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"There's a time there where I will forget everybody's name, but inside I'm still here. I'm still me. Inside I'm thinking how much fun I'm having with them. And I, as much as possible, would like to be treated as had been treated before." That's Charles Jackson speaking about his Alzheimer's diagnosis, in a conversation documented by StoryCorps, a national nonprofit dedicated to recording and collecting stories of everyday people. Jackson was speaking for the organization's Memory Loss Initiative, which has recorded more than 1,700 stories of people affected by memory loss due to Alzheimer's, other forms of dementia, or other causes. On this episode of the podcast, I play clips from a couple StoryCorps recordings, and talk with the initiative's senior coordinator, Perri Chinalai. (Visit Perri's website for info about her film "Auntie," which concerns memory loss and the dynamics of kin.)
According to the Alzheimer's Association, Alzheimer's is a progressive and fatal brain disease that affects as many as 5.3 million Americans, and currently has no cure. It is the most common form of dementia, a general term for memory loss and other cognitive disabilities serious enough to interfere with daily life.
Alzheimer's has of course prompted a great deal of medical research, but it also inspires plenty of philosophical inquiry. What happens to the life stories of someone who is forgetting them? Is the story of an experience the same thing as the experience itself? Is a life just the sum total of life stories as remembered by the person who lives it? Are the emotions connected with experiences remembered even after the experience is forgotten? How do family and friends of someone with dementia carry on the stories that their loved one is losing? Do stories really matter that much in the end?
The nature of memory has, of course, fascinated for millennia. Consider St. Augustine's ruminations in his Confessions, Book X, as translated by Edward Pusey: "Great is the power of memory, a fearful thing, O my God, a deep and boundless manifoldness; and this thing is the mind, and this am I myself. What am I then, O my God? What nature am I?" Here, Augustine equates memory and self, even as he is baffled by them both. This equation is part of what makes Alzheimer's Disease so painful