I was resoundingly scolded recently for my approach to this blog. This should be, said the critic, like a journal or a diary, chronicling my physical challenges, my feelings and emotions, on a daily basis. It should not, continued said critic, be a series of stories saved up and written as if they were journalistic assignments.
Fooey, says I. It is my blog and I will approach it in my own way.
That is the way I am approaching my ALS, too. My way. It took me, for instance, a long time to call family members and tell them: the timing had to be right, and I had to have the diagnosis well enough absorbed before I could discuss it with others -- even (or especially?) those I am closest to. Another for-instance: the day after my diagnosis was confirmed, instead of curling up in misery (which part of me wanted to do), I threw clothes into a suitcase, threw the suitcase into my Miata and headed on a road trip to Taos. My response. My way.
The disease is going to progress in its own way, my responses and reactions along with it. And as long as I do no harm, I can see no way my reactions or responses can be "wrong." They may be odd, or different. They will be... mine.
Some days I am upbeat and optimistic, and except for the tangible physical limitations I can sometimes almost forget I have ALS. Sometimes. Almost. Some days (or hours or minutes), I find myself plunged into a deep despair. I cry. I throw things. I rage at the unfairness of it all. Or I write it out. Or I paint it out. Or I just hug the dogs.
And some days, I have absolutely nothing to say.
