Wow! My anxiety has sky-rocketed! I realize that this blog is not about the neuroses of David Hilfiker, but surely there is something here that many with Alzheimer's experience. One of my readers recently emailed me. She’d been diagnosed with Alzheimer's in 2008. Recently, though, she was thoroughly retested and the results were completely normal! The previous diagnosis had been in error; her symptoms then had been significant but temporary, caused by something else. She didn’t have Alzheimer's. She wrote, “The news is wonderful for me and my family, but I feel as if I have lost my moorings again.”
After almost a year of believing that I have Alzheimer's and now finding myself with some normal test results, what if I’m not heading for dementia? Or, worse, what if my symptoms are imaginary, all in my head? Then I lose my sense of self. My identity created over many months, accepted by friends, readers, and myself, fades away. What if I’m not who I thought I was?
Since I found out about the test resuslts last week, I’ve been more anxious about not having Alzheimer's than having it, which doesn’t make any logical sense. A more appropriate reaction might be:
I don’t have Alzheimer's? How wonderful!! The sentence I’ve been living under has disappeared. Hallelujah!
But, no, I feel anxious. My situation is different from my reader’s in that there’s no evidence, yet, that my cognitive impairment has changed. Nevertheless, I also feel unmoored.
Just to be clear, I still believe that my cognitive impairment is real and progressive and either is, or will progress to, Alzheimer's. But the uncertainty itself has unmoored me.
I’m sure I’m not alone in my feelings. As I wrote in the previous post, anyone with Mild Cognitive Impairment experiences a similar disorientation, in large part because of the uncertainty about exactly what their diagnosis will mean for them. And all of us with progressive disease will experience continual changes in who we are.
The emotional/spiritual question that we face is: Can I retain equanimity in the face of such shifting in the sense of self. Can I recognize at a deeper level that my self is always changing and let go of my attachment to whatever the current sense of self is? I’ve written about this before (here and here), but this feels more wrenching. So, it’s an even greater opportunity for spiritual growth, for learning to let go.