Life on the Roller Coaster



Self-portrait: Elation

      It's been hard -- pretty much impossible, as proven by the dearth of postings -- for me to write anything coherent recently.  I start, in despair, a piece on my trials, tribulations and the all-encompassing depth of my dejection -- only to be struck by a wayward ray of emotional sunshine and a mood shift that swings me from hopeless to hopeful.
     I then launch a post filled with optimism and Peale-ish positive thinking, but gag on the saccharine syrup of a too-rosy outlook and unrealistic cheer.
     It was pretty appropriate, I guess, that a recent outing was to Santa Cruz, home of the famous seaside amusement park. I am a human amusement park these days, going up and down, up and down like a carousel -- or UP and DOWN, UP and DOWN like a roller coaster.
     And I sometimes find myself stuck in the middle, neither up nor down but in some sort of emotional limbo. I don't paint, I don't write, but instead just spend my time spending time: re-reading books that didn't interest me that much the first time around, playing solitaire on the computer, or escaping into multiple and extended naps.

Self-portrait: Despond

     Which are probably pretty good signs of depression, I guess, and probably reasons to check my meds. But I'm bothered more by the upping and downing, the ol' roller coaster.
    And I guess I have reason to be up and down. The good and the bad are happening back-to-back. It's all just part of this crazy disease.
     My most recent visit to the Forbes Norris clinic gave me plenty of good news, plenty of reason to be up. My doctor said my symptoms are progressing more slowly than the average, and that I have plenty of reason to be optimistic about an extended life span. The down part, hiding within the good news, lies in this question: are we talking about just an extended life, or about extended living? Not, as we know, necessarily the same thing.
    More good news at the clinic: my legs are not severely affected as I feared, with the right just slightly weaker and the left pretty darned normal. The stumbling and falling I've been experiencing can probably be alleviated simply by taking more care – and by wearing an AFO brace on my right leg. But the bad news is that it's a brace: another step down the old slippery slope of ALS.

     Good news on the home front is that I'm planning to fulfill several goals from my bucket list. Scott and I are going to the San Juan Islands in June and to see the Minnesota grandkids in August, my daughter and I are going to Maine in July, and my super-duper sister-in-law and her husband (also pretty darned super) are coming to visit in May. I have volunteered my services to the ALSA, I finally started the cover letter to submit my long-waiting tomato book for publication, and I am researching possibilities for art show featuring my ALS paintings.

     But just when I'm feeling so good about all these plans and proposals, down goes the roller coaster in a rush of worry. Will I be able to travel? Will I be a burden to my daughter instead of a companion? Will anything come of my hopes for my art and my book? Are the other things on my bucket list just pipe dreams?

     I don't know. And that's probably where this up-vs-down-vs-trapped-in-the-middle series of feelings really comes from: I just don't know. That is, of course, the hardest thing about ALS, the not knowing. Oh, you know where you're going to end up. You just don't know how – or when – you're going to get there.

    I just want to get there on my own terms. And not by riding a roller coaster.