PONDERING ALL OF this, I moved my hose to the rose-bushes in the front of the yard and aimed at the roots to try to keep the water off the leaves. They’d been here when we moved in, eight bushes all in a tangle of thorns and weeds and broken shoots. I left them alone for the first year as we got settled in the house. In the spring I gave them the pruning of the century, or at least their first pruning of this century. I’d spent hours hunkered down on my hands and knees cutting back the dead wood, ripping out grass and weeds, whittling the crowded stalks down to a healthy few. I got my hair tangled in the branches and cut my arms on the thick thorns. When I’d finished, I stood back to look at what I’d done and felt a rush of panic. Although I felt I’d been careful in the choices I’d made, the plants just looked butchered to me. I wondered if they would ever come back. But I waited and prayed and watered them, and now here they were—gorgeous, exploding with healthy growth and enormous blossoms. I felt vindicated. But mostly I just felt happy that they were so alive. That was something I’d learned about the benefits of starting over, of trying again when I thought something was impossible.
MY DRIVE TO Spokane, Washington, was just under three hundred miles. That was four and a half hours of straight driving, with a coffee stop for me and a pit stop for Dizzy the dog. It was 10:00 PM before I pulled up in front of my brother Larry’s house. We visited for a while, and then I headed out to sleep in my camper van with the hound. I woke up the next morning in front of Larry’s house, looking out on the mild suburban landscape of the town I was born in. I was parked about a mile from the house I grew up in. Ponderosa pines swayed overhead in the weak sunshine. I climbed out the side door of the VW and moved stiffly toward the house with hopeful thoughts of coffee. A neighbor appeared to be staring at me as I shuffled up the driveway and into the house, but I was probably just imagining things. I had grown up thinking everyone was always staring at us. That’s because they usually were.
MY SISTER’S DISORDER overshadowed every major event in my life from First Communion and eighth-grade graduation to my first day of college and my wedding. It’s fair to say her autism loomed over me even at my birth. On my twenty-seventh birthday I sat across the table from my mother with a question on the tip of my tongue: What was happening in your life when you were twenty-seven? I wanted to know. She was that same age when I was born, her last child. I wanted to know what she had been thinking about as I floated there within the curve of her belly. What did you think about me? I wanted to ask. What did you say to me when it was just the two of us alone? But I never got the chance to ask. My mother was deep in conversation with my friend as we waited for our dinner to come, and I heard her say, “Margaret was diagnosed with autism in fall of 1970. She was just three years old.” I felt sucker punched. My mother never noticed. But to me, my story now went like this: my birthday is the anniversary of Margaret’s autism.
AT LARRY’S I waited until I was sufficiently caffeinated, and then I drove north on Washington Street, the north-south artery that divides Spokane in half. I passed through a revived downtown area, past River-front Park, the site of Expo ’74. The bridge took me across the Spokane River and up the hill into the Gonzaga University district. We went to high school near here, all of us but Margaret. Two of my siblings went to the university, and Larry finished law school in this neighborhood. Ann and Larry got married here, and I learned how to do a beer bong. Mike had narrowly avoided wrecking the car here on more than one snowy morning as we headed to school. This neighborhood had always been a kind of proving ground for our family in one way or another. Even now, I half expected to see a younger version of my brother Larry speeding down Hamilton Boulevard with Mike in the passenger seat and me in the back with Vanessa McRae.
By the time I pulled up in front of Margaret’s house it was about 10:00 AM. I got halfway up the walk before the door banged open and revealed Margaret’s large frame. “Hi, Eileen!” she said. Here stood my big sister, smiling and happy to see me. What a relief. She was wearing the tan hiking pants I had bought her the previous summer and a short-sleeved zip-neck top I had picked out for her. When we had gone on a hike the previous fall, she’d been dressed in linen pants and a long-sleeved shirt. Neither had held up well in the dusty heat. Today Margaret was also sporting a raspberry fleece coat that matched the shirt. Her hair had been cut recently. She looked great, and she was smiling. Thank God.
