…It’s like a jar cracked open. I pour the perfume over your feet. It runs over my alabaster hands and makes your skin slick with the fragrance of it. This story is a sound. It comes from my lips as I kneel on the hard ground. It is a sob and a groan and a joy, all at once…
This is the beginnings of a memoir about my younger brother, Tom, now 25 years of age, who suffers from autism. In my effort to capture and process the beauty and the pain of his life, this work started pouring out of me. This is my attempt to explore the debilitating disability he suffers from and offer an insight into a world that is so often misunderstood.
It’s like a jar cracked open. I pour the perfume over your feet. It runs over my alabaster hands and makes your skin slick with the fragrance of it.
This story is a sound. It comes from my lips as I kneel on the hard ground. It is a sob and a groan and a joy, all at once.
So it’s a story I’ve been wanting to share with you.
I always have plans of how I’m going to say it. I’ve woken up in the night reworking words, writing scrawl in the notepad next to my bed, half asleep and blinded by the dark. It never has that same glow-sound when I read it the next morning. I scribble it out and wait for the next dream.
No matter, it’s time I share it, eloquent or not.
It’s in the evening that I commence this, I’m tired and my brain is heavy from a long day. I’ve thrown off my shoes and taken out the garbage and the windows are open. It’s pretty quiet, but I hear singing in an unknown language from the apartment below me – I think they’re in their garden watering their plants in this pink twilight. I wish I had a garden.
I want you to see my apartment. It is all white-walls and cheap paintings. I have that magnetic poetry on my fridge and on eluding-sleep-nights I make new musings with the words. I think they’re pretty funny.
There are about a million teacups in the cupboards of my kitchen. I pick one depending on my mood or the type of tea I’m having. If someone comes over I get out my great-grandmother’s china ones. They are white with sweet blue periwinkles painted on them.
I could procrastinate and read the book that’s sitting on my lounge right now. Perhaps. But I know I can’t do that tonight. I need to start this. I have many books on my shelves. You’d be impressed.
I love the way that this place gets an amber warmth from the lights on these winter nights. I might light a candle that smells like French pear and close all the blinds and pretend like the world stops when I close it out. I do know it doesn’t. It’s right back whirring when I wake for work the next morning. It is a nice thing to dream, though.
I’m sorry for my tangents. I just want you to imagine you’re here too. Smell the candle, feel the slight chill to the night air. Go pick a cup if you want, I’ll brew some tea. And then I reckon I’ll begin.
* * *
Tom was born on a Tuesday. It was full of light. And I remember sitting on the sidewalk outside the hospital with ice-cream slithering down my arms – it was hot for September. My grandmother was sitting with my older brother and I and I remember trying to count the concrete cracks around my feet but I couldn’t count very high. My grandmother was telling me stories as the sun stretched my skin. I laughed at the way she animated her voice to play characters.
And when I saw him for the first time everything around us faded. He lay there, pink and staring at the ceiling, and I was in love. His name rolled around my mouth as I pressed my fingers into his plasticine skin. Beautiful.
There are pictures of us with my arm around his neck, his eyes bulging in my headlock. I am smiling at the camera showing my tiny teeth and squeezing with all my might. I loved him ‘til it hurt. I would sing to him over his cot, come sliding up the floorboards as soon as the sun broke the nights and sing through the bars. He would turn his head in my direction as he listened to my sound.
In the afternoons, we would lie on the floor and I would crawl over to him and press the top of my head to his. I would tell him the stories our grandmother had told me and he’d wave his arms in the air. I would copy him.
He didn’t talk for years and his lack of eye contact was an alarm. He would wander into the kitchen and point at a pictures in a Woolworths catalogue and then point to the pantry. That’s how we knew what he wanted. He would make sounds and I would translate. It was like I knew his thoughts. We would play our secret games in the family room and I could understand him fully – I am thankful for that gift.
He was three years old when I remember my mother weeping as she cleaned the shower. I was too young to understand then.
He’s silent a lot these days. He has words now but does not use them too much.
I hear him walk around the house and his socks make a shuffling sound on the tiles. Sometimes he hums. It’s a faint sound, like a breeze through the windows. I like to hear him talk to himself – he does this when he’s watering the garden. He talks about the football and the weather and I wish I was on the other side of that conversation.
* * *
It was the beach up the road that called us. Spoon Bay. It was magnificent: arched sand that stretched from cliffs to rock-pools to endless, endless ocean. And oh in the summers Mum would pack up a picnic and our towels and spades and buckets and hats and sunscreen and we would tumble to the beach and then into the water and my older brother and I would float and somersault and grab at slithery legs, pretending to be sharks. Tom would stand at the edge, afraid of the waves. He would cling to our mother and back slowly away from the noise. The sound, it seemed, echoed in his ears and rumbled in his head. It was a groan, a warning, and he feared it.
It has always been noise for Tom. He can hear decibels unknown to me and cringe at the pain they cause. Off-key instruments frighten him. Children screaming. Sirens. Animals. He is worried by brown pianos because they are apparently much more likely to be out of tune. He can tell you the key of any sound. He’s brilliant.
He slowly learned the ocean after a while. The feel of the sand on his feet was still unpleasant and the noise was a roar in the shell of his head but he touched it. He would be a peanut in my father’s arms, slowly conquering the waves as my father jumped over them – small Tom against the sea.
I drove past another beach this morning on my way to work and amongst the traffic lights and changing lanes I caught a glimpse of a grey ocean. I was thinking of the sadness of empty waves when the winter comes, how they curl in on themselves to no admiring eyes. The memories of us all at the beach years ago are eternally bright. I can still smell the sunblock and feel the salt-sting of my skin. Yet it is always the fight in him that stands out the most, that tiny child facing those fears so much he swam through them.