I am healthy and capable of living on about 75% support for another decade or so. At the point where I require 100% support to live, at the point when nurses must physically remove crap from my bowels, at the point when I would require a communicator to talk if I could type or sign, I wish to die peacefully, with what I have left of my dignity. Who the hell am I?
I have Friedreich's Ataxia that assigns a date for my death about 66% sooner than is normal. Before that point, I will be reduced to a vegetative state similar to that of Mrs. Schiavo. I do not wish to be publicized, do not wish to be put on display for thousands of mocking eyes, do not want the pity of every wannabe who want to be somebody by protesting to have my misery, my torture, my life, prolonged.
Nor do I wish to be starved to death, as evangelicals lobbying for the law which gives more time for a "miracle" to happen requires. What I desire is for my existence to end, when I am thirty, there will likely be no hope for me. I do not want a court battle, I do not want the federal government to infringe on states' rights (as happened when, last week, the feds ruled that the Schiavos be able to appeal to the federal courts) on my behalf. What I want is a quite shot - painless, tearless, and forceless - to end my suffering and save my dignity.
Then do it yourself, don't drag anyone else into it.
My heart goes out to you. Yours is not an easy path - in which you were given no choice.
And as your illness progresses, your mind will remain fully active.
I don't believe anyone else - other than someone with Friedreich's ataxia - has a right to judge what you will or wont, eventually do.
Myself, included in my Living Will will be the instructions :"Do not kill by starvation>"
May blessings unexpected come your way...and peace