“Hi, Eileen!” she said again and embraced me. My big, soft sister. It was a quick hug, but it was a hug. Not the no-arm lean-in I’d had last fall, when she seemed less sure about wanting to go anywhere with me. That day she would barely look at me and kept muttering under her breath, making weird faces, and avoiding eye contact when we went to REI for some rainy-day shopping.
A young woman stepped out onto the porch and introduced herself. This was Alicia, the one who had urged Margaret to call me. New to the staff, Alicia was Margaret’s “focus person,” the staff member who was most tuned in to my sister’s daily life and tried to help her do the things she wanted to do: find a job, go swimming, run errands. Alicia was smart, cute, and genuinely warm. “Margaret was so excited that you were coming this morning,” she said. And later, when I asked how Margaret had been and what she had been up to, Alicia filled me in. Margaret obviously liked her very much, as she smiled and hugged Alicia good-bye before getting into the car. As I left, Alicia told me, “I just love Margaret.” I wanted to believe her. I could see how my sister would love her back. I needed to believe that Margaret was living with people who really cared about her well-being, who saw her as a person, an individual.
It was hard to believe, because I’d met a lot of Alicias: kind young women and men, often students, who did this job well and eventually moved on to better-paying, easier careers. I wanted someone to stay and be there for Margaret always, like family. But how could I expect that of a complete stranger when I couldn’t do it myself ? And why was I still feeling guilty that I was not there taking care of Margaret? No one had ever asked me to, and I was certainly not qualified in either temperament or training. But I had taken care of her when we were growing up, as a matter of course. I was her big little sister, but I still felt responsible for her as an adult, and I felt guilty. As much as I was trying to accept that it just wouldn’t be good for either of us, the survivor’s guilt was hard to put down; I’d gotten used to the feeling of carrying that guilt on my shoulder, the way our dad used to carry a case of beer down the dock to our boat.
Margaret had now galloped down the walk to the van. Dizzy wagged her tail in greeting and got a gentle pat on the nose from my sister. We both climbed into the van. “Hi, Eileen!” she said again and gave the door a mighty slam. The van rocked from side to side as I remembered, again, that Margaret closes every door as if she’s the Incredible Hulk. “Hi, Margs!’ I leaned across the gap between the seats to give her another hug, still struck by her physical presence. “You look so pretty,” I said, “Who gave you that coat?” She looked down at it and rubbed the fleece with her finger. “Ann,” she said confidently, meaning our oldest sister, which I doubted.
“You want to go for a hike?” she asked me, but it wasn’t really a question. What she really meant was “I want to go for a hike.” But I responded anyway. “Yes, I do,” I said, and I pulled out my notebook.
We are an anxious people, we Garvins. On this day I was anxious because it is my habit, and my sister was anxious because she has autism. Or maybe it had nothing to do with her autism; it was just the family quirk that made her disorder harder to bear. Whatever the case, for both of our sakes I had made a list of everything we would do that day. Both Margaret and I have always been compulsive list makers. Margaret would fill an entire notebook when something was on her mind, lists of words like “Lake” or “Lunch” or “Mike.” Ladders of words climbed up and down the lined pages. My day planner, less linear, always looked like a key piece of the plotline from the movie Memento. But I figured if I planned out our day and wrote everything down, we could bot
h refer to it if either one of us started feeling nervous. I’d written “Eileen and Margaret’s List” at the top. I handed the notepad to my sister and asked her to read it. She scanned the list and swept a slender finger under each item as she read it.
“Home. Store. Hike. Lunch. Shop. Home!” She ended with a flourish.
“Where are we now?”
Margaret looked out the window. “Home!”
“What’s next?”
She looked at the page. “Store!”
“Right! We are going to the store to buy some snacks for the hike.” And so we did.
