Thursday, 3 March 2011

I'm Baaack....

It's tough to know how long this will last, although I have two weeks of the work life left... who knows how much I will be doing... and how much there will be to write about. Maybe my life will suddenly go from 65 miles an hour to zip and there won't be anything to say.

Fat chance.

The condition of the human race is to - in general - communicate. I am very much a communicator. So there will always be something to speak of, gripe about, rave over... etc. There is so much going on in life. OK, so I'm closing one chapter, and that is not easy. But I'm also looking forward to the next chapter, and we will see how that goes. I feel optimistic but reluctant to run into it at the same time. Been working so long, I really don't know how to do anything else.

And there is that whole identity thing. So much is wrapped up in what one does rather than who one is. What's the first, maybe second, question that comes up in a conversation with a new person? "Oh, what do you do for a living?" In the United States, we are what we do. So in two weeks, I will just be Aislinge Kellogg, private citizen, not what I do... because I won't be doing anything.

A daunting thought, I grant you.

Not that I won't have anything to do. I have correspondence to catch up on, household projects that have needed doing for a long, long time. (Doesn't everyone have those? You betcha. That list of things that somehow need doing but never get done, even when you had time. Now, you are a captive audience and they are still there, waiting for you. Humming to you. Calling your name... possibly screaming it.

Ugh.

I do hold a lot of anger toward my mother but this is something that I cannot blame her for. Who knew in 1967 when she got pregnant with me that anyone in our family had muscular dystrophy? No one. Missed all of us until later generations - my grandmother did not show symptoms until she was in her 60s. My mother, her 40s. Me, my 30s. I didn't get a diagnosis until 25 April 2008 - from my early 30s until I was age 40, I had something slowly going wrong and did not know what it was. And the doctors I saw... Luis remembered the neuro guy that informed me that only men get muscular dystrophy (I had read something on it and asked) and it never shows up in women. What an idiot. He was not only wrong, he was almost exactly the opposite. Muscular dystrophy is a immunological condition at heart and it is most commonly women who suffer those kinds of diseases.

The world is full of stupid people.

So it is just as well I never wanted kids. As it clearly shows up earlier and earlier in each successive generation, there is little wonder how fast it would have shown in any children I produced. This is really reason 5,398 not to have kids, so it wasn't a hard decision by any means, but it is just that much better. Like somehow the gods saw fit not see us have children (my now-40 cousin hasn't any kids and she, like me, has the dreaded gene and the full-blown disease. Let's neither of us have kids!

It won't kill me - well, it won't kill me directly. But I can't believe the shit that comes up out of this. Here's a fun one: just about every week I obtain some kind of injury somewhere. Now, I'm sure there are times when Luis would love to slap me but he would never hurt me. I mentioned to him on Monday that my upper left arm hurt and he said, "Yeah, you crashed into the wall last night." I was mystified - you would think I'd remember that. And then he piped up, "You crash into stuff all the time."

OH. MY. GODS!

I knew I careened into walls all the time - and I do it everywhere. Work, home, patient calls, my parents' house - all edifices I know all too well. I mean, yikes! I was always worried that someone would see me and I'd be embarrassed (not to mention that people might think I was hitting the bottle!). I was always sure that no one at work saw me at work do it - for one thing, if they had, they'd have walked up to me and said, "Oh my god, are you okay?!" while surreptitiously smelling my breath for alcohol. (Which would be ironic since I'm almost the only teetotaler there! I love my coworkers and I'm a little envious that they are all appreciative of wine while it is completely wasted on me!)

If Luis is seeing it, how many others do?

Or the shaky hands. That's always my favourite. If I forget to take my medication on time or don't eat in time, I get the shaky hands from hell. I'm very self-conscious about them. It is a totally different thing to write about them - I seem distant from it - but at work I find myself sitting on them or hiding them in some fashion if they begin to get tremulous. I hate that.

And how about the sleeping? (The appropriate answer is "what sleeping?"). Without a cocktail of meds, I don't sleep. Not at all, not a wink. Weird, right? I take five different things to go to sleep - but that's okay, because recently all the flare-ups are coming on between 0100 and 0500 in the morning and then that eats up several hours during which I nap but really don't sleep.

What a life.

It isn't a bad life and it isn't a wasted life, but it is a strange one. I mean, it has its ups and downs and it is still good in that I can walk, drive (ha, ha - I drive better than I walk), do things. In fact, I have a tendency to overdo things because I want to be strong and able to do what other people do - even though I can't. There isn't any shame in that but I don't feel good about it.

Ah, well. Time to go to bed tonight. Wahoo. Nothing happened. Not bad.

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