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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.

Tuesday, September 18, 2012

Keeping Secrets

What’s hardest now is the level of uncertainty.  I think of all these possibilities down the road and follow them on out despite the uncertainty.  I look at each little event in which something seems a little off and wonder whether that’s normal or a symptom of my illness.  Am I using the illness as an excuse to avoid doing what I just don’t want to do?  Or not?

I had my weekly session with my spiritual director yesterday.

She immediately picked up my reluctance to tell people about my condition “too early.”  She asked what I meant by “too early.”  Her question made me realize that I’m mostly afraid of “crying wolf” and then being embarrassed if the diagnosis turns out to be wrong, a false alarm.  After a few of her questions, it became clear that what I was doing was holding on to an image of myself as a careful good thinker, a cool guy who wouldn’t rush in and worry others unnecessarily. 

But is it worth keeping the secret from my community if it means that I can really ask them for support?  As for it being a false alarm, I don’t need to state my diagnosis as a known fact … because it isn’t.  What I’m really going through now is the struggle with the uncertainty about all of this and the fear of the future.  I don’t need to say any more than that.  I won’t be misleading people if I’m having trouble precisely because of the uncertainty.  I want to share that suffering with those who can comfort me.  So even in the unlikely event that the diagnosis were wrong, we could all celebrate together.  I want the community to understand how painful my uncertainty and my fear are here in this present moment. 

I talked with Patty Wudel this morning and got a taste of telling someone without fear that I was crying wolf.  She is an intimate friend, and I love her.  I told her everything especially the uncertainty and my fear of “crying wolf.”  She was quite willing and able to listen thoroughly to my pain, and I didn’t fear the possibility of being wrong about the diagnosis.  I also appreciated her willingness not to feel the need to dwell on my troubles throughout the entire conversation.  We could move easily on to other things that were important to us.

I still don’t see the need to share it with people who are not among my immediate support circle (ie make a general announcement to the church).  My spiritual director’s insight also gives me the “permission” to talk with the family over Christmas, which is far better than having to wait until spring when the diagnosis will be clearer.   

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