The Community Responds

Washington  DC

I’ve received almost twice as many comments to the last post as to any previous one.  I’m deeply moved by those responses.  Not only did the comments and direct emails offer me much support for continuing the blog, but they also supported my need to write only when I had something to say and not to feel pressure to fill up the space.  Those responses confirm my sense of community with you who have gathered around this blog.  I am profoundly grateful.

Several of the comments offered specific perspectives that I'd not explicitly considered previously and helped me understand better what I and this blog are about.  I’ve responded to each of them personally, but I’d like to highlight here some of their teachings.

One reader emailed me directly with a story remarkably similar to mine.  In 2008, after noticing significant confusion, doing poorly on screening cognitive testing, and having brain scans suggestive of AD, she began quite intentionally to live with Alzheimer’s, joining a support group, writing a memoir, involving herself in advocacy, and so on.  She discovered this past summer that she is, in fact, cognitively normal, and very likely does not have Alzheimer’s.  Her entire story is fascinating in itself, but what she specifically wrote to me about was her difficulty giving up her previous identity as a cognitively impaired person.  It’s been harder than she’d realized to think about her future as a normally competent person.  Even after thorough neuropsych testing showed no impairment, she continued to limit herself as if she were still a person with Alzheimer’s.  So she’s changed her attitude to consciously reminding herself she’s normal and wants to act that way.  It’s made a great deal of difference in her life.  She and I both recognize that our situations are somewhat different from each other’s in that she no longer feels impaired, but her experience raises similar concerns within me: Am I making too much of my impairment?  Should I just act as if I’m not cognitively impaired despite my feeling impaired?  Am I too invested in my diagnosis?  The line between accepting the reality of my impairment, on the one hand and becoming so invested in that reality that I am not open to changes as they occur, on the other, is a fine line, indeed.  It takes wisdom and care to recognize the ambiguity of my situation and not invest myself too deeply in any particular identity.

One person commented that I sometimes seem to be saying, "I’m sorry if I don't, in fact, have Alzheimers!"  It’s a good observation and succinctly put.  I started the blog with a pretty fixed idea of what it would be like: “Watching the Lights Go Out.”  The blog turns out to have become something different.  Flexibility has never been my strong suit.  I have the tendency to feel guilty, as if I’ve promised one thing and delivered another.  It’s an irrational sense that I have something to apologize for.  Many of the comments to the last post have reinforced the idea that I can hold the purpose of the blog lightly, not worry so much about consistency, and let the blog become what it will become.  That’s been a comfort

In her comment, another person suggested that I might “have come to a new stage where less and less are you defining yourself by your ‘illness,’ whatever that may be.”  For me I think I have been defining myself not so much as a person who has an illness but as a person who writes about that illness.  And through the ups and downs of the last months, I’ve been pushed (fortunately) into seeing a broader point of view.  I’ve always been a person who defines himself by what he does; perhaps I can move toward letting go of definitions altogether.

This has been quite a journey.  I’m grateful to have this community of readers accompanying me.