I came in my long johns the other morning… some wet dream that this whimsical loneliness kicked up again. It’s embarrassing enough to cream yourself at almost 33 years of age, but to have your own father clean you up while getting you dressed? I suppose there are times when I don’t even know how I should feel. I can’t wait to have the entire surface of my palms press flat against the hardness of the floor. If I was free of this dystrophy, I promise that I’d do push-ups every day and surrender to the cool sensation of sweat dripping down my skin, burning red. I promise that I’d regain my muscles, one fibre at a time. “I go places in my mind,” I told my nurse recently. And I do. Whenever my eyes are closed, I always whisper to myself, Run. I see dark grains running down, as if I’m looking towards the road while running. My journey ends as I stand in front of a faceless silhouette of the girl without a name, only to find myself awoken in another nightmare come true. I love life, but hate the death that my body embraces. Oh, how I wonder what it would be like if I could walk, sitting by the ocean with the sounds of crashing waves from a distance and feeling the grains of sand running between the blades of my fingers. I’m grateful for my thoughts that float about the aura of darkness, liberated from the perpetual silence looming in moment’s time. With summer drawing closer, icy breezes still consume my face oft, and I suffocate in it, gasping for air. Shuteye enfolds me once more, and this heart of mine is near the Pacific. I’m kissed by the warmth of the mid-afternoon sun. It is then that I remember to breathe. It is then that I whisper, “Duchenne, I’m not afraid.”
Posted on: Wed, 14 May 2014 04:52:14 +0000
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