Since I would have responded the same to my friend
with the diagnosis, I can’t blame them. We’re
close friends. I suppose like everyone
else they were overwhelmed by the news of the diagnosis and needed some time to
work with it. They were the ones who needed the most help, not I. This disease, I’m coming more and more to
understand, is not just about me. In
fact, at this point at least, my suffering is probably less than the suffering
of those close to me. Like everyone
else, I suppose, I would have expected to be devastated under these
conditions. But I’m not. Others are.
At least for now, it’s not about me.
They are both physicians.
He mentioned that people don’t actually die of their disease but of
complications, for instance, pneumonia or severe bed sores. Those who are in better physical shape at the
beginning live longer. I’m in good
physical shape. I’ll live longer.
I’m beginning to hear all sorts of stories about
people who live a long time Alzheimer’s.
I could easily have ten or more years of the disease (especially since
I’ve recognized it as early as I have).
That’s a good long chunk of life!
Jai, my grandson who’s two and a half now, will grow up with me—I
imagine—as that vacant old man sleeping on the couch, like my alcoholic
grandfather. Ten-year-old Otto will
probably remember who I used to be but still his dominant image of me will be
as demented. I will not spend my last
years as the person I have known or as the person I thought I would be.
I’m facing a collapse of so much of what has given me
meaning. What is it actually going to be
like? I will have to find a way to “live
with” this disease. It’s different from
an auto accident, most cancer, and heart attacks we view as killing the “real
me.” But demented is how I will be for
the last 20% of my life. Dementia is my life. Like the quadriplegic, I have to learn how to
live a new life. Can I discover other
possibilities for finding meaning?
Do you take anything for the disease? Have you tried coconut oil? Cannabis? Both are known to be beneficial.
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