Huckleberry’s Natural Foods store was on the south side of town. I was a little nervous about this stop, because the store was also on the way to my parents’ house, and I didn’t want Margaret to think that that was where we were going. Or to insist on stopping by and derailing my plans for the day. But she didn’t mention it as we flew up the hill and pulled into the parking lot at Huckleberry’s. Margaret was out of the door almost before the van stopped moving and halfway into the building when I caught up with her. I grabbed a basket, which I asked her to carry. Huckleberry’s was crowded. Margaret charged through the late-morning throng with purpose, as if she’d won a timed shopping spree. This is just how she moves. Mostly people didn’t notice. Occasionally someone sensed her moving up behind and jumped out of the way, looking startled or irritated. I kept a stupid smile plastered to my face, as if this would somehow ameliorate any trouble. “Hi! We’re friendly! Just a little weird!” That’s what my smile said.
Luna bars, trail mix, apples, and water. With our items quickly gathered, Margaret banged our basket down on the counter. The cashier quickly shifted his gaze to me, because my sister didn’t make eye contact. But he was friendly, nonetheless. I paid. I said thank you. We left.
“What’s next, Margaret?” I asked my sister.
“Hike!” she said. Now she was grinning.
INTERSTATE 90. IT’S one of the longest in the country, stretching from Seattle to the Midwest. For thirty years my family had used about thirty miles of it to get back and forth from town to “the Lake,” which was what we call Lake Coeur d’Alene. The section we’d always traveled took us from downtown Spokane to open land that used to look like country: cows grazing, the occasional horse, homey old farmhouses under the shade of tall willows. Any semblance of country between Spokane and Lake Coeur d’Alene had disappeared during the 1990s. First came the outlet malls, and then housing developments sprang up on the shoulders of hills like acne on a teenager. The traffic was now constant and thick. I wondered where all these people were going and where you might work if you lived out here.
When I was a kid, the open space out here would lull me into a doze by the time we reached our marina. It was a beautiful transition time, taking us from our busy lives in town to the quiet tempo of lake life. All seven of us would pile into a Chevy van with cats and dogs and the birds in a birdcage and food for a week or more at a time. We’d drive to the marina, load the boat, and speed across the short stretch of water between the dock and our place, unload the boat, and then there we were. Our own line of sandy beach, our splinter-inducing dock, deep cool water, and the quiet woods behind the house. Since 1973 this had been our gathering place, this secluded spot with no road. Anyone who came had to arrive by boat and stay after dark. A paradise or a prison, depending on your take. Often for me that depended on what kind of mood my sister was in and what kind of reaction her actions incited in the rest of the family
As I mentioned, we’d had some wonderful times at the cabin without Margaret in the past couple of seasons. My father wrote me an e-mail after the first experiment saying he’d never had a better time. He didn’t mention the fact that my sister was not there. But the rest of us siblings had felt more relaxed because we weren’t holding our collective breath all weekend. Maybe my dad felt that, too. As for my sister Margaret, I truly believed that being out there with all of us had made her unhappy. Not when we were children, but when we were young adults. She never made it through a visit without completely melting down. And when she wasn’t upset, she was withdrawn, listening to her music and rocking, trying to build a wall against the rest of us. On a normal Saturday in July there might be twenty people in the place, all talking and laughing, playing music. How could this have been fun for Margaret? How could she not have a blowup? When I thought of it that way, it made sense to me that my sister was so calm, so quiet when I spent time alone with her. And I could believe, during these hours, that this was a good time, a period of transition into something new and better for all of us.
MARGARET AND I rode along and felt the road move under the tires. Neither one of us said much. But it was an easy silence. Easier, anyway, than it had been in the past. As we neared the exit for the town of Coeur d’Alene, I got nervous. We would pass our marina on the way to the hike I’d chosen. Even though she said she wanted to go hiking, this could be disastrous, since disrupting Margaret’s routine has always been a sure way of setting her off. I was picturing myself driving east on I-90 with my sister wailing and thrashing in the passenger seat as I tried to keep the van on the road: “You’re going to the LAAAAAAKE! You’re going to the LAAAAAAKE! Aaaaaaaaah!” over and over again. That’s what I saw in my head. That’s what I used to see all the time. My sister. Freaking out and inconsolable. (And a driving hazard, I might add.) But I was wrong again. We passed right by the exit to our marina, and Margaret simply turned her head to watch it go past.
