Neal Cresswell for The Globe and Mail
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When I think about my childhood, I think about locks. Everything with a door had one: room, cupboard, shed. Most of my friends with little brothers complained about hair pulling, teasing and Barbie decapitation. My little brother, Michael, was obsessed with cars and could not understand why, at four, five, six years old, he was not allowed to drive. If left alone in the bathroom, he would deshelve all products, smearing expensive creams and lipsticks on the mirror. He once "fed" chocolate bars to my goldfish until it went belly up. To us, this was everyday mischief – hence the locks.
At seven, I learned to say "pervasive developmental disorder" (PDD) and "autism spectrum," words that would change everything. And nothing.
When Michael, the youngest of four kids, was diagnosed, all of the abnormalities my parents had taken note of – the slow development of speech, inability to follow simple instructions, explosive tantrums – finally had a name. But nothing about that label altered the challenges we faced daily.
Life went on. We learned a new dictionary of words and gestures to interpret his needs. When he asked for "ga-bum," everyone knew to squirt a healthy amount of ketchup on his plate. When his eyes lit up at the mention of a bike ride, we registered it as "yes" – a word he could never say. When he repeated "goo' boy, goo' boy," we reassured him that yes, he was good and there was no need to get upset. When he started biting the wrist that remained swollen and scarred from repeated self-abuse, we knew to back away, give him space and pray the situation wouldn't escalate into the destruction of property.
And, we locked doors. When people visited, purses and keys were secured in a cupboard. Michael was lightning-fast, especially when it came to all things car-related. Turn your back, and he would snatch keys, match them to a vehicle, climb in and slam it into reverse. My parents' van got the brunt of the abuse when the doors (left open) were snagged on the side of the garage and torn off as he backed out. He could not be left alone for any amount of time. Ever.
But Michael's shenanigans also provided a chance for laughter. Compulsively yet selectively tidy, he would race around putting things away, often in places where you would never find them. During one phase, he hid all of our shoes in the deep freezer. With energy right from his 6 a.m., built-in alarm clock, he was usually exhausted by dinnertime, falling asleep in his plate of spaghetti more than once. Convinced that Michael was only replying "no" to every question because he didn't understand anything, one of my siblings tested him by asking, "Would you like a million dollars?" Michael held out his hand to receive the money.
And, though nonsensical or just plain repetitive, he was always in a state of constant chatter. "Na, Na," he would say, pulling on my sleeve and using the only part of my name he could manage. "Doyouwanttogotothemall? Doyouwanttogotothemall? Doyouwanttogotothemall?" Every sentence was spoken as one word and repeated until I wanted to scream. He would probe strangers about whether they had to go pee, or use one phrase that sounded an awful lot like he was offering them a beer. With a flushed face, I'd usher him away before they could reply. In the car, at the house, in my room: he was always this constant and vocal presence.
There were times when it all just got too much, when his relentless fountain of babbling threatened to drown out my sanity. In those moments, I wished for silence. For the opportunity to hear my own thoughts. For him to just. Stop. Talking.
And then he did. In adolescence, Michael began retreating into himself. His vocabulary shrunk. Now, at 26, there is silence. Some visits I cannot even get him to look at me. That light, that excited chatter, has been buried in a seemingly unsearchable place. Michael does not speak, except in very rare moments. When he does, we cling to the words like glints of gold panned from a river gone dry.
I know, logically, that his silence isn't the result of frustrated wishes I made but didn't mean. I know I shouldn't feel responsible for not seeing that, one day, the window into my brother's thoughts would be closed off almost completely. I know it's not my fault. I'm not that powerful.
And yet, guilt pokes at me. We complain about life's annoyances every day: The boss who keeps you past the 5 o'clock chime; the friend who won't stop calling to vent; the significant other who wakes you up with his off-key shower serenade.
When they slip away, you realize how important those notes were to the rhythm of your existence.
My mother used to sing to Michael, always the same tune. "You are my," he would repeat, prompting her. "Sunshine," she would finish and then sing the rest. Now, I try to mimic her voice but can barely eke out a smile from him.
My little brother's personality went from those intense rays of sunshine to the muted sky of grey clouds. There is still beauty in his silence, but it's harder to feel.
We need to be careful what we wish for, even in the small moments of desperation. Except in memory, there is no way to go back through a locked door.
Dana Marie Krook lives in Toronto.