Monday, October 5, 2009

A busy weekend

As scheduled, the guy (Eric) showed up promptly at one on Saturday to do the filming, and this time there was no construction noise. It took him about half an hour to get all his equipment set up, and then he filmed for about two hours (although I know only a few minutes will make it into the final documentary). He is preparing this for PBS, on the disability rights' movement generally, but he's very aware that psychiatric disabilities need to be included. It hasn't yet been determined which PBS program it will be shown on, but at this point he thinks they are leaning toward "American Experience"'; unfortunately for me, not till some time in 2010. Ann was sitting here watching, and occasionally passed him a note with a good question to ask. Eric found out about me (and Dan) through Fred Fay (, an amazing disability activist who lives nearby (Concord, Massachusetts) and who does an incredible amount of work from his bed despite being almost totally paralyzed.

On Sunday, I watched the Patriots' game on TV (the Giant game was not shown)--it was a good day for football, as both the Patriots and the Giants won. The Giants have now started their season with four straight wins and no losses. I hope they will be on TV next Sunday, as they will not be playing opposite the Patriots.

Later in the evening David Oaks called--he was staying in a motel very near here, but he managed to get quite lost trying to follow Googlemaps directions (which I find vastly inferior to Mapquest--when we went to Hopkinton last week Googlemaps had us turn onto a certain route number but didn't specify north or south!). However, he called several times and I was able to guide him here. We had a nice talk--it's always good to get away from focusing on my illness and talk about the state of the movement and what we need to do to get our issues out there in the public. David is still (quite justifiably) furious about how NBC misled him with the program they did which (despite their promises) "balanced" the story with one about a "psychotic killer" who murdered his mother after going off his medication.

On Sunday evening we went to Dan's for a small dinner party with Dan and Tish (his wife), David, Cathy Levin, Deborah Delman, and a few other people. I got very tired climbing the front stairs to Dan's house, and had to sit and rest for awhile before going into the dining room. In the middle of dinner I got too tired to sit and had to go lie down on the couch, and fell asleep for awhile. But I got up for dessert--three different desserts. One of the women had brought an Iranian pudding flavored with rosewater. Marty and I had brought half of the Junior's cheesecake he surprised me with the other day. And Cathy, who had ascertained from me that my favorite result was "anything chocolate" had brought a fabulous chocolate mousse cake. Of course, I had to have some of all three!

One thing I find very frustrating is that even though people can see how frail I am they insist on talking about how I am going to get better and live for a long time. I'm the only one, it sometimes seems, who is frankly facing the fact that I am dying. Marty says that it's an indication of how much people love me--that they want me to be around for a while and can't imagine me not being here.

Donna was here for the weekend and she and Marty and Judy worked on setting up a scheduling system so there will be people here only when we need them. I'm beginning to have to keep a close eye on my money and my biggest expense right now is PCAs. When we got back from Dan's Marty took Donna home and Julie came downstairs to sit with me. We talked some more about the money situation and she made very clear that her main concern is for me and that I not spend any money I don't need to. This feels really good as I don't feel as able to protect my own interests as I should, so I really do need her to be doing this for me. After she had been here for awhile I fell asleep and she went upstairs; I slept for awhile and came awake just as Marty arrived home, so I had a mango bar and we talked for awhile and then I fell asleep again and slept all night. The increase in amitriptyline really seems to be doing the job!

One thing I forgot to write about last week is the beautiful silver flower pin Laura gave me when she visited. After September 11, 2001, when she and I were stranded in Budapest, one thing we did to try to keep our heads on straight was a lot of shopping, and we discovered a shared love of jewelry. One of the things I bought was a silver pin shaped like a daffodil, which, unfortunately, I lost when I went to Australia a few years ago. I've done some Web searching trying to find something similar, but have never been able to, but Laura found a pin in a very similar style shaped like a dogwood, which is not only beautiful, but has such great symbolic value.

Nancy is here now, and I'm trying to get up the energy to take a shower.


  1. Hi Judi,
    That sounds like a very busy weekend indeed, like the sound of desert especially a chocolate desert.
    I think I know what you mean about people that talk about you getting better, they do that alot with me when it is quite obvious that is not going to happen.
    It is clear to see that I can only move my head and my arms and hands.
    My ms has progressed scarily fast which has made coming to terms with it difficult.
    Despite all that I am going to try my best to enjoy today, hope you have a good day too.
    Thinking of you.

  2. I think, to a certain extent the same applies to death as to madness: people are scared of it, so they deny it. (The true nature of madness, I mean. As it is a lot less frightening to talk about genes and neurotransmitters than about emotions and the life events that have caused them.)