It's important to record the events that we, particularly mom, are participating in. In a previous post, I talked about the "rough" ride to DC, roughened by the read of the Maria Schriver study on Alzheimer's and women, which was released and discussed at the conference. One part of the conference tied the whole thing together, Mom's remarks. Ms. Schriver was supposed to initiate the conference with remarks, made over Skype. She was in NYC doing the rounds of early morning news and public interest shows to push the envelope on the nation's understanding of the disease and the coming tidal wave. However, the sound system didn't work and she could not tell her story. So, in Wash. DC, the location of the panel discussions of the book, they turned immediately to Mom, Kathryn and Oma. Her remarks, as many know, were short, direct, open and positive. More than that, they were unusual, the tack she and we have taken from the outset. Her words were so open and direct that every panelist referred to them in a meaningful way. So, as she often does, she provided the glue in one sense that held the discussions together. Sure, their comments and observations were more studied, insightful and informational. However, they used Kathryn's sentiments to underscore the nature of the disease, the need to get on with the research, and the need to make a national stand. It was wonderful. Many hugged her after the meetings concluded.
In contrast to Washington DC was our experience in Davis County this last week. Thursday night was the annual Davis County Gala. Each year, they focus on a different social issue. This year, they wanted to do Alzheimer's. The Gala was held in the very nice, very large convention center in Layton. It was decorated beyond sanity, walls all draped in black plastic, white ghost images floating up the walls (camera projections), chandeliers draped in cobwebs and swaying back and forth, nice dinner, dessert of white chocolate skulls filled with something red and oozy and dark chocolate coffins filled with a white chocolate skeleton, zombie babes wandering around the 70 or so 10-person tables, staring blankly at everyone. There was a silent auction and a later bidding. Everyone was dressed formally or in costume. We went as Leonard in a dark suit and Kathryn dressed in a dark full length dress. All the politicos and richest of the rich were there. Bottom line, fun, but Alzheimer's was an afterthought. Mom was asked to speak for no more than 3 minutes. She spoke for 4.5 and good for her. There was polite, unemotional applause. They got really excited when the winners of the silent auctions were announced and the big ticket items started going. That's when we exited stage left - we rarely go to the right anymore. No one said thank you or good luck or have a nice life. Our response. Thanks for the monetary support. We'll find comfort and understanding elsewhere, like with beloved family and dear friends.
Then there was the Halloween party at the Murray Arts Center. We went as "Sick and Tired." Few got the joke, but who cares. The impact on us was interesting. We did a really good job on each other's makeup. Mom looked horribly sick, water bottle tied to the top of her head, thermometer stuck in her mouth, a comfort doll, wearing PJ's and slippers, reddened (deeply) eyes, and dour affect. I had darkened eyes, PJ's, a pillow and a comfort doll, a cloth skeleton the California Romney's had sent us. Mom actually got to feeling poorly and I was quite worried that she really was sick. We couldn't get home soon enough to get the make-up off and get normal again. It was a perfect example of psychosomatic, suggestive illness. Don't go as Sick and Tired. Pictures of the seven dwarfs and our friends, the Farnsworth's and her mother are above.
0 comments:
Post a Comment