When I first thought I had Alzheimer’s, I was given the gift of community. I’d been part of my small church for over a decade, but I’d never been aware of the love that its members held for me. I knew that they admired me for what I’d done and could do; I knew they respected me for my integrity; but I had not been aware of their love for me. This wasn’t, I now perceive, because they didn’t love me earlier but because I couldn’t take their love in, or even recognize it.
What had previously frightened me most about Alzheimer’s had been the anticipation of the isolation that so often descends as friends, relatives, and even family turn away. Alzheimer’s is often seen as embarrassing, frightening, leaving other people uncertain how to respond. Many, even most, just gradually drop away, or so readers of this blog have written me. Isolation was really the only fear I had … especially late one night when my wife Marja didn’t come home at the time I expected her, and I began to have fantasies of living the rest of my life without her..
When, shortly after my diagnosis, I announced it to the church, I could feel that fear of isolation begin melting. Immediately a circle of prayer formed around me. I must admit to not believing that prayer changes things supernaturally, but those prayers certainly changed my relationship to my community. I felt their love and concern.
My relationships with many people from the community changed profoundly (or at least my perceptions of them did). Friends came up to me and assured me that they wanted to stay in relationship, to care for me when I needed caring for. (I knew, of course, that not everyone would be able to keep that commitment; Alzheimer’s is too frightening. Yet I knew that some would. And I knew that all of them sincerely wanted to.)
Throughout the next year, my sense of the community’s love for me only deepened. When I couldn’t remember names or made serious mistakes, people not only forgave me but worked with me and had compassion (without pity) for me.
Most of the love and compassion that the community felt for me had been present, I’m sure, all along. But I was too independent and closed off to sense it, to let it in, until I found myself so vulnerable. At that point I needed it so much that I opened up. My vulnerability, I suspect, melted that protective shell around me, and allowed the love in. Similarly my vulnerability gave the community opportunities to do some things for me, which brought us closer. (If you really want to demonstrate your love for a friend, ask him or her to do something for you that you really need?.) My vulnerability gave them appropriate opportunities to express their love.
What has been amazing to me is how that change has persisted. When I discovered a year later that I did not, in fact, have Alzheimer’s, our deeper relationships endured. They were still offering me love and acceptance, and I was still able to open myself to it.
It seems to me nothing short of miracle. Suddenly at age 67, the self-protection that I had held onto all of my life melted away almost overnight, and I was able to allow in a kind of joy that I’d never experienced.
The gift has stayed with me. I’m very grateful.