How do you live…?

On June 7, 2012, the New York Times published an article (for inclusion in the Sunday, June 10 Sunday Magazine) entitled  How Do You Live Knowing You Might Have an Alzheimer’s Gene? (the article itself is quite good)

I was taken aback by the title. I know that the Sunday Magazine has a distinctly different tone from most of the Times‘ publications, but this just felt so…wrong. It sounded sarcastic and hateful, as though it were spewed from a particularly spoiled teenager’s mouth. “Ugh, how do you live, driving that car?”

Let me state that I do not want to marginalize anyone’s experience with Alzheimer’s Disease or other forms of dementia; I know that there is a huge range and that many people have seen awful, heart-wrenching things as a result of these illnesses.

But I also know of people who’ve had rather positive experiences: the angry and critical father who still recognizes his family but now enjoys spending time with them and actually listens to them; the woman who knows that she has moderate dementia but doesn’t mind it. She told me it was nice not having to worry about so many things. These may be exceptions and not the norm, but they exist.

So, too, do people who’ve seen a mix of positive and negative consequences of dementia. This group is the most common, at least from what I’ve seen. Certainly they wouldn’t wish dementia upon themselves or others, but the experience as a whole is more different than it is specifically positive or negative.

My point is, the idea of “How do you live, knowing you’re going to get Alzheimer’s at some point?” may be an interesting question, but it also reinforces the widespread belief that dementia brings nothing but sadness and pain. And that’s simply not the fact of it.