Hi Billy. Bill of Il.here. I share your sentiments and emotions. I too, lived my life as you do, dead from the neck on down, but my brain never quit working. Unfortunately, as you say, some insinuate that we must be as equality retarded as we are handicapped.
I understand that blind people often experience something similar to this same event. Seems that when individuals learned the person was blind, they immediately began talking much louder and had to be told, "Hey, this person is blind, not deaf." Example. At one point, when I was 60 years old, I was told that I had only 24 hours to live, and that there was no hope for me because the tumor had crushed my spinal cord to the thickness of a ribbon. Those were the words of my neurosurgeon, a great and wonderful doctor. After surviving the removal of the tumor, I was told that I was lucky to be alive, but that I would live as a vegetable for the remaining time that I remained alive. I spent months lying in bed, not being able to turn over or to even feed myself. I remember lying in bed, doing the only thing I could do on my own, and that was to watch life go by. When I tired of that, I would yell and someone would turn me away from the window. The longer I lay there, the more determined I became to make an effort to change my situation, if only in the slightest way. So slowly I began to fight back against this thing that tries to destroy us. I remember the first time I tried to sit up. Someone had to hold me in a sitting position or else I would fall off the bed. It took several months, but I finally reached the point where I was able to sit up unaided. What a great feeling it was to experience that feeling of freedom. We have all been robbed of our lives and dreams and aspirations by an enemy we never knew. We didn't ask for this life, so why should I give this enemy every last once of victory. Every time I learn to do something that was taken from me, I win back an once of freedom. I take back what has been taken from me. Like Billy stated, I am not brain dead, and I have an awful lot of time to think as long as I am sitting there, so I began to outsmart the enemy and figure out ways to succeed in the simple tasks. One day after a lot of work I actually buttoned one button on my shirt. Yes, in a matter of seconds my PC person could have done it, but that person (as wonderful as they are) will never experience the sweet feeling of that success. I never, never belittled anyone for trying to help us. These were embellishment written by someone else writing on the list. The analogy was given about an elderly lady crossing a street. Should we sit idly by and watch her struggle, or should we run up to her and announce that we are going to help her cross the street. We do neither. We first approach and ask her or him if they would like any help. This satisfy's the human urge to help those in need, but remember, we can only respond to the elderly lady's response. If she says why yes, thank you, we then her. but if she says, no thank you, I want to attempt this crossing on my own, we can only capitulate and watch her cross the street. No one is demeaning those who are care givers, but if any of you were to come up to me and ask me if you could do assist me with somethingBill o I was trying to do, I would simply tell you not at the moment, thank you, I want to fail first. Today, as I write, after 6 years of trying, I can walk a little bit on my own, even though I was told that I would never be able to walk unassisted. I am not through declaring war on the enemy, and will continue to do so until the last hour before I die, which time is always near. When I do check out, I plan to do so with a smile on my face, because I gave that enemy(whoever that might be) the best fight I was able to bring to the battlefield, given the condition I am in. Bill of Il.
