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12/17/2003 Archived Entry: "Pre-Christmas Update"
With Christmas bearing down on us, things are winding up to the usual year-end fevered pitch. The kids' last school day is Thursday, and it looks like Linda has a lock on a job. I am taking on a lot more chauffer duty as a result of this new job (she's been "auditioning" for it all week). Also, dog-related duties that have officially been left to me include walking Rupert, playing with him, washing him, taking him to the vet, feeding him, watering him, getting up at night with him, getting up in the morning with him, training him, and cleaning up after him. Well, to be honest, Linda has cleaned up a few accidents that she's discovered, and Rupert's first vet visit is coming up, but they're all Joe-jobs on paper, anyway. Linda and I are at loggerheads over the fate of the poor pooch. She claims she made a mistake in bringing him home and wants to give him away. I have thoroughly bonded with him and want to keep him. That illuminates the division of doggie labor somewhat--the price I'm paying for canine companionship is exclusive possession of all responsibility for his existence and well-being. So be it. Would that it were different, but Rupert's got his hooks in me. Those big green eyes sucker-punched me as I was coasting into retirement. I could no more give him away than I could brain him with a shovel. (Don't laugh, that method of dog management came from a vet.) So until everyone in our family recognizes him as part of our family, I'll be yawning a lot.
Linda has been in contact with a young family who got a diagnosis of ALS a year ago. From the sound of things, they're not handling it well. The husband and wife haven't really owned the diagnosis yet. They've not talked about what it means to each other, made any plans for changing lifestyles, acquired any equipment, nor done anything else to prepare themselves for the progression of symptoms. "Denial is more than just a river in Egypt" (Tom Arnold, True Lies). I take the story of how that family dealt with ALS entering their lives, and add it to the collection of stories I've accrued about other families that get this diagnosis, and I am ever more convinced that I dodged a psychological bullet. I've talked to people who, a year or more after their diagnosis, are bitter as hell; just a vortex of negativity. I've heard about couples splitting up after one gets the diagnosis. I've read the writings of people with ALS, writing about their situations, who thought they were being positive, but the undercurrent of negativity just jumps of the page and bites your chin. No, your lip, it bites your lower lip. No, wait; that little piece of skin between your nostrils. That's where it bites. Man, that hurts. Does that piece of skin have a name? I digress. The conclusion that keeps occurring to me when I add another one of these stories to my piggy bank of ALS tragedies is that I got off easy. My disease is progressing slowly, in fact, so slowly that every few weeks I say, "Well, if this is as bad as it gets, I can live with this". I think back a month or two and recall what I've lost since then. My speech, a little worse. My swallowing, a little slower. My cramping, a tad more sensitive. But its moving slowly enough that I feel no despair. I don't feel like I'm careening towards the grave. Thankfully, it's not like, "Oh, no! A month ago I could whistle like a bird! Now I can't talk!" I imaging that would be much worse than "Well, my speech is bad now, and a little worse than a month ago, but it's been declining for a year". I identify with the latter. And I think I owned my diagnosis the first month I got it. I went through the grief. I got the T-shirt. And I just think that one of the things that helps buoy my spirits is not just the fact that I feel like I got lucky with my prognosis, but the conviction that that feeling is justified.