THE ODDS (Debbie Does ALS)


5.12.2009

UPDATE TIME

  1. Got hit. I don't think I mentioned that I was hit by a car last week. I was driving home, going down Wilson Blvd. in the right lane. I stopped at a red light. There was a Black Crown Victoria in the left lane. The light turned green and Mr. Crown Victoria started creeping over into my lane -- it was surreal seeing him come closer and closer -- I hit my horn and my brakes and heard my driver's side mirror pop. Mr. Crown Victoria pulled over and I followed. I got out of the car yelling at him, asking him what the hell he thought he was doing; he said he was moving into his lane. I advised him he was wrong, that it was my lane because I was already there! I looked at the side of my car and put my mirror back into its proper position and was shocked to see there was absolutely no damage to my car. There was no damage to Mr. Crown Victoria either. I told several it was as though we were gladiators in Rome; we were side by side at the same speed, and only when we put on the brakes did the mirrors pop. I can't believe how lucky I was.
  2. Invisible at the Metro. Today I faced something else I cannot do. I had to take the Metro into Washington for Advocacy Day and, since I did not have a farecard, I had to buy one. I prefer to use my credit card because it's easier than using cash, and I generally don't carry much cash anyway. So. I'm at the machine and need to insert and withdraw the card quickly. Well, you guessed it -- I cannot insert and withdraw quickly. Each one of my attempts failed and negated the transaction. Fighting back the frustration I looked around to see if someone could help me. Passersby would not look at me. No one responded. I felt totally invisible, frustrated, angry, and a pity party was beginning to take shape. I spied a man in fatigues and, since it has been my experience to receive only respect and accommodation from servicemen, I honed in on him and asked if he would help me. True to his genre, he came to my aid. I don't know your name, but I am very grateful.
  3. ALS Advocacy Day. Today was a long day. I was up super early and out the door so I could work for a while before I went to the 7:30 AM breakfast in the city. The breakfast was nice (but a tad long) and I sat with some nice people from Pennsylvania. After breakfast, I caught the bus going up to the Hill as my first meeting was in the Longworth building. I met the other members of my group and off we went. We hit the offices of four Representatives -- including the one for my district -- and one Senator. We didn't meet with the actual Members, only their legislative assistants. I was disappointed by this and I couldn't help but think this same attitude is partly responsible for the inattention ALS research receives. Perhaps I'm wrong, but it's how I feel. The people in my group were great and I hope I'm able to connect with them again.
  4. High-intensity twitching. I don't know how long it's been going on, probably several weeks. The muscles in my arms and my left hand, both my legs, my back and shoulders, and my stomach have been twitching to the point I can see it from the corner of my eye when I'm talking to some one. It's disconcerting and it makes me wonder if a change is in the offing. Oh well, whether it is or not, I can't change it. I just wish the twitching wasn't so violent.
  5. New York City. Random shots.

















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