The kids are alright

I’ve been awake for a while when I hear the bedroom door down the hall slam for at least the fourth time. Before that, thudding feet across the thin carpet, a body, not petite, heaved over the mattress — its ancient springs crying out in complaint. Whispering, a wild peal of laughter and then the slam of the door, rattling the 100-year-old knob. I hear Margaret’s voice two doors down, choked with mirth: “You’re not Uncle Michael!” And then she laughs loud and long to herself in the darkness.

I’m exhausted, but as I open my eyes to the darkness, I pray to the sweet Baby Jesus for morning. Because at least then, this hellish night with my big sister Margaret and her autism, the first such night in a decade at the family lake cabin, will be over.

Some hours later, my older brothers and I slump around the dining room table like shipwreck survivors. Outside the large picture window, the September sunshine dances across the dark green surface of the lake. Small waves race up the beach, darkening the sand. My eye is drawn to the pair of Ponderosa pines towering over the world at the foot of the dock, and I think how I’ve lived a fraction of their 400 years. They are part of the reason the view seems timeless, hardly changed in the four decades we’ve been gathering at this old lake house in Idaho. But what has changed is that we have all grown unaccustomed to and far too old for the sleepless night we’ve just endured.

I curve my hands around my coffee mug, comforted by its warmth. I know without looking that I’m puffy-eyed and pale. Mike cradles his face in his hands. Larry’s hair, thick as ever, stands on end like Radovan Karadzic’s.

“I slept like a log last night! Said nobody on the second floor,” he chirps. Mike snorts, and I laugh so hard I want to cry. Ann, the eldest, looks amused. She also looks rested. She slept downstairs, as far from Margaret’s nocturnal shenanigans as one could get.

Margaret, though, doesn’t say anything. She’s waiting patiently for breakfast. Sitting there with one finger hooked through her mug of hot chocolate, her head leaning on one hand as she watches our mother fry bacon, she’s a picture of calm. You’d never suspect that she’d disrupted our sleep last night, for our collective childhood, and well into the first 30 years of our lives. Unless you knew her.  And the last 24 hours have reminded us that yes, we do. Boy, do we ever know Margaret.

We were five children born in six years. Margaret came second, and was diagnosed with autism at age three. This was 1970, and the affect it had on our family was devastating. When I read stories about autism today, it seems to have some kind of social context. People know what it is and how it’s treated even if there is still no known cause or cure. It’s generally understood that autism, a so-called spectrum disorder, presents itself uniquely in each person. Everyone knows someone with autism, or knows someone who does. Given that some estimates say it affects one in every 100 children, it’s easy to see why the word autism is understood, unlike when we were children and well-meaning adults gently corrected me; surely I meant my sister was artistic. The fact that autism is more commonly recognized, I can only hope, helps soften the blow for families now.

In my family, autism was a hammer. Our childhood was dominated by Margaret’s limitations and, more significantly, her frustrations. Unable to communicate her anxieties or questions, she would quickly escalate to screaming and throwing herself on the floor. Her magnificent raging could last for hours. When she was a little girl, it was frightening. When she hit puberty, it was terrifying. My parents inevitably took sides — Dad angry and Mom doing damage control, while the rest of us stood in the background, bewildered and scared. Back then I thought Margaret was angry, but I know now that she was anxious and afraid. And as an adult, I regret that I didn’t see the difference. It might have helped us both.

Autism aside, our household of seven was a state of barely controlled chaos. My earliest memories are of rushed mornings — dressing, brushing teeth, shoveling Cheerios, trying to stay out of our father’s way — he the chronically sleep-deprived obstetrician. A first and most vivid memory is the sound of my older brother Michael crying in the dark in the room he shared with Larry as we got dressed for school. I was 6 and I adored him, but I remember thinking wearily, “Oh. Shut. Up.”

There was an endless pile of laundry, drawers that never opened or closed properly, a snaky snarl of mismatched socks shared by we three girls. Our wardrobe was simplified by matching plaid uniforms of Catholic school. The refrigerator was a museum of blue macaroni and grey string beans, and God help you if you were in the bathroom when it was Dad’s turn for the shower. We strained our eyes at the tiny television set at the far end of the family room for two hours every the evening, but always did our homework first. The static fuzz of Dad’s Monday night football over Margaret’s blaring “Carmina Burana” in the living room and the swishy whisper of the pressure cooker in the kitchen. The smell of onions and Jergen’s soap. Underneath it all was a constant and terrible feeling that things would never be okay.

We managed. Later we could all admit that life with Margaret nurtured a collective, warped sense of humor that makes us who we are and also knits us together as family. But it was no picnic.

Sleeping in two upstairs rooms, we children shared Margaret’s nighttime unrest. A small figure in a flannel nightgown, she’d skitter down the dark hallway and thunder down the stairs spurred by an urgency we couldn’t understand but were all oppressed by. She was usually checking on her records — hundreds of albums in dog-eared covers crammed into a skinny kitchen closet. Their spines had become unreadable long ago, but Margaret knew them each by color and feel.

