What is my “self” now that I am changing so drastically? This is the question the Buddhists speak of. Their response? There is no self.
The way I define my “self” is as an intelligent, independent, vigorous, strong, coordinated man with the ability to relate sensitively to others. As I’ve aged, some of that self has gradually been disappearing: I’m no longer so strong, vigorous, or coordinated as I once was. To the extent that I’ve hung on to this old definition of myself, it’s been painful. I’ve had to work at letting go.
And the Alzheimer’s will greatly change other parts of my self-image. I won’t be independent, intelligent, or (most probably) as sensitive to others’ needs. So who am I? Can I acknowledge—and not just intellectually—that my “self” is not a constant entity? It has changed repeatedly throughout my life, especially during my depression. And it will change even more dramatically. That’s going to be more painful than it has to be if I hang on the self as something that I should cling to and keep trying to be that self.
I’ve been thinking about the deeper impact of my memory loss. At our leadership team meeting a week or two ago, I was asked how much we’d given of the amount we’d earlier pledged to a needy family within our community. Since I’m the bookkeeper, it was a reasonable question. Not only did I not know how much was left, however, but I also couldn’t remember paying them anything or even whether we’d pledged ourselves to pay it in the first place. Then I checked my records. Only several months ago, we had a long discussion over several days that I’d initiated. And I hadn’t remembered any of it. My memory has always been bad, but not this bad.
That’s embarrassing, of course, but it also represents a loss of some degree of context for daily life. Full participation in any event or conversation demands knowledge of what’s already happened. As things disappear into my past, I lose that part of me.
I’ve been a writer for many years. Since I write about environmental, political. economic and spiritual issues, a large part of my creativity comes from juxtaposing past events in new ways so that new patterns can emerge. This is the genius of my friend Ray McGovern whose memory seems almost photographic. He knows and can call upon the past to a degree that most people can’t. I certainly can’t and it will get worse. As the disease progresses, obviously, I will have less and less a picture of who I am because I know less and less of my past.
This is a disease of recurrent losses.
I began wondering today whether students from college or medical school classes would at some point be interested in talking with me to understand more of the subjective reality of Alzheimer’s. I doubt that the time has come since the objective changes are not yet obvious to others. (For me those subjective changes seem immense, but I wonder at the value of discussing those yet.) On the other hand, if I wait too long, I won’t have the capacity to speak meaningfully at all.
Thank you so much for sharing your subjective experience of Alzheimer's decline. I am sorry that you are dealing with this, and glad that you have the personal resources and perspective to do so with the flexible, accepting, curious, and helpful attitude that is evident in your writing. My mother "had" Alzheimer's disease; it was "early onset" and she lost most of her language and communication skills by the time she turned 61. She was diagnosed at 60.
I never knew what her subjective experience was because she lost the ability to let me (or anyone) know - at least in words - almost by the time we realized what she and we were dealing with. This was decades ago, before Alzheimer's had become a familiar term.
Especially because hers was such early on-set, I have a better than average chance of going down that same path, and think about it more than I'd like to. (I just turned 63.) Your attitude is refreshing and offers me hope beyond the usual hope that "i won't get it". Yours offers me that hope that I can "get it" and still welcome the experience, if it becomes my own reality.
As my husband is fond of saying, "when you argue with reality, you lose, only 100% of the time". Your perspective offers me the hope that I can walk this path, if it turns out to be my path, and not end up arguing with it.
THANK YOU, dear David. You are compassionate and courageous. The self, as you point out, is constantly changing. Who knows what you, or any of us, will be tomorrow. But today, I thank you from the bottom of my heart.
Blessings to you, and may you experience the bliss of eternal moments,
Thank you for your response. It gives me great joy to know that something good for others can come out of this experience. I'll remember:
1. When you argue with reality, you lose 100% of the time.
2. The self is constantly changing. Who knows what you, or any of us, will be tomorrow.