Well I got through a Passover and Easter with some psychic pain as I do most holidays, but it’s over and I am okay. My aides are on Concepts, and no longer afraid that the “agency” will find out if they go out shopping or out of the immediate area with me.
I am hoping that next Sunday’s open house will be the last one I will have to have. I dropped the price a little to get the apartment sold and get out of this building. Twenty-two years here, loots of neighbors, but ALS turned me into a non-person. I don’t know anything about anyone anymore, because no one shares anything about their lives anymore.
Sure, I have people who fly in and out of here, to do this or that for me, and then to go back to their lives. I am this “obligation”, another chore they need to fit in, between the grocery and the laundry. But at least I have people who help with these things. So I am adjusting to my life as a “chore”. I sat in today with my aide watching television movies. My aides are my new social circle. I am more involved with the teams on the “Amazing Race” or the contestants of “American Idol”. I know more about their lives than the people I was once close to. The people on TV have become my new friends. And writing for Metblog NYC and various sites online have become my new occupations. I know people are reading my journals; they know all about what is happening with me. I just have no idea what is happening with them.
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
IZEA
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Sunday, April 8, 2007
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