Flipping on the kitchen lights, she’d yank open the door, hunch over and thumb through the collection until she arrived at the record in question, tug it out, inspect it. Then she’d shove it back in, slam the door, flip off the lights and sprint back upstairs, usually scolding herself aloud, never quiet.

The rest of us lay upstairs listening and gripping the sheets in our fingers and toes. Sometimes one of us might go after her, which we all knew was useless. Never once had we deterred her from completing her mission. Not once. We were like sand and she was the ocean. Boom. Crash. Didn’t even seem to see us.

Our anxiety came from knowing that she’d wake up our father and he’d come roaring up the stairs in his underwear. This action was also futile, but he would succeed in waking and scaring anyone who’d had the incredible luck of sleeping through the first phase of Margaret’s nocturnal ramblings.

Then he’d stomp down the stairs and slam his bedroom door, swearing. Margaret would chastise herself into her cupped hand rendering a perfect imitation of our mother’s voice. “Now you go to bed, honey! Now you be quiet! It’s time for bed!” And then the impulse to check the records would seize her, and it would all happen all over again.

Years later, our memories softened and this whole Laurel and Hardy routine became something we’d laugh about, my siblings and I. Remember that time Margaret threw a meatball and it zinged Dad’s ear? Remember when she bounded naked into the kitchen and Fr. Kuhns was over? How about the time she ran up on stage during your choir concert? Remember when she threw up all over the table at The Old Spaghetti Factory right after we paid the bill? Remember?

Funny when we were sitting around on the side porch drinking beers and recalling days gone by. Not so funny during a sleepless night we were all out of shape for. At least we’d each grown smart enough, or weary enough, to realize that getting out of bed to reason with Margaret would be useless. Last night we’d all just lain awake and listened to her charge up and down the hall, this time checking on her toiletries bag, her towel or something else that had caught her eye in the bathroom. The checking soothed her. Dad, twenty years into retirement, slept through it all.

When it is finally morning, I hear Margaret run down the hall and blast water into the red claw foot tub. I’m pretty sure the bathroom door is wide open and my big sister is perched in the tub as naked as a peeled potato.  In the past, I would have jumped out of bed to try to manage the situation — shut the door, remind her about shutting the door, making sure she had a towel and clothes before she opened the door. But now I just lie in bed and think, “Oh, who the fuck cares. It’s just us.”

It’s just us. The fact that my entire family had gathered at the lake house this weekend was as precious as it had seemed unlikely. Ten years ago, after three decades of not talking about the pressure cooker of our childhood with Margaret, my family exploded. Someone said the wrong thing at the right time and it all came pouring out. It wasn’t pretty. It wasn’t ever resolved, but it was inevitable. We survived. We all moved on. Margaret too.

After the blowup, Margaret didn’t come out to the cabin anymore. And suddenly, the person who had held our childhoods hostage with her incomprehensible anxieties, her constant need for sameness and her fierce grip on our parents’ attention was suddenly absent. She left a hole. What was our family about if it wasn’t coping with whatever Margaret was inflicting upon us — laughter, anger or something in between? We didn’t seem to know.

My parents came sometimes, but less. My siblings and I returned in twos and threes, always happy to be together but feeling orphaned. And now, somehow, we were all here together on the Labor Day weekend of a gorgeous summer that just wouldn’t quit.

That Margaret had agreed to come was a wonderful surprise because at some point over the years she’d made it clear that her own house and her quiet routine were easier for her to manage than being among all of us. And that made all the years we’d struggled to include her somehow even sadder to me as I realized that being with us was harder for her than we could have ever imagined.

I’d watched her at dinner the night before, monitoring herself, moving into the adjacent room when we got too noisy, finding a way to be with us, despite how disruptive we were to her life. This was one hell of an irony I finally understood — how hard we made things for her. But she came, she stayed, and we had that time together. The fact that she kept us up all night didn’t diminish the grace of that.

When the bacon is finally ready, breakfast happens in a scramble, as is usually the case when my sister is involved. My parents gather their things. Larry will take them across in the boat and they’ll drive Margaret to her house, where we know she will holler goodbye and slam the door in their faces with a cheerful grin. “Ba-bye! Thanks for coming!” she’ll yell.

Before she leaves, I insist on a group photo. Front porch. Everybody! We never remember to take pictures in this family, I say. When I see this photo, I remember why. We all look terrible.

Mike is in his scary old bathrobe looking like he might not have anything on underneath. In mismatched pajamas, I look like Dad, who is not bad looking but is a man and in his 70s. Larry’s Slavic hair seems more salt than pepper. Ann appears older than I think she should, like someone’s nice aunt, not my tiny older sister who once wore headgear to bed and shopped in the children’s department through high school.

Margaret, on the other hand, looks pretty good. She took a bath, after all. Her thick hair, which she’s started coloring, stands on end like a hedgehog’s and she has a great, phony smile on her face. “Smile!” she says. We crowd in close, clasping hands, and just before the click, Margaret says, “Now, you shut up, Margaret!” in a perfect imitation of my teenage voice. Ten years ago, it would have made me cry. Now it makes us all howl. She grins. She lets me kiss her cheek and then she gets in the boat to go home. We all say goodbye. And three of us stagger back to bed.

