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Restoring Dignity

As one who has worked with persons coping with Alzheimer’s disease and their families for over twenty years, I found Jane Eisner’s May 18 review of Sarah Leavitt’s book, “Tangles: A Story About Alzheimer’s, My Mother, and Me,” to be nothing short of tragic.

Of course, the episodes chronicling Midge Leavitt’s loss of memory, loss of executive functioning, loss of self-control are all heart-wrenching. But what also profoundly saddened me was the virtual absence of any episodes that were positive and enriching: moments of tenderness, of laughing together, moments of physical touch and warmth, moments of just sitting outside holding hands and enjoying the sunshine.

To be sure, it may be that none of these was experienced by the author. But her narrative, and in some ways the review itself, unfortunately perpetuates the myth that when people lose their cognitive abilities to Alzheimer’s, they also lose their humanity.

In his book “The Moral Challenge of Alzheimer Disease,” Stephen Post writes that our assumption that people who lose their cognitive abilities will eventually lose their humanity is based on our living what he calls a “hypercognitive” culture: We define ourselves and our worth by how well our minds and thinking skills work. For us, the Cartesian principle “I think, therefore I exist” has an obverse: “If I don’t think, I don’t exist”

In my experience, nothing could be further from the truth. Those who work with people who have Alzheimer’s know that not only does it not rob them of their humanity — sometimes it is a boon. Sometimes when their cognitive filters diminish, their capacities for expressing a deep spirituality — showing spontaneous love and joy — is heightened.

For all the empathy that we must feel when reading the episodes that Leavitt describes, it is important to remember that what she is reporting is one interpretation of what she and her mother experienced. The phrases “erratic behavior,” “acting like a crazy woman,” even the words her mother used to describe herself, “I’m a nobody! I’m not a real person anymore!” are deeply felt and expressed, but nevertheless subjective descriptions.

Jewish tradition affirms the opposite: no matter what a person experiences, no matter what physical or cognitive losses she may experience, she can never lose her humanity or her dignity. Yet, when we choose not to venture out of our own “hypercognitive” realities and try to better relate to their realities, then it is we, not the disease, that robs them of that dignity.

Rabbi Cary Kozberg
Director of Religious Life
Wexner Heritage Village
Columbus, Oh.


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