Purge

Sometimes I have all sorts of stupid ALS shit floating around in my head and I am reluctant to post, but then I remember the reason I started this thing to begin with. With any luck I'll purge all this stuff here and won't then burden the outside world with all. this. shit.

First. I was visiting the still-active blog site of a now-deceased ALS patient and found this link. It's short, very powerful. I listened using Windows Media but there is a Real Media option, too.

Second. My stupid left fingers are now all standing separate. This makes me madder and sadder than I can tell you. Just writing about it, looking at my hand, I feel the eruption beginning to form in my stomach.

Third. Lynne and I went to Villanova PA for a party at Michael and John's totally fabulous home. We met lots of interesting and wonderful people, and our hosts were gracious and kind. All was well until Sunday as we were getting ready to leave--my left arm cramped terribly as I was getting dressed and I had to call for help. The action I was trying to perform has been more troublesome of late and Sunday it just wasn't happening. I pushed--too hard--and was punished for my arrogance. Who the hell am I to think I can outwit this fucking disease. I tell myself I won't accept further deterioration but the goddamn progression continues anyway.

So Lynne assisted me. This little scene resulted in some conversation about what's to come, what I will and will not be able to do. I do not want Lynne to have to care for me (beyond shepherding me out of some bar) so I declared that, at some point, the road trips would end. I don't think she'd mind helping me, but I sure as hell mind it. She's my friend, I won't have her become my nurse.

Naturally this made me think about other things I will have to end. When is the right time? Earlier, so the memories are pleasant? Later, because I will hate to step away, say goodbye? I've been quite a mess thinking about this.

Lynne and I made it to Mass before we left PA. My hands and arms were twitching so violently it looked as if I had Parkinson's. And the twitching everywhere else--including my ass-that-is-as-wide-as-a-trailer--was the same. It worried me that, if the twitching in my arms was so apparent, what did the people behind me think about my big, jiggly butt? Oh well, I'll never see those people again...

And finally, a report on my right arm and shoulder. It becomes more and more difficult to bear weight on the elbow/shoulder, which has been my recourse since my wrist became useless. It's harder to raise my arm, and quite painful when I try to extend further than my shoulder will permit. I have been doing my PT homework but I am beginning to realize that will only do so much.

So today I acknowledge that I am worse. ALS is creeping, none too gently, sort of like an invading army on a weak and helpless country. Before too long, the language and the customs will change and the little country won't recognize itself.

Okay, purging done, for the moment. If, after reading this, you want to purge, please know that you are welcome.