Got back a little while ago from my visit into the Land of the Living. I love just sitting and people-watching, not always from the window of an Access-a-Ride bus. And to talk about something other than ALS. But I accept that my apartment is not conducive to entertaining. It's embarrassing to have a commode and certain equipment in full view. Two of my former students came to visit me and cook me dinner, and I didn't think about how inapproriate this place is for visitors.
And leaving the apartment seems to make others feel, well, a little uncomfortable. I thought my mission was to be out there and show that one can live with ALS, but I guess it didn't work out that way. This disease makes other people very nervous and confused. I am getting tired of hearing how people don't know how to act around an ALS patient, and what a frightening disease it is for people to look at. And most of all, I am sick of hearing "well, what is he/she supposed to say/do?" when I relate to other people that someone else was disrespectful or rude to me. All I can say is "learn, people!". And it would be nice if "friends" could help set people straight, and it can be done nicely. Yes, it's not easy to be around me;it's even harder to BE me. If someone asks you questions about me, or refers to me in the third person, with me sitting right there, would it kill to say "you can talk to her; she hears and understands". Recently, when an ignoramus at my hair salon screamed in my ear "CAN YOU PLEASE COME TO THE BACK", my aide politely said "Please don't yell; she isn't deaf".
Which brings me to my polling place. I elevated my wheelchair and STILL couldn't reach the top row to vote for president! Judy had to come in and pull the lever for Obama. AND NO -- don't even go there! don't tell me I should have gotten an absentee ballot! I am not in a nursing home, housebound, or out of town. We [disabled people] are supposed to be able to vote in one of the hundreds of accessible voting booths throughout the city, that obviously didn't make it to Rego Park. Even Judy was outraged because where she voted in Roslyn, they had an accessible booth.
Right now I am praying that tomorrow we will have President-Elect Barack Obama!
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.
Tuesday, November 4, 2008
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Great blog entry! I like how you speak your mind. You really get to the heart of the matter. Never give up the fight...Clarissa (a reader from California)
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