Yesterday I spent half the night trying to relax to sleep after spending a few hours with a friend who acknowledged last night that she is having what may be visible signs of Huntington's Disease. Then I told her it may also be 300 other visible things. Like Essential Tremor which is basically benign.
It just wasn't obvious to others until last night. Two nights ago her arm got fine tremors during a meeting of over fifteen people. She was able to use her other hand to nail the offending wrist into the arm of the chair where no one would notice. However, the next night people did notice and stopped her to ask if she was alright. She is now discussing going to UCLA's Center of Excellence (title bestowed upon them by the HDSA)
She is scared to go because her mother did not emotionally get over her genetic test for HD. I told her she has a strong support network, unlike her mother did at the time of her testing.
We talked and talked until wee hours of the morning. Finally I had to explain that "I'm not her doctor and I don't play one on television. In fact, technically I'm not a librarian but that one I got to play on the CCTV at work."
Then she laughed,. and I laughed and we cried over her mum and we laughed some more and then talked until our throats were sore.
We made plans on what we will do to support the Occupy Santa Barbara group. On the way out she asked if I was going to blog about it. I told her that like last time, it depended on how she felt about it. She asked me to so other people would see how hard HD is on kids who come out of the starting gates with no prior knowledge of HD. That's when I left for home. Its also when I realized for many years I was one of those kids she was talking about.
Yes it was a long night. Would I do it again? In a heartbeat.
Luther Vandross, Dionne Warwick, Whitney Houston and Stevie Wonder
Am I tired? Let's see. I go off to pick up my prescriptions. I walk as I'm too tired to drive. After picking them up off I go to the copy shop to finally get that Advance Health Directive copied and mailed. Then on the way home I drop two copies that were in between the original and another copy. I don't notice it until I stop for a quick Twitter break (I told you the other day I've become addicted to Social Networking).
So when I notice the two copies aren't in my hands I have to walk halfway back to Kinko's to find them, untouched. Thank goodness as they have my Social Security and Driving Licence on them. The only number I didn't put on it was my Green Card ID.
Tonight I also had my book club meeting. It went well, but I'm more excited that the club decided to go with my choice next. I had just started rereading The Guests of the Ayatollah by Mark Bowden of Black Hawk Down fame. I am finding it very pertinent to the current Middle East tensions. Although the book deals mainly with the Embassy takeover, the underlying current is the change of Government in Iran based on the unhappiness with the American based Shah.
Today's Double Feature consists of two cuts by Duran Duran from their 7 and the Ragged Tiger album.
Of Crime and Passion
I Take the Dice
One last song, Mike Oldfield when he was still innovative.
Mike Oldfield 5 Miles Out 1982
I'ms [I'ms-need I say more?] beyond exhausted and its only 9:00 at night. I didn't slept a wink last night so Heigh Ho! Heighi Ho! Off to bed I go.
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