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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Monday, November 12, 2012

Sharing with My Church

At the end of our Eighth Day covenant members meeting yesterday, I talked about my Alzheimer’s.  It was a small group, but—as I guess I should expect by now—it was a very good, close time.  People listened carefully and we talked some about that this would mean for the community.

An older friend was sitting one person over from me, obviously upset and then beginning to cry.  I had not anticipated her reaction but quickly realized her husband died several years ago of a different (but symptomatically similar) dementia.  I had actually noticed the symptoms before I had heard about the problem, but was told that the family didn’t want to talk about it.  Things were different twenty years ago, however, and there was not the same opportunity for such sharing. 

But at yesterday’s meeting, I very willingly interrupted my story and she did share her pain.  I had mentioned how much closer Marja and I were becoming because of the disease.  I had also mentioned the “interesting adventure” aspect of my disease.  At that point she broke down completely, sobbing.  She said that had been one of her husband’s reactions, too.  Her sobbing seemed to be a real catharsis for both her and the community

I told everyone about my fear of abandonment and about how I hoped that naming the disease and my fear of abandonment now could help at least some them to not abandon me.  I gave some specific examples of how naming things might help.  I realized that I hadn’t defined them even for myself before.

For instance, whenever my memory fails or anything else happens, I hope the other person (or persons) and I will all be able to acknowledge freely that, given the disease, it’s only to be expected.  We won’t have to ignore the elephant in the room or retreat into embarrassment.

I hope that I will be able to acknowledge and express my feelings whenever it’s appropriate.  I’ll feel less isolated than I might if I felt I had to hide or repress the feelings.

It won’t be perfect, of course, but I will save me the embarrassment of having to explain away my symptoms, for instance, my difficulty in remembering.  I won’t have to make up some excuse; it might even give me the courage to let go of my anxiety and embarrassment over whatever dumb thing I just did.

The community’s response was really wonderful.  Almost everyone responded.  I talked about the paradoxical blessings: the closeness between Marja and me, my conversations with Kai, the opportunity to let go of analytic thinking.  People seemed to be able to understand the paradox.  We talked about the support that I would need and, even more, that Marja would need.  People thought we could do it together.

As we were closing the meeting, I realized that we may have others in our small community who are undergoing the same process although it hasn’t been obvious or mentioned publicly.  If so, it will be a heavy burden for the community to carry all of us.  I would not be surprised if my public announcement and its positive reception didn’t encourage some similar response from others in the community who could begin to acknowledge the issue and work with it.

My immediate reaction to that scenario is not something I’m particularly proud of.  As I thought of our having others in a similar situation, I actually resented the possibility that they would lessen the specialness of my situation.  If several of us are demented or heading that way, how can any of us be seen as unique, as having a special place in the community?  It harkens back to the fact that I was not really so disappointed with my diagnosis, for it made me special.  It seems to me bizarre, but that was my reaction.

My other reaction was to think about the larger community.  We’ve been working hard to bring younger members into the congregation.  How many are going to be interested when they know about demented people among the members?

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