It came to my attention yesterday by a friend that maybe my thoughts and feelings might be causing people to “censor” what they tell me. And it was further suggested that may be why people are not visiting, having me to visit them, or even to email me. So I would say this -- common sense prevails. Yes, if I am sitting in all summer and friend emails me and says “I had everyone (people who know me) over for a barbecue and they all send their regards”. Yes, that could be painful, because I would have gone in earlier days. And if I am sitting in with an aide on New Years Eve and you tell me the details of the wonderful New Year’s Eve party you attended, that could be a little insensitive. But there are so many other things to talk about. All I can say is, let common sense prevail. Imus said something hurtful, and he is off the air. If the comment he made were degrading to disabled people, I don’t think there would have been such an uproar. It’s easier to just avoid us and make believe we’re not there.
You can find out what is going on with me without ever having to deal with me directly. That way you don’t have to worry about saying or doing the wrong thing. I am amazed at how many read this -- they obviously care about what I’m up to. I am not going to censor MY words. Just think -- if you don’t like reading it, you don’t have to. It’s like pushing the “easy button” on the Staples® commercial. Of course many of you figured that out and I don’t hear from you anymore. So be it. I hope by the time my nieces and nephew reach adulthood, people will know what to do and what to say to disabled friends.
On that note, let me say that Haley and Claude picked me up on Saturday for dinner in Little Italy. It was nice to get out into the city, and to have a nice dinner. I hadn’t seen the family since Christmas Day, so it was nice to get together with them. I go once a week to see my therapist, Dr. L, and to clinic appointments four times a year and support groups twice a month. But I never get to stay and enjoy the city, and I do love Manhattan so much. The forces seem to be against me -- there is a storm brewing on Sunday for my next “open house” this Sunday. But we dropped the price by $15,000 and the realtor says he has been getting a lot of calls. I have been continuing to throw out “stuff” so that I will have less to move. I will have to pay the moving company to pack and unpack me, since I can’t do it and I don’t have anybody to help me.
Now, on to the update -- never a dull moment. My phone stopped working on Saturday and I checked to see if Ms. Chelsea got to it as she did once before. But, no -she didn’t. Nancy and MaryAnn did an excellent job of hiding the wires from her. So we could not figure it out and Monday I sent an email to Verizon and arranged an appointment online for Tuesday. When I came back from my therapy appointment Monday afternoon, there was a message from Verizon that a tech had been to the building but couldn’t get in the apartment or the garage where the phone cables are located, because I was gone and the doorman is off Monday. So the tech came and found a spot by my bathroom where the phone cord broke. He assumed it was rabbit-chewing, but Chelsea never goes there, so we figured out that spot is where the wheelchair hits, where it has to park, and where I have to disembark and hang on to a grab bar in the narrow corridor to get my feet going three or four sidesteps into the bathroom. These three or four steps are so exhausting that sometimes I barely make it in there, and land on the toilet catching my breath. I have to go through this All this because the wheelchair won’t fit in the hallway and in the bathroom.
The loss of phone service for three days was not a serious issue because I have the cell phone, and the computer is connected to Time Warner. But I was concerned because my emergency alert system is dependent on the phone, and my aides go out shopping and to do laundry. Yesterday, Ellita went to the laundromat and had to wait for a dryer, so she was gone a while. I had forgotten to tell her to leave something to drink and something to snack on. Well, I can’t get in the kitchen. And even if I could get in there, I can’t reach the cups and straws anyway. So, I waited. So much for independence. I was also concerned about the fax machine when the phone was out. I use the fax to send the aides’ time sheets to Concepts, and my bills to NYSARC.
My wheelchair was picked up for new batteries and repair to the joystick box. I will have to pay for the batteries out-of-pocket -- $385.00 because a year has not passed yet, so Medicare won’t pay. I am also trying to get funds for a laptop, and a digital camera to replace the one that was stolen. I hope to be doing Ride For Life from Nassau County to Manhattan, May 4-7.
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, April 12, 2007
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