Washington DCThings have been crazy since I got back from my California trip!! There have been almost 50,000 page views on the site, over 70 comments, one interview from CBS This Morning, requests for six radio interviews, and lots of emails. It’s been overwhelming but it’s an exciting confirmation of the importance of bringing Alzheimer’s out of the closet.
In response to some of the emails and comments, this post and the next will be about the cultural fear of Alzheimer’s. Curiously, I’m not afraid of this disease, but why not? What is it, exactly, that I should be afraid of?
What was I afraid of before I knew my diagnosis? It’s hard even to remember. I don’t think I ever put it into words. So let me imagine what I would have been afraid of a year ago.
Helplessness and dependency: I’ve always been independent and can take care of myself. It would be awful to have to depend upon another person to tend to my needs. I would hate imposing on them—especially Marja—unfairly, becoming a burden. I don’t want to be helpless.
Loss of intellectual capacity: What I’ve done in my life has been dependent on my intelligence and intellect. To exaggerate a little, I’ve always been the smartest guy in the room. Who would I be if I lost most of my intelligence? How would I spend my time, if I couldn’t use the computer, couldn’t write, couldn’t even read? Everything that gives me joy would be gone. What would I actually do?
Embarrassment: How would I survive the embarrassment of diminishing memory and intelligence? It would be terrible to forget a friend’s name or to repeat myself over and over because I couldn’t remember what I said five minutes ago.
Rage: What if I became one of those people who flies into a rage at the drop of a hat, who yells obscenities, who causes pain to others?
Isolation: How would I tolerate the isolation? People would react the way I’ve usually reacted to people with diminished intellectual capacity, with the embarrassment, even the shame that Alzheimer’s carries. They wouldn’t know what to say. And so they’d abandon me and I’d be alone.
What would it be like to be incontinent of feces? to have to be wiped after every bowel movement into my diapers? How could I tolerate that?
What would it be like to lie there in a nursing home unable to carry on a conversation, unable to relate to anyone, unable to remember who anyone is?
So I was afraid then. Why am I not afraid now? I’m not completely sure but:
· Before I would have feared that even this first level of symptoms would be painful, but instead it’s been rewarding and positive. What does that say about the rest of my fears?
· My fear was based on my assumptions as a non-demented person thinking how awful it would be. But I now realize that because of the stigma and silence that surround the disease, I didn’t actually know what the experience of a demented person was. (I'll write more about that in the next post).
· If I examine closely each of my fears, what exactly am I afraid of? Isolation is really the only one I fear. The rest of it would be embarrassing or unpleasant, but I’m not afraid of them?
· I’ve had no embarrassment in telling others and the response of people close to me has been overwhelmingly positive. My worst fear—of isolation—has been put to rest.
· It seems to me quite possible that as things become worse, my dementia itself will change my reaction to what’s happening. With increasing cognitive impairment, I may not find my symptoms as painful as I feared. Obviously I can’t be sure about that now but, given my experience so far, it seems to me quite possible.
So for me at this point, there is no fear. But I want to read more comments about the inner experience of Alzheimer’s. If you have Alzheimer’s what’s your inner experience? If you don’t have Alzheimer’s but have asked people with the diagnosis about their subjective experience, tell me what you’ve heard. And finally I’d like to hear from people who don’t have dementia but are afraid of it: What are the specific reasons you’re afraid?
So far I’ve received lots emails and comments from people with positive experiences with the disease. I’ve been surprised that I haven’t heard from more people who have experienced the disease from the inside who think I’m naïve, who are saying to themselves, “Just you wait! Tell me in 3 years that it’s not so bad.” So help me out with your comments.
The next post will be about why the fear is so strong in the culture. How do most others perceive the disease and how does that contribute to their fear? I have some ideas.