Saturday, January 5, 2008

A New Year

A New Year. The only resolution I am making is to make no resolutions. I will try to live one day at a time, and have no more hopes of anything getting any better or any easier. It’s freezing in my apartment. There is a huge draft coming through my air-conditioner. The building management says the staff isn’t allowed to do any private work for any of the residents. I never heard such a thing! I can’t hire them to cover the damned AC!!!! And Chelsea’s corner is really cold, so I have to move her whole housing setup/ And I can’t hire them to do that either.

I had to go to Manhattan Thursday for an appointment and stood in front of the building in the bitter cold waiting for the Access-a-Ride van. Once again, I looked at the lobby that I couldn’t enter without a ramp; it’s times like these that really remind me of inaccessibility and barriers. A simple thing like shelter from the cold is so out-of-reach because of two little steps, and a co-op board that refused to put in a small ramp. I can’t help thinking that, if one of the board members or a member of one of their families, was suddenly wheelchair-bound, that ramp would be there in no time flat.

Nancy’s house for New Year’s Eve was great. Nancy, MaryAnn, and the other guests did everything they could to include me in their conversations and other doings. Even though I had Gulshan with me, These are not people familiar with ALS; I am the only person they have ever known with ALS. And they are not a community of social workers, just a group of people of different ages, occupations, and backgrounds. A few of the people have known me a few years, and some had just met me. I wonder why it’s so easy and natural for some people, to deal with a disabled person in their company, while for others, it is so difficult and stressful.

Another patient, Stan Silver, is in Calvary Hospice in the Bronx. A couple of weeks ago I went to visit him. He had a urinary tract infection and recovered, but he is too weak to go home. His wife Phyllis was his primary caregiver. She is at Calvary all the time, and other family members come in from other states to see him. I am praying that he will regain enough strength to go home and sit at his computer again.

Ethel Crowley, a fellow rider on the Ride for Life, passed away last week. She had children [who were also caregivers] and grandchildren. Some other people I know online have passed away too. We are not any closer to a cure, or even a more effective treatment. Every morning I wake up and know that I have another day to try to get through with a positive attitude. But it’s so hard when I have lost so much hope.

There are still little triumphs. Last week I was actually able to wheel myself close enough to the kitchen sink for my new aide Keter, to manage to wash my hair with real shampoo. We did have to use a pitcher, and we got a towel really wet, and water on the floor too. But it felt good not to have to spend a fortune at the salon.

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