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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.

Thursday, October 11, 2012

Telling Kai

I called my son Kai tonight to tell him.  There was a long silence.  And then he talked about how important I’d been to him.  (Even now, just shortly after we talked I can’t remember his exact words.)  But he was stunned.  There were long silences as each of us struggled for something to say.  He told me that he couldn’t really handle what I was telling him.  

I felt his love and caring.  He told me how much he looked up to me and respected me.  We both felt a sense of immense loss.  He’d assumed that I would always be there for him but suddenly he realized his own mortality.  We have never had a conversation in which both of us expressed much emotion at all and certainly nothing remotely like this.  I realized how much more painful this was going to be for Kai than I had anticipated.  And it touched something very deep within me, too.  I felt my loss powerfully and emotionally, too.  We both cried.  And neither of us ever cries.  

It’s almost like he’d realized for the first time that his life would not go on forever.  He’d been waiting all his life for the perfect job or the perfect woman, and now he was beginning to see that he must choose and couldn’t wait forever.  He’d been protecting himself emotionally from the pain of intimacy.  He’d been unwilling to commit himself to a work because it would mean turning away from other possibilities.  “I’ve wanted to keep my options open.  I didn’t want to move into real adulthood.”  But he thought that learning of my disease would turn him around.  I don’t know what will come of it, but it occurred to me that this could be a turning point for him.

It was, by far, the most intimate encounter we’d ever had.  I am deeply grateful.

I feel overwhelmed by the prospect of the future; every time I contemplate it, my stomach drops out.  But once again, I am realizing the Now is okay.  In fact I feel privileged to have such moments with my children. 

One of my meditation teachers recounts visiting one of his former teachers.  He’d heard that the monk had progressive dementia.  When my teacher asked him how he spent the days, the monk answered, “Oh I just sit here and watch the dementia roll on in.”  I believe that I know something of what he means.  Will I be able stay so deeply in the present?  This is not the tragedy for me that I would have expected.  In fact, there seems the possibility that it will remain an interesting journey.  What’s next to go?  What will it feel like?  What will it be like to be deeply demented?  Will I retain consciousness of my “self” or will that go, too? 

Of course, just to ask those questions requires a level of consciousness that I will lose.  I’m at the very early stage of the illness.  Likely these questions will lose their meaning.  But, at least in the Now, it seems an interesting journey.  As things go in this world, this is not a tragedy of Olympian proportions.

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