April 4th, 2007



I just received the worst news I've gotten in 5 years.

No. Not gonna talk about it here. Not right now at least.

Diagnosis: amyotrophic lateral sclerosis

Here's what's got me upset. About two months ago, my mom started having trouble with speaking. It's gotten worse, and she has trouble swallowing sometimes now too. She's been to see the doctors and they mentioned a couple of possible causes. None of them were pleasant, but most were fairly benign. So my mom told me.

I freaked out a bit when I first heard her with the lisp. She sounds like she's had a stroke or down's syndrome. But she was upbeat and said it wasn't any big deal. This was before the conversations talked about in the previous paragraph.

My mom let me know today though that the preliminary diagnosis is amyotrophic lateral sclerosis. Also known as A.L.S. or Lou Gehrig's disease.

It's nearly always fatal, though around 10% of patients live around 10 years. There's no cure. 50% of patients die within 18 months of diagnosis. 25% of A.L.S. patients have a form called bulbar A.L.S., which is the form that attacks the speech functions first. It's known that bulbar A.L.S. has a faster progression than limb-onset A.L.S.

I'll probably write about it here. I do not want to answer incessant questions about how me or my mom are doing, or deal with a billion I'm sorry to hear thats. Even if it's just one question from a single person, it may come after I've answered the same question for another 10 people. I don't want people to have to walk on eggshells around me, but please get attuned quickly to my body language around this. Yeah, it's all kind of contradictory. Sorry, when I'm upset I'm even more difficult than normal. I could use a lot of support, but that can be best accomplished by just including me in normal activities a lot and just letting me lead any conversations around the topic. If I'm comfortable talking about it, I'll bring it up. If not, be circumspect. I may need to talk then too, but it'll be rough going.

Lastly, please don't talk about this with anyone who doesn't already know for the moment. In particular, mama_sloane isn't on this filter. If my mom hasn't told her yet, I don't want her hearing through the grapevine. I suspect they've already talked, but I forgot to ask. Probably after Easter, all the people who need to know directly will, and I'll open this and future entries up.



Yeah, not going.

Right now, you can find out who is on a panel from the web site. In general. Not which panel. Just if someone is on a panel. And you can find out the titles of the panels and activities, and when and where they are. Have to guess as to what the panel is from the title.

Also, don't fancy attending a non-stop evening drunk-a-thon.

Also, hate the subjects of many panels. Interested in literary science fiction and fantasy. Don't give a rip about movies. Don't care about renaissance faire or S.C.A. or costuming. Don't care about gaming. Don't care about alternative life-styles and particularly don't care to mix it up with my S.F.

Give me written stories. When there's a con that's all about written stories, then I'll go.

For those who do enjoy it, you don't need my permission. Just ain't for me. Have fun. I'll see you in a week.