Well summer is at an end. I am grateful for the three outings I had this summer, which was really a hot one. At the beginning of the summer, Louise invited me to the annual barbecue at her church, St. Luke's, in Forest Hills, on a beautiful summer evening. In July, Judy came out and we took Access-a-Ride to the Rockaway boardwalk. It was pretty empty on a Tuesday, and Rockaway is still very depressed, with a lot of boarded-up businesses right next to the beach on Beach 116th Street. It reminded me of my home town -- Long Beach -- before it got the HUD grant which facilitated its revival. There was an SRO right off the beach and therefore some shady characters on the boardwalk. Originally, we were going to go to Brighton and have lunch in one of the Russian restaurants on that boardwalk, but I thought it would be too far, and there is a city bus from Rockaway to my neighborhood in case we had any trouble with Access-a-Ride. But Access-a-Ride was impeccably on time, and I'd forgotten what a long ride it was from my house to Rockaway, along Cross Bay Blvd and through a long stretch of nature preserve. I wish I had gone with Judy's original suggestion of Brighton, which would have taken the same amount of time over parkway. Oh well. But it was hot and the sun was out, and I knew it would be my only opportunity to see the ocean this year, so I was grateful to be there. And Judy is great for having gone with me.
My third and last outing this summer was in mid-August. Jenny Vidoni, who works at MDA in Manhattan and coordinates the MDA/ALS efforts in NYC, came out to visit. I know Jenny from our support group at All Souls Church, which she co-facilitates. I was just so grateful that she came out because Manhattanites hate to come to the outer boroughs. We walked to Flushing Meadows Park, and visited the Zoo. We had a great day. Jenny is used to dealing with all kinds of disabilities, so it was fun, and extremely comfortable.
I was invited to be part of the Consumer Board of Concepts of Independence, Inc. Concepts is the company that runs my Consumer Directed Personal Assistant Program [CD-PAP] This is something that disabilities advocates fought for, along with the Americans with Disabilities Act. The CD-PAP allows me to remain in my home and select my own aides [personal assistants], rather than depend on an agency. Those of you readers who have been following me since the Caring Bridge page I had, know what a triumph it was when I got onto the Concepts program. The agency I worked with before, through which I met 3 of the aides I have now, was less than accommodating, sending all kinds of aides to me who were less than satisfactory. I was robbed of a brand-new digital camera, and plenty of cash. Some of them were so scary, I was afraid to go to sleep at night. Eventually, I got a team of aides whom I could trust. But when any of them called sick, the agency sent strange aides instead of ones I already knew. It's very difficult to keep training strangers about what to do, especially since I can't speak. And some of them were intimidated, frightened, or just plain lazy. I had an assortment of ladies who I am sure were nice people, but they resented being sent to such a "difficult case" and took their perceived misfortune out on me, or just fell asleep, snoring, in my big comfortable chair. My complaints fell on deaf ears, with the agency supervisor often telling me "I have a hard time finding aides who will go to you at all". That didn't make me feel very good, and to top it off, I had a nurse who would come once a week and tell me "I have a hard time finding an agency who will take your case on a long-term basis, because your case is so difficult", which made me feel even worse. The day I switched to Concepts was a happy day.
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.
Tuesday, August 31, 2010
Update August 30, 2010-- Bye-Bye Summer
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Great news about the Consumer Board of Concepts. I spent a few evenings a while back reading through your experiences with aides and your apartment -- egads. I don't think most folks appreciate the exponential challenge for a single person completely reliant on aides. I'm glad you'll be able to provide input.
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