Yesterday morning, Lynette was able to get me into the bathroom, but when I had a problem making the turn into the shower, I suggested she wash me down while I sat on the toilet. But she was insistent that I should get into the shower. She helped me, and I got in, but I could tell that I was weak. So, when it came time to get out, my ankle twisted and my feet gave way. Somehow, I lost me balance and my handhold on the sink let loose, and I fell into the shower so fast that Lynette couldn’t catch me. At that point, Ellita had walked in, so they both got me up and on the toilet. I was totally exhausted, but eventually we got me out of the bathroom. It’s clear now – no more bathroom. If I am strong enough to get in, there’s no guarantee that I will get out. This morning, Lynette gave me a bed bath, but I couldn’t breathe while I was lying down. And it was so difficult to turn me over, and harder still for me to hold on to stay turned over. Then, I had trouble loosening up to bend my knees to get up off the bed. We are going to have to bring the Hoyer lift up from the basement.
It is so difficult to tend to me now. I feel the aides are really beginning to feel the strain, and one of them seems angry and moody. I have stopped asking her if she is okay, because she just nods her head. I never know if she is unhappy with the work, or me, or something that has nothing to do with me—something from her personal life that she has carried to work with her. All I know is that I don’t like to ask for anything when she is like that. I have expressed to a few people that I feel “shut in” and they tell me to go out to the store with my aide. But when we are out, she walks behind me talking on her cell phone. So I stay inside, because there isn’t even a place to sit outside near my building.
The new realtor brought a woman over yesterday who had seen the apartment during the open house on Sunday. She came with a tape measure. So she is very interested. But then there are those six board members. As if I needed another reminder that my life is not my own, I have to hope that those six board members don’t reject her too, forcing me to stay in a world of bed baths and asking for snacks from the kitchen like a three-year-old. And maybe I had better lay off the snacks anyway and lose some weight so I can be moved.
I joined a group online yesterday to support Barack Obama for president. But then Carol Creamer reminded me that he is not a great friend of the middle class. I don’t feel that I belong to the middle-class anymore. I am definitely a member of a disenfranchised underclass right now, but it was the disregard for the middle class that put me there. So, yes, I still see the need to advocate for the middle class. This leads me back to Hillary, although I don’t think she would give a hoot about my situation. On the surface, I am well cared-for, and my basic needs are taken care of, even though my spirit is destroyed.
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.
Friday, September 14, 2007
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