Monday, August 24, 2009

More about the celebration

I've had a few calls and e-mails from people who were worried about me since I hadn't posted anything for several days and they thought maybe the event had really wiped me out. Actually, I've been feeling pretty good until yesterday, when I was exhausted and never made it out of bed, and I've been busy and out of the house quite a bit. Now it's Monday morning and I feel like today will be a good day once again.

I started writing about the event on Friday but left it in draft form, so this morning I reviewed what I had written and posted it. To my surprise, it posted with Friday's date, as when I've posted drafts in the past they appeared with the current date, rather than the date I had written them. So if you've been checking back every day, you didn't miss anything; it's just a little blogspot mystery.

Getting back to the chronology of the celebration (as best I remember--I don't have a program in front of me), after Tina spoke we showed a video from Portugal, from the members of AEIPS, the Association for the Study of Psychosocial Integration. I have been to Portugal a number of times, and it was very moving to hear people talk about how my visits had given them hope and led them to become active in their own recovery. Jose Ornelas, the psychologist who started the organization, had met me many years ago when he was a graduate student at Harvard.

I had asked Tom Behrendt to speak about NARPA (the National Association for Rights Protection and Advocacy) ( but the night before he had e-mailed that he was on his way back from vacation and was stranded in Quebec with a broken-down car. That morning he had e-mailed that he might still make it, but he didn't, so I asked Ron Bassman to speak about NARPA instead. The annual NARPA conference has always been an important event in my life; attending one with me in Baltimore a few years ago was Marty's introduction to the movement. I have always said that NARPA is the place where I recharge my batteries for the year, the place where I no longer feel that I am swimming upstream, but instead am surrounded by people who share my beliefs.

I can't remember the order, but the remaining speakers were David Oaks and Sally Zinman, both on video, and maybe someone else that I'm leaving out. David had everyone laughing with his routine of searching for normality with a rubber chicken, and declaring, to everyone's great relief and much laughter, that there was definitely no normality to be found in the room! And Sally, who is fighting her own battle with cancer, and who just had a hip replaced, spoke movingly about the work we've done over many years.

We had had some discussion about an open mike, and Marty asked people who wanted to speak to come forward. A lot of people lined up and I was getting worried about the time that was left, so although all the comments were moving and heartfelt, and although there were still a lot of people who wanted to speak, I announced that it was my party and I was going to cut off the open mike because we wanted lots of time for people to mingle, and for the wonderful food to be served.

I had tried to imagine what Marty was going to say, and his remarks were beautiful and moving. One thing he said was so bittersweet--about how he had finally found the person he might possibly want to spend the rest of his life with, but he didn't mean it the way it has turned out. He quite publicly declared his love for me, words that we were reluctant to say in private for such a long time, but which we now say freely.

I really don't remember too much of what I said; I'm looking forward to seeing the video that Oryx Cohen made to jog my memory. I talked about all the support I have--from my family (I asked Julie, Jim, the kids, and Florence to wave to identify themselves), from my hospice staff (who called out from the back of the room that they were there), from my PCA's (who similarly waved), and most of all, from Marty.

Once I was finished speaking, the waiters started coming through with a selection of delicious treats. One of the reasons I wanted to hold the event at B.U. is that I know how good the food is from attending many receptions and similar events, and it did not disappoint. Someone brought me some wine, and I nibbled while getting a chance to have a few private moments with nearly everyone there. It was so wonderful that after all the planning and all the discussions and all the crises leading up to this moment, in the end it all came together so beautifully.

It took awhile after things ended to get everything packed up and ready to go, but eventually I got back in the scooter and headed to the lobby. On the way, I passed a table at which some of my friends, including Darby Penney, Laura Prescott, Chris Hansen, and Shery Mead were sitting, and I got a few more moments to meet with them, and to get some pictures taken.

Once we got home I was, of course, tired, and wanted to get into bed, but I wasn't as exhausted as I thought I might be. I had expected to be totally wiped out on Friday, but I felt surprisingly good, and on Friday evening we all went out for dinner, since Florence was leaving early the next morning. We went to a nearby Italian restaurant that's one of my favorites, and I was feeling so good about feeling good.

The good feelings continued through Saturday, when Marty and I went to a showing of a very interesting movie, "The Station Agent," being shown by the Cambridge Commission on Disabilities, where I had a chance to speak with several old friends who hadn't made it to the celebration, as well as watch the movie and participate in an interesting discussion of the disability issues it raised.

On the way home, we passed a restaurant that Marty had heard about on "The Phantom Gourmet," and he told me they were supposed to have the best hamburgers in Boston, so even though it was a little on the early side we decided to have dinner. The burgers were yummy, and we each had a beer. I was so surprised to be up and around when I was expecting to be exhausted.

But on Sunday morning, when I woke up, I really did feel exhausted. It was one of those morning when I just kept going back to sleep, and I slept on and off most of the day, and just felt lousy and weak. Happily, I woke up this morning feeling like it's going to be a good day, which is just about to get started.

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