Ten more miles of I-90. Three miles of Highway 97 south. We pulled into the trailhead and climbed out of the car. I had brought my CamelBak for Margaret to wear and loaded another pack with water, snacks, sunscreen, and a map. My intention was to make sure Margaret, a novice hiker, was as comfortable as possible so that she’d have a good time. Boy, did I feel prepared. I managed to get the CamelBak straps over Margaret’s slender shoulders, but the waist strap just wouldn’t meet in her Rubenesque middle. So the CamelBak was going to have to hang from her shoulders. She seemed okay with that.
“Ready?”
“You’re going hiking, Eileen!”
I couldn’t believe how smoothly things were going. What had I been worried about back there in my front yard?
“Let’s go!” I said to Margaret, and to Dizzy, who leaped in the air and licked my nose. I turned my heel and headed toward the trailhead. We were off to see the freaking wizard!
Then behind me I heard Margaret say, “Lunch?”
My heart sank. I knew I’d forgotten something.
“Margaret, what did you have for breakfast?”
“Froot Loops!”
Terrific. Not exactly the breakfast of champions. And that had probably been about five hours ago, since she usually rose at dawn. So I handed my sister a peanut butter Luna bar and hoped for the best.
It was a climb. The trail moved up through tall shadows of Ponderosa pine. Snowberry and thimbleberry bushes bordered the soft track of dirt and needles. Wild lupine, yarrow, and daisies splashed the green with color. Dizzy bounded up the trail and into the bushes and circled back to us over and over again, smiling her enigmatic canine smile.
My sister broke a sweat within the first few minutes. She wasn’t huffing and puffing, but she was breathing hard. I slowed down. We took a break in the shade. I showed her how to use the CamelBak to suck out the water. We are both healthy perspirers, and Margaret’s underarms were already soaked. So were the straps of my CamelBak. I had not foreseen this element in sharing gear until now. I didn’t know what disturbed me more: the fact that my big sister was sweating all over my pack or the fact that she was wearing a pack that I had sweated all over. I tried to think about the Shasta daisies to get my mind off the bacteria.
We climbed. We rested. We drank water. There was no one else on the trail. It was absolutely quiet but for the sound of our feet, the jingle of Dizzy’s collar. Every once in a while we heard a voice float up from the lake below, the peep of a chickadee, the musical call of a flic
ker. As the crow flies, we were only a few miles from our childhood lake cabin, and yet we’d never been on this trailhead before. The smell of the woods and the water was familiar, built into my memory of summer and childhood. I imagined it was familiar to Margaret, too.
WE BOTH WANDERED freely in those woods when we were children, me with a pack of brothers and cousins. Margaret was more apt to wander off by herself. When we were very young, my mother had clipped a rope to the back of Margaret’s life jacket to make sure she didn’t head off by herself. But it didn’t take her long to figure out how to take it off if she wanted to. She was quick, smart. Margaret the Fox, my parents called her. She’d get focused on something and wouldn’t seem to hear people calling her. She went missing more than once, which was terrifying to me because of the look it put on my mother’s face. Her absence would put the household in an uproar. I never forgot the sound of fear in my mother’s voice as we hiked the hill behind the house calling my sister’s name.
But just as she always stopped hitting and spitting and pinching when she felt like it, Margaret always showed up eventually, usually before dark. Years later we discovered that she had befriended the Ulmans, the cookie-making couple down the bay. That must have been where she was much of the time. Margaret and the Ulmans had first met in their kitchen one day after she had let herself into their house to make toast. Margaret didn’t speak much then, so she would have been unable to explain herself. Apparently they welcomed her just the same, let her make herself toast, sit and eat it, and leave silently. She came back later to make cookies. Another one of her secrets.
How to Be a Sister Page 15
