I had watched this documentary years ago called My Flesh and Blood, and there was this boy in it who had a rare skin disease called EB, epidermolysis bullosa. It was probably the most awful thing I had seen as far as diseases went. When I wrote on my subject list “touch” I automatically went back to this boy and how touch for him was a such a different experience then most. That to be held could result in pain.
When mother holds me I wince in pain. It is like a fire searing me to the bones and I wonder if I will cremate. I imagine a cough will propel a plume of smoke and in that second my body will fold in on itself like an empty inner tube.
She tries to be gentle, but there isn’t much she can do about it. In truth she holds me very little because I am so delicate that my skin peels like wet paper from my flesh. When she bathes me, which is daily, to keep the infections down, she has to lift me from my wheelchair and the pain is like hot knives slicing through me. She is steel to my cries, but I can feel her quivering, she hates to do this as much as I do. Oddly, through all the pain, I don’t mind because I long for the touch. She touches me as much as she can raising the soft knuckle of her finger to caress my cheek, which is still smooth and does not hurt. It is how I imagine kitten fur feels, they way her soft knuckles pet. I had told her this and she pretends to purr as she touches me and I giggle. I know it is the most she can give me. She holds me when she is setting me into the tub and I close my eyes to the pain and imagine I am like a normal child getting a normal hug. I can feel her anguish but I can also feel her love.
I am on permanent fire. I have dreams that my skin slides off my body like strips of bacon frying into a pan till I am nothing but a bloody skeleton. When I awake I feel that my nightmares have come true. I awake a nineteen year old child. My four-year old body cut and bleeding, my fingers fused together with a hot glue gun. I panic, who am I. Then my mother walks into the room and smiles down at me. I remember who I am. I am child in fire with bones of ash. I am loved.