I am looking at the possibility of reconstructing my apartment for better accessibility, since I am so totally disgusted with this sales process, and I don’t know if this board will ever approve a buyer, when I do find another one. A woman from the open house a couple of weeks ago, made a lowball offer. I asked the realtor to negotiate her up in price, but I haven’t heard from him.
I am so totally exhausted, and my breathing is getting worse, and I don’t feel as if I will survive the turmoil of a move at this point. I have loads of people who have offered to help, but I have no reason to believe anyone will be able to come through. Lives all seem so crazy these days.
So I am thinking of renovating, which would also have to be approved by my board. But I feel I will be more capable of a legal fight if they try to stop me, because I think if I were trying to do construction to make the apartment accessible, I would have the right to fight them.
Of course, there is the issue of where I am going to find the money for such a job. I seem to remember that there are organizations that have grants for this kind of thing. The work has to be done by a licensed contractor, and all licenses and plans have to be approved by the board. When I had my tub removed and the stall shower installed, it was a long process – a few months, in fact.
In the meantime, since my fall a week ago Thursday, I have not been in my bathroom. This means sponge-baths for 9 days now. My hair was washed at the salon last Saturday, when I had it cut and colored. But tomorrow will be a week of no hair-washing. This is the longest I have ever gone without washing my hair in my entire life. I feel terrible, and the hair is starting to smell. I can’t get close enough to a sink to wash it. So tomorrow, I have to get to a salon. It’s Yom Kippur, but I have lost all Jewish identity with this disease. Even if I wanted to go to a local temple, I don’t see an accessible entrance on any of them.
All I keep thinking of at this moment is my filthy hair, and a body that hasn’t been properly showered in 9 days, and may never again see a shower if I don’t move, or get my apartment fixed up, both of which would take months anyway. I never dreamed that my needs could ever be so basic and primitive.
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 21, 2007
Posted by Fern Ellen Cohen at 6:21 PM
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