November nights are no time to climb trees, but the party, for want of a better word, is stifling, so I have to leave. I can’t leave in earnest, so I escape. Up the stairs, out the bathroom window, onto the roof of the extension, slipping down slates to the eight-foot wall surrounding the house, careful not to trip on the ivy curled atop it, to the tree. There, I climb. I don’t feel the cold. I don’t feel much of anything, as it happens.
For what it’s worth, I stayed with you for as long as I could. I stayed until Mum sent a friend to bring me home.
The tree isn’t so tall, a handful of feet above the wall. It’s stripped bare now, a few crusted leaves clinging to withered branches. A stronger beam makes a natural seat, and that’s where you’ll find me when I need to think, or not think, as the case may be. From here, I can still hear the chorus of family and friends gathered, their voices humming together until I can’t pick out individual words, only tone, only the sopranos and altos of their mourning song.
Special. That’s the word Mum used to describe you. Not disabled. Not “physically and mentally handicapped”. We were never told the name for your condition, so you were simply special. I remember the first time I realised that special wasn’t necessarily a good thing. You were in your wheelchair, and Mum had stopped to talk to a neighbour, so I, six or seven years old and just about able to see over the top of your chair, took over.
No one loved a broken path quite like you. I ran, pushing you ahead of me, downhill, your unrestrained laughter lifting and vibrating like music as your wheelchair bumped and rocked over the dips and hollows of the path. You were still laughing, and so was I, when I noticed the other children. They had stopped playing. A ball bounced, unnoticed, as they stared. They never saw anyone like you before. I mistook their curiosity for horror. For the first time in my young life, I experienced pure anger; not the tantrum of a child, but indignation, hurt. Rage fuelled by a pain in my heart. It made me quiver, jolted through my young body with every heartbeat, as hot and vital as the blood in my veins.
“What are you staring at?” I screamed.
They kept on staring still, until our mother came and brought us home.
Talking about it
I don’t want to talk about it, that’s my problem.
The only person I am interested in talking to is my younger cousin, mostly because he doesn’t talk much at all. For a moment, we are rebellious teens, sneaking into the kitchen to steal cans to drink on the roof. It feels almost normal until he asks if I am okay, and I’m not. Now, his voice rises louder than usual from downstairs. He’s drunk, and I’ll probably be blamed for it, but it won’t be my fault, not really. I can’t be held responsible. Not considering.
I am picking pieces of bark from the tree, stripping it of the protective outer layer and revealing the fresh skin underneath. The bark leaves dust on my fingers, dark lines beneath my nails. It seeps into the narrow lines of my fingertips. I am doing the tree a disservice. It’s not ready to shed. But my nails need to do something or my fingers will curl into fists again.
What were those children staring at? What could they see? Was it the way you rubbed your fingers together, hands splayed, just the tips touching? Was it your wide mouth, the way you smiled? The coroner asked if we wanted your mouth closed. It wouldn’t be right. You wouldn’t look like you.
The streetlights stole the stars. The sky is dense, all black velvet, but I can see those stolen stars peppered like spilled glitter in the city, sprawled past my house. I used to see them and my heart would swell at the sight of these earthbound suns, these man-made fairies making a sky out of the earth.
I don’t feel much of anything, as I said, not now.
Built to last
Before you died, I didn’t know you weren’t built to last. Who would take care of you when our parents died, I wondered. Me? Or one of our other brothers, the ones who could lift you, who fed you without the fear I had that you would choke. They were always better with you, not as afraid of your fragility. You don’t know this, but before our brother left for Australia, he pulled me aside and told me I had to pay more attention to you. The shame is with me still. I didn’t mean to take you for granted. I thought you were here to stay. He asked me how you died, over the phone. I told him I was holding your hand, that I felt the difference when you slipped away. He couldn’t talk anymore after that.
For what it’s worth, I stayed as long as I could, and I would’ve stayed longer still. For what it’s worth, I wished I wasn’t there when it happened, that Mum was there instead, because you would’ve tried harder for her. I know that’s unfair, and that what happened was inevitable, but it’s true. I feel that truth buried between my ribs where my heart used to be.
Painful singing
They’re singing, the party-goers, the mourners, my family. I don’t know the song, but the low, slow rhythm is punctuated by wet gasps. They sing to feel what they are feeling, to highlight it, to throw sharp focus on something painfully raw.
I prefer the quiet. I never heard our father cry before tonight.
Even though I am outside, and I should smell the far away smoke of winter bonfires, the clean crisp of ice, all I can smell is incense. My lungs are full of it. I smell spices and preservatives. It doesn’t smell like you, that soft, high scent of aqueous cream. Every night, Dad lifted you into bed with his Popeye arms, and Mum rubbed the cream so lovingly over your skin, slathering it on thick. What was that other cream, the one like jelly? Lotions and potions for your delicate skin.
You were laid out on a bed because no one was ready to see you in a coffin. The room was small and private, far away from noise and the residents of the centre, but the sun found it somehow, even in November. The weak winter light was thick with dust, little sprites twirling in the air around you. There, I knelt beside you from morning to evening. I stayed with you, for what it’s worth, because I didn’t want to believe it was true. I stared at your chest and willed it to move. Once or twice, I swore it did, but your hands were cold and felt wrong.
Morning hug
Remember that morning when I was the first person awake, and I came to check on you? Sunlight streamed into your room, and you lifted your face to it, smiling softly. You looked at me, and I think you thought I was Mum, because you stretched out your arms for a hug. I walked into that soft cocoon of sunlight and took that hug. Your skinny arms were stronger than they looked, and you held me tight, tighter than people usually hug. We always have reservations, afraid of loving too much, overly aware of the other person. Not you. Your hug was unrestrained. Your hand came to my face and pressed it to yours, and you laughed, small and warm. I didn’t care if you thought I was someone else, because hugs from you were a rare prize for me. I know it wasn’t personal; you didn’t like how my hair felt against your skin. I stole that hug, and I wish I stole more.
In the end, I think you didn’t mind that it was me, after all.
From where I sit, the house looks the same, but how can it be? What will happen to your room? Do we keep the hospital bed? Do we open the curtains to see into your room from the kitchen, a daily theatre to a life and death we need no reminder of?
I press my fist to my chest and will my aching heart to keep working. The night has grown frostier, my exposed arms rising in goose pimples, but I don’t feel cold. The only thing I feel is pain; a hard lump in the base of my throat, like I swallowed a stone and it scratched all the way down and settled in the pocket of my neck.
The hum of voices separates and I hear one word, sing-song, my name. It’s a question, a where are you, what are you doing, come here. I don’t want to go back. I don’t want to celebrate, or mourn, or cry, or smile watery reminiscing smiles. I want to sit here and think about how your laugh sounded. I am terrified I might forget.
Eventually, I will descend from my seat. I will tread carefully across the ivy, clamber onto the slates and slip through the bathroom window. I will receive a hug that is practised and restrained, and nothing like yours. The doctors never told us the name for your condition. There was just you and another child in South Africa who had the same affliction. That’s how rare you were.
I prefer to think of you as special.
