that were all the same size and scale. Whoever was working with Margaret would point to the page and ask, “Margaret, where’s the sheep?” and she’d respond, robotically, “The sheep is between the table and the hamburger,” as she’d been taught. She never said, “It’s in the middle.” Or “The sheep is next to the hamburger and also next to the table,” or “My, that hamburger looks tasty sitting across from the table!” She never demonstrated that she understood the relationships; she just echoed what she’d heard.

This all happened decades ago, and yet, when I recently asked her about the sheep, she said, without missing a beat, “The sheep is between the table and the hamburger,” and she gave me a little smile. When we were kids, we asked her this question over and over again, and she’d give the same answer, and we’d all fall apart laughing. My sister laughed right along with us. I really don’t know why she thought it was funny, but at least we were laughing together, which was just this side of normal. Whatever the reason, the sheep, the table, and the hamburger have stuck around over the years, a testament to Margaret’s memory and to our history together, if nothing else.

AS AN ADULT, it horrifies me to think about the things we taught Margaret to parrot, intentionally and unintentionally. “Neal Diamond is a foxy woman” was one of them. “This is the fucking shit” was a favorite of mine that Margaret picked up on her own and would intone at random. “Larry’s wearing Crustos!” she’d sing, along with “Larry push a penis!” also inspired by our teenaged bathroom humor. “Well, Mike!” she’ll still say, perfectly mimicking my mother’s surprise at something our brother did years ago that no one can remember.

These phrases were our common language when we couldn’t share much of anything else. And they linger still. Just the other day, when I was riding my mountain bike way too fast and nearly crashed into a tree, a Margaret-ism sprang unbidden to my lips from deep inside my own memory: “SOME-in-a-BITCH!” I yelled and laughed out loud in the woods all by myself. And one recent morning as I waited sleepily in front of the toaster with a jar of Adams peanut butter in my hand, I thought to myself, “PEA-nut butter and JE-lly!” in a familiar sing-song voice and snorted so hard that my coffee came out my nose.

Yes, we teased her, but we loved our sister and fiercely defended her from outsiders, like the unkind neighbor kids who heckled my silent sister for riding her bike on the sidewalk as she bashed her front wheel up, over, and down off of each non-bike-friendly curb. Or the kids at school who made “retard” jokes. Then there was that scary neighbor mom who chased Margaret out of her house in a bath towel. My sister had simply let herself in to make a (PEA-NUT butter and JE-lly!) sandwich while this woman was soaking in the tub. At the time, I remember wondering what she was doing taking a bath in the middle of the day anyway. And it was just a sandwich!

It occurred to me recently that the rest of us thought these things—like the sheep and Peter COW-ten-table—were funny because we could control them. We knew Margaret wouldn’t pull out the pot warning unless we conjured it. She wouldn’t unleash this particular phrase in public unless we hit the spring lock in her mind that released it. It was like a magic trick we were all in on. And maybe it was somehow a comfort for all the things she did say in public, the endless things she did let loose on us. This comforting certainty was as significant as it was unusual; our collective childhood was full of the unpredictable from our sister—an infinite number of mortifying episodes in silent churches, crowded malls, and sacred ceremonies. They are seared into my memory because of what I like to call the Oh, No Moment—the instant it became clear that Margaret was about to explode with mirth, anger, or impatience and that all eyes were about to turn to us.

Margaret always seemed to get revved up exactly when we wished she’d just be quiet and blend in. This kind of thing was especially hard when we were teenagers—a time in life that is difficult enough by itself. I grew adept at pretending that whatever was happening wasn’t happening to me; I became a kind of silent observer in my own life. Shopping with Margaret during a visit with our Portland cousins was such an occasion. They took us to a brand-new atrium-like shopping mall downtown, the kind with a big escalator in the middle and three open floors rising up in a large, echoey glass arch. As we stepped onto the escalator on the top floor, Margaret leaned out over the rail, looked into that wide-open space teeming with people, and hollered, “Get your hands out of your pants!”

She loved yelling this sentence and yelled it all the time. The first time she had heard it, I’m sure, it was probably a quiet reprimand from my mother, a woman of infinite patience, who worried about Margaret’s habit of standing around with her hand down her waistband. She wasn’t touching herself or anything. She was just standing there with one hand inside her pants, like little kids will do, like my sixth-grade math teacher did, as a matter of fact. But my mom was always working on the little graces to try to help Margaret blend in more. “Life is going to be hard enough for her,” Mom would say.

Somehow, unaccountably, this gentle correction had become translated into a command of Wizard of Oz–like proportions in my sister’s head. “Get your HAAAAANDS! Outta your PAAAAANTS!” she boomed, holding on to the last word, loving the echo in the mall. When my brothers and I shushed her, she started cackling and yelled it again: “Get your HAAAAANDS! Outta your PAAAAANTS! Get your HAAAAANDS! Outta your PAAAAANTS!” She kept yelling until she was laughing too hard to get the words out. She doubled over, hanging on to us as the escalator descended, helpless with laughter. “Get your ha! Ha! Ha hahahahahahaha! Get your hands! Hahahahaha!”