In the years after the family blew up, Margaret made me realize that loving someone has very little to do with the other person and whether or not they ever absorb how you feel about them. I’ve always loved my sister. And even through decades of frustration, I knew that. I had no more control over loving her than I did over her crazy behavior. She was the center of everything in our household and the center of my life, for better and worse. I was conscious of her before I knew myself. My big sister — graceful and silent one minute and falling to pieces the next.

I continue to love her in the middle of our lives when I have finally realized that I can never really reach her, that she will never be able to understand how much I care about her and how I wake up in the night worrying about her and that I cry after I see her, every time. Or if she does know any of this, there is no conceivable way that she’d be able to tell me what it meant to her. Instead I try to be patient and kind when I am with her. And remember to be grateful for everything else I have. I have a lot of everything else in my life. In particular, what’s only become clear lately, maybe not even until this weekend, is how damn lucky I am to have my three other siblings.

Our volatile childhood with Margaret left us unprepared for life in so many ways. While we were hard-wired for a maniacal, screaming chase through Costco in search of a missing case of Ding Dongs, we never learned, for example, how to make light small talk with new acquaintances or host a dinner party that didn’t involve someone flinging food from one end of the table to the other. Ann once joked that she got to college and opened her proverbial toolbox and found it empty. How to get a naked, 170-pound-woman into her swimming suit in front of 50 curious onlookers — no problem. But appearing semi-normal at a job interview or on a first date — Lord help us all.

When I was floundering through my adolescence and young adulthood, my brothers and Ann were the only ones who could possibly have understood what I was going through. But calling on them for help would have felt like asking a drowning person if I could borrow his lifejacket for a few minutes.

Somehow we all made it into our own lifeboats. I’m a writer and I make my peace with the world by recording life as I watch it unfold. It’s my way of checking the records, I suppose. Ann teaches the children of immigrants to read English. (“Ah! Putin! Very bad man!” one of her Russian first graders recently related.) Mike is a scientist who uses phrases we don’t understand like “single nucleotide polymorphisms.” We just nod and know he knows we don’t know what he means and that he’ll let it slide. Larry, a lawyer, deals with people at their absolute worst — divorce, custody battles, lying, cheating each other, but then he goes home and tends to his fluffy rescue kitties and patiently sands the scratches out of the family boat each winter, year after year.

I used to think of these three people as accidental participants in the unscripted drama of my life with Margaret. But now I realize how much I’ve always needed them. At some point, we crossed over the boundaries that defined our relationships as children — the culture of scarcity, sorrow and powerlessness. We became not friends but better than friends because there is never the need for backstory or apology. I now realize how much they are part of my story, which includes my future so much more than my past. Because the past, those years with Margaret, are gone. It has taken me so long to let go of those days. Only recently have I really accepted the fact that the obstacle I constructed my own life around, like a tree growing around a boulder, simply doesn’t exist anymore. And that I, like Margaret already has, very urgently need to move on and not miss out what’s coming next.

This is the flickering home movie of my childhood: Lots of Margaret. But also: when Ann slipped off the dock in April and plunged into the icy spring waters of the lake; Ann moving into her college dorm room and leaving a void in our shared bedroom; her wedding on a beautiful winter evening in a grand cathedral. Larry in high school belting out “Book of Love” on stage in front of a full house in a tiny tuxedo; Larry killing it on the drums in his college band; his perfectly unselfconscious skill at the helm of any boat since he was 9 years old. Mike hunched over his desk, studying chemistry, biology and calculus; the summer he got huge working construction and we realized we couldn’t punch each other anymore; his solitary and patient vigil at the water’s edge, fishing rod in hand, for as long as I can remember. And the movie keeps rolling into the recent past and into the future.

Remember when you got divorced? When your boy was sick? Remember when my house caught on fire and when you lost your job? Remember how I was there, and you were there and we were always all there together, even though we didn’t quite know how to comfort each other?

I love them the way you can only love someone whose name you knew before you knew your own, before you even knew it was love, this fierce, take-no-prisoners loyalty. Mike, now across the world in Israel, stays up late to Skype and listen to me talk about the book I am trying to write; I struggle to understand what he is doing with the tiny, jewel-colored salamanders he’s growing in his lab and why they sometimes have two heads. Larry listens to me weep when my sweet old dog dies, and I worry over him — his job, his health, the teenaged state of his car — like only a sister can. Ann, with three kids, a full time job and a busy life, always picks up when I call. And when things go south, they are the first people I think of.

Nobody tells you that your family can break your heart and then mend it together again. As a 6-year-old, I’d never have believed that those three other children sitting around the sticky breakfast table, spooning cereal into their tired faces, would be the glue to hold the second half of my life together. But here they are, all three of them, on my team and year-by-year growing more precious to me. Having them by my side is like a flashlight in a dark basement as I feel around for the light switch. And underneath it all is the joyful and growing feeling that everything might be okay after all.

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