Does what it says on the tin! Notes to self. A diary, if you will, recounting and recalling my life thus far, with and without MND.
Friday, 24 December 2010
Love Note to Mytobii
Dear eye gaze system, thank you from the bottom of my heart, thank you for changing my life.
Before you came along, I felt empty inside. You filled a cavernous and lonely void in my life and I can never thank you enough for being my voice and my contact with the world, unconditionally there for me. (Apart from the broadband contract condition and conditions of internet use... actually there are quite a few!)
In his essay, 'Night' Tony Judt writes of how MND affected him. I am at the same stage. By my present stage of decline, I am thus effectively quadriplegic. With extraordinary effort I can move my right hand a little and can adduct my left arm some six inches across my chest. My legs, although they will lock when upright long enough to allow a nurse to transfer me from one chair to another, cannot bear my weight and only one of them has any autonomous movement left in it. Thus when legs or arms are set in a given position, there they remain until someone moves them for me. The same is true of my torso, with the result that backache from inertia and pressure is a chronic irritation. Having no use of my arms, I cannot scratch an itch, adjust my spectacles, remove food particles from my teeth, or anything else that—as a moment’s reflection will confirm—we all do dozens of times a day. To say the least, I am utterly and completely dependent upon the kindness of strangers (and anyone else).
He goes on to say that in this 'cockroach-like existence,' night ' is, like the disease itself, incommunicable.'
My Mytobii, you make everything communicable.
C10, I want to spend the rest of my life with you. I want to wake up to you every morning. I want to hear you whirring while you're downloading films. You are my comfort during those interminable nights. When I am trapped inside my own head, you are my outlet. The type of 'locked-in syndrome' associated with quadriplegia is truly horrific to imagine. Julia Tavalaro writes of her experience of 'locked-in syndrome' in the book, 'Look Up For Yes'
Here I lie in my bed
Just as if I were dead
Hoping wishing Hallelujah praying
That my last breath will be my next
You offer me a pass-key to escape and allow me to dream of many breaths to come, assisted or not.
You make my life complete . You make me feel like a valid human being with much to offer and a means of expression. I went shopping with you and picked out a beautiful gift for my daughter, I can't wait to see her face on Christmas morning. With your help, I thanked the postwoman who brought it.
It is said that the way we communicate with others and with ourselves ultimately determines the quality of our lives. Thank you for enhancing the quality of my life.
SometimesI can laugh so hard I cry; you let me share the joke with friends.