By Tracie White in The Scientist.
I smile and nod, and he smiles back. It’s like watching the image I’ve created inside my mind of this young man, built out of bits and pieces of stories and interviews and writings and photos, come magically to life. It is easy to like him, and I do like him, right away. Suddenly, the once invisible patient who has no voice lifts his hands to speak.
Whitney points to me with his index finger, then curls it down to meet his thumb creating an O that he crosses with his left index finger creating a Q.
“Question?” I ask. He nods.
With pleading eyes he shows how desperate he is for me to understand, for others to understand, what it’s like for him lying in his bedroom day after day, year after year, sometimes lacking enough energy to lift a finger to press the button by the side of his bed to call for help. Growing agitated, he reaches out and grasps invisible bars in both his fists and pounds them into place evenly spaced two-by-two around his bed. “Your life is a prison?” I ask. He nods. His head flops back, his eyes roll up in his head, and his mouth drops open. “You’re like a corpse?” He nods. For many, many hours of many, many days. He pinches his white skin. He’s not invisible. He’s all too real.
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