Saturday, I did half of the last day of the Ride For Life. It was so nice to be out and around the city. Lately, I have only seen the city from the inside of an Access-a-Ride bus. We met the group at Columbia University and rode to Columbia Presbyterian Hospital. At the University, there was a moving ecumenical service. Then we walked or rolled to Columbia Presbyterian, where there were sandwiches and salads for dinner. It was so nice!
My UTI still won't go away. I am on my third round of drugs. I feel wiped out, and very depressed, like a black cloud following me. I just wish I could hire a companion to go to a museum, a park, or a neighborhood to explore. I am grateful for Judy who comes to take me to Starbucks once a week. I wish there were field trips for ALS patients. Anyway, I am grateful to be able to stay in my own apartment, and not have to go to a nursing home.be But I wish I could make it nicer. Little things like hanging pictures would make it more attractive.
Monday my aide Cheryl [Ellita's mom] called Verizon for me to take features off my landline telephone, and put me on a per-call basis, because I hardly use it and I don't use long-distance except to fax my bills to the NYSARC Trust. I am trying to get some of my other bills trimmed, so that the $725.00 I am allowed to keep can go a little further.
Saturday May 17 is the NYC Walk to D'Feet ALS. This is the first one in the city so, even though I always do the Long Island Walk in September, I am going to this one it's a good excuse to spend part of a day along the Manhattan waterfront. I wish I didn't have to depend on events and friends to get out. I have always been able to make things happen on my own. The worst thing about ALS is loss of independence, and having to wait to be invited somewhere.
I am disgusted by the way I look. Because I can't get in front of the bathroom mirror anymore, I don't often get to see myself. I caught a glimpse of my reflection in a store window yesterday and I can't believe what I have turned into. Suddenly I understood why relatives and friends are staying away. I have lowered my food intake so much, but the pounds are just not coming off. There are exercise classes for disabled women, but they are pricey. I just can't figure out how to burn off the calories. Of course it's hard for me to apply eye makeup, and my skin color looks unhealthy from too much time inside. And I didn't think that hugely obese blob in the store window was really me, but it was! I am just ashamed I let it get this far, and lost such pride in myself. And I can't figure out how it can ever change.
My kitchen is not my own. I got to take my first shower on Tuesday in several months. It took two aides, but we did it. I can make the situation better by replacing my sink and vanity with a wall hung sink, and by removing the wall hamper, but the cost would be prohibitive. The aides don't want to get me in the shower again. The "no rinse" solution is drying out my skin, and I am reading that showers are essential to slough away dead skin, and prevent pressure sores. We took the bathroom door off, so I can get the wheelchair right up to the doorway, but once inside, it's a cooperative effort of two aides working together, and they are afraid of dropping me. I'm sure my new elephant-sized body is doing nothing to ease that fear!
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.
Thursday, May 15, 2008
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