My brothers and I felt like the whole world was watching as the escalator crawled to the ground floor and we held up our big, hooting sister. We kept trying to get her to shut up, which only seemed to get her going again. For some reason, it always made Margaret hysterical with laughter when we got mad at her in situations like this. “Get your hands outta your pants!” and her laughter echoed behind us as we fled the mall, the big glass doors finally swinging shut behind us.

The quiet and holy Catholic church provided another regular venue for Margaret’s verbal showboating. My parents seemed to think a weekly dose of the Holy Trinity was imperative for their young brood, especially Margaret, who, unlike the other four of us, didn’t have religion class every day at school. When I think of it that way, I can understand why they kept bringing her to church, even though my mother often ended up listening to the end of mass behind closed doors in the foyer with the young mothers, their fussy babies, and Margaret.

More than once my sister ran up on the altar and started a lively rendition of some tune, including “Yes, Jesus Loves Me,” before my mother sprinted up and chased her off. Another time, when a visiting priest took a little too long with his homily, Margaret stood up and said, in an exact echo of my mother’s scolding voice, “That’s enough!” Surprised, he stopped, glanced around at the congregation, and, good sport that he was, said, “Well, I can’t argue with that.” And he sat down. That time, everybody laughed along with us.

What’s also remarkable about these songs and phrases is that Margaret’s reproduction of them was exact in tempo and pitch. Every time she said, for example, “EAT your GOD! DAMN! SANDWICH!”—an echo of our exasperated father—she bellowed it grandly, holding each word but the second for two beats. She had a talent for timing, tempo, and pitch that was quite amazing and might have been the envy of some musicians. However, this skill could backfire, because she couldn’t tolerate any music that was even slightly off pitch, like at holiday mass when we had visiting musicians. We could almost always count on some pimply-faced college student to straggle off key during his “Silent Night” trumpet solo. While the rest of us smiled woodenly and prayed to Jesus that he wouldn’t play every single verse of this endless holiday tune, my sister became apoplectic. At the first bad note, she’d stick her fingers in her ears, squeeze her eyes shut, and shriek to block out the sound. “Reeeeeeeeeeeeeeeee! Reeeeeeeeeeeeeeeeee!”

To be fair, that’s what the rest of us wanted to do, too. But when someone is doing their best, it isn’t polite to tell them they suck. My mother would struggle to silence my sister. Everyone sitting near us would pretend nothing had happened, while those sitting farther away would strain their necks to stare at us. The young trumpet player would suffer through the rest of the mass, knowing that as soon as he picked up his horn, that weird kid in the third row was going to sound off like a tornado siren, and the rest of us would look at the floor, look at the pew in front of us, look anywhere but at each other. Because if we did, we would fall apart with embarrassment and laughter.

IN THE HISTORY of my sister’s unholy disruptions, one church outburst took the gold in the Garvin Family Hall of Shame. It happened one Sunday during the sign of peace when we all had our guards down. This is the time during Catholic mass before communion when you turn to the people around you, extend your hand, and say, “Peace be with you.” As a kid I loved this part, because we’d been sitting in the dark for almost an hour, and it was a relief to be able to move around, stretch, talk to other people, and even yawn openly without anyone noticing. I have to wonder if the Vatican II folks stuck it in there to make sure people woke up before the end of mass.

My mother was always at Margaret’s side to facilitate this process, to remind her to hold out her hand, to tell her what to say. But on this particular day my mother must have had her back turned for a nanosecond as she greeted someone. Margaret was sitting near this nice little blue-haired lady, who was, thankfully, hard of hearing. When the woman put out her soft little boneless hand and said, “Peace be with you, dear,” my big sister reached out, grasped her hand, and pumped it up and down as she exclaimed, “I’m gonna KICK the SH—!” and would have finished “—IT outta ya!” had my mother not spun around and clapped a hand over her mouth.

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’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.

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.

I was ridiculously pleased that she kind of remembered the name of my town. You’d think I’d won a trip for two to Maui, the way I was beaming. While I was savoring this sisterly moment, Margaret said, “Okay! G’bye!” and hung up on me. I laughed and said good-bye to the air, said good-bye to nobody, and hung up the phone.

As I stood there by myself in my quiet house, a little bit of peace leaked into the crack in my heart. For a moment I felt as joyful as Tommy and sister Sue on Easter morning with their baskets full of Easter joy. Whatever her limitations, my sister did remember me. She remembered the sister from the recent past, the one I was trying to be. That gave me hope and the courage to keep trying to be part of Margaret’s life.

Things certainly hadn’t turned out the way I thought they would. But some things were much better than I could have ever imagined. We never quite know what lies up ahead. All we have are these minutes and hours we are living right now, and we have to construct our happiness and our cures out of what we’ve got in our own pockets. Margaret had helped me to see things differently and to understand distinctly how we each need to make our own way. When I thought about my sister and our ever-changing lives, I thought about that old saying about the lemons. I thought to myself, If life gives you sheep, sometimes you just need to make hamburger.