Several comments on this blog have referred to this disease as “the long good-bye,” during which the person with Alzheimer’s gradually moves away toward a land into which friends and family cannot follow.
As the one with Alzheimer’s who will eventually move away, however, I experience a different sort of long good-bye … from the other side of the relationship, from a much earlier stage in the disease, and with joy rather than sorrow. I have the privilege to attend my own prolonged memorial service, so to speak, and receive from friends and family their gratitude, admiration and love while I’m still here and can drink it in. A good friend whom I see now only rarely sent me a long email last week, recounting several periods in our lives together in which my presence had been important to her and her husband, expressing her gratitude for my work with the impoverished and its impact on her life, and affirming the depth of our mutual relationship. In reading it, I was transported toward one of those “thin places” between our material world and the world of spirit and mystery.
Her email was especially beautiful, but others have written to express similar feelings and to reaffirm their sense of our belonging together over many miles and many years.
Strangers have written to describe the impact of my writings on their lives. Physicians who read my first book, Healing the Wounds, about the emotional and spiritual contradictions of doctoring, have written me about how deeply the book shaped their careers. Some are twenty-five years into their practice and have read of my Alzheimer’s, which has impelled them to write; others are college students in pre-med wondering if medicine is their calling.
Similar emails arrive regarding my other books, some of my writings, even speeches I gave at their medical school. Thirty years ago I wrote an article for The Other Side magazine about my depression and how it cast its black shadow over my search for God. After all these years, people have written to thank me for it.
These are the kinds of things we could tell each other any time, any day as we live our usual lives, but most of us don’t; it’s almost taboo … at least among men. I don’t think I speak only for myself when I say that we can go for years of deep relationship with another person without ever articulating our gratitude for who we are together, for our love for one another. So often we wait until the person is close to death—or, more often, perhaps, until that memorial service—before we dare articulate these beautifully human feelings of love and connection.
The taboo seems to extend to the one on the receiving end, too. Prior to my diagnosis, I was well defended, good at protective humility, at deflecting, at denying, or escaping these embarrassing moments of praise, or admiration, or love.
This long good-bye of Alzheimer’s, however, seems to weaken the taboo on both sides, evoking those expressions of closeness from others while I am still very much here and permitting me to allow the gratitude, admiration, and love to wash over me. My heart seems to have grown. I can listen gracefully. It is part of the wonder and joy of these months since my diagnosis.
In some ways I’m now in the best of both worlds: not much intellectual diminishment; yet lots more emotional openness. I’m very aware that profound intellectual loss will come later, but I wonder if this long good-bye is preparing us for those later times. I wonder if this period allows the softening of hearts—mine and those of friends and family—so that when I can no longer respond to their words or even understand them, when I don’t even know who they are, our hearts will then be prepared to love without concepts.
There is a mystery here, for which I am very grateful.