Thursday, December 6, 2007

Dusting Off My Boots

I am going to try to get through the day from now on, and count my blessings. I am not going to expect anyone to bring me along with them anywhere. Most people feel uncomfortable with disability and it isn’t their fault. Our society values beauty, athleticism, and strength. We do nothing to teach our children to deal with differences, especially in appearance.

My life can’t get better, so I have to deal with what is now. If there were a grant to modify my apartment, someone would have found it by now. As usual, I am chasing something that doesn’t exist. My goals have to be simple – clean out the apartment from all the stuff I have been “meaning” to sell on eBay. I will read books I have been “meaning” to read. I will stay where I am; I have no strength to move. And when it gets impossible to be cared for at home, I will go to a facility.

I will continue to write, but I don’t think I will publish a book. I don’t know what I was thinking when I thought I could actually sell a book! I don’t know what I was thinking when I thought I would move to Manhattan; I don’t know how I thought I could ever do something like that..

There is a part of me that imagines people laughing at me, thinking “well, yeah…….helloooooo”. Well, go ahead and laugh. I had dreams. They gave me something to obsess about and, okay, waste time and energy. So now I am getting up and dusting myself off. I read about people who raise money with the help of friends and associates. Okay, so that won’t happen here. I hear of people who have formed “Share the Care” groups, and think “hey, I can do that!. Well, I guess I can’t.

My aides are employees; they are not friends, and probably shouldn’t be. They come in, do their hobs, and go back to their lives. They don’t want to go out with me; they don’t want to go out to eat with me; they have their own people to hang out with. They sit near me and talk on cell-phones and text message people in their own lives.

I do have things to look forward to. I can’t wait for Sunday at 8 [The Amazing Race] or the third Tuesday of the month [Beth Israel ALS support group] or the first Monday [MDA/ALS support group. I look for an email from a frien when I open my computer each day, but don’t expect a visit or an invitation to anyone’s house. People promised to take me here, there, and everywhere. They didn’t realize how hard it would be, and neither did I. And yet, it’s actually easier than people think, for me to get around, and it doesn’t take much to entertain me. But they don’t know to find out if a venue is handicap-accessible. Or maybe they are afraid that, if they give a little, I would be thirsty for more. Or maybe they just don’t have the patience or time, like my friend at Dunkin Donuts, for someone who takes twice as long to do anything.

It’s not my fault that I got this, but it’s not their faults either. They have enough stress to deal with, and want a relaxing afternoon or evening. They don’t need someone around that they have to worry about.

All this does not mean that I love the situation. My apartment still stinks. It’s small and it’s dark. My mini-blinds are filthy, and the blind in the kitchen is broken. I haven’t had the urge to change them. My neighborhood still makes me feel as if I am in some foreign country. I am still isolated. I still can’t get into the kitchen or the bathroom. But that’s the way it will be for a long, time, and maybe for the rest of my life.


Anonymous said...


I found your blog through the LIving With ALS Yahoo group. My Father-in-law was diagnosed this past January. Your writing is beautiful, brave and honest.......hold on to your dreams. You deserve them.

I wish I lived closer to help! Please know people are thinking about you and caring about you, even if it is long-distance.

DAR said...

This comment is arriving 4 years late. I love the rawness in your writing. It's from the heart. I wonder how you are doing. If I were close, it would mean everything to me to come help you out. I know this disease. I know it well. That's why I would come. And I wouldn't charge a penny, because you are priceless. Bless you dear.