A Delicate Dance

Washington DC

This past Memorial Day, our faith community spent the weekend at a camp in rural Pennsylvania.  It was just a time of play with virtually no program: unscheduled hiking, laying in the sun, watching a movie, playing board games, swimming (in pretty cold water) and so on.  What I noticed during the weekend was how seldom my cognitive impairment was even an issue.  I still refer to it, usually obliquely, when I get a little confused or lose yet one more thing, but I was surprised and pleased over the weekend to notice that my community is now quite comfortable with my diagnosis.  There’s no need to belabor it.

The progression of my Alzheimer’s has been slow.  Although I’ve certainly noticed some worsening over the eight months since my diagnosis, it hasn’t even reached the point where other people notice unless they’re looking for it.  The reality is gradually settling in for me that I have a lot of life left that will not be significantly impaired by disease. 

The first months after my diagnosis, the emotional impact of having Alzheimer’s disease was so powerful for me that it became the primary focus of my life.  It tended to overwhelm other parts of me and became almost my identity.  I suspect that period of identifying myself as an Alzheimer’s patient was important to me in order to accept my diagnosis, and the powerful emotional responses of family and friends seemed to encourage that focus, so I don’t regret it.  Once I became public with this blog and other media coverage (among which were an article in the Washington Post and a segment on the CBS Morning Show), my role as a professional Alzheimer’s patient and informal spokesperson for the disease further cemented my identity as a person with cognitive impairment, a special case deserving of special attention.

But as with diabetes or heart disease or even cancer, it’s not an identity; Alzheimer’s is one of those things that happens in real life.

It’s  true that Alzheimer’s is a little different from other serious chronic diseases in that it’s still a taboo subject that needs to be brought out of the closet.  Our cultural fear of the diagnosis makes it more difficult for family, friends and others to see it as normal, as not so different from any other ultimately fatal disease.  But, of course, it is normal!  If almost fifty percent of 85-year-olds have Alzheimer’s, then we’re not talking about something abnormal.

Over the weekend, my primary identity wasn’t an Alzheimer’s patient but a member of my community enjoying the countryside and each other.  I then returned from the weekend to a comment on my post “Normal Aging or Alzheimer’s?” by a reader, a.b.w.  “Beware of the trap of self-indulgence,” she wrote.  It reminded me not to take myself and my illness too seriously, not to get caught up in a special identity.  (That’s a little harder for me since I’ve taken on this vocational role in order to bring attention to the disease and its taboo.  But the danger of self-indulgence is clear.) 

It’s important, however, to acknowledge that having a name (a “label”) for my impairment (as compared to wondering what the hell is going on) has been comforting to me.  It’s given me some sense of the future and allowed me to make necessary plans.  Also, my “coming out” to friends and acquaintances has made it easier for them and me to get past my diagnosis.  We hardly mentioned it this weekend.

Nevertheless, a.b.w.’s warning against self-indulgence is well put.  For me that temptation comes in the form of allowing the name to define me.  I do have cognitive impairment, yet my self is far more than that.  It’s a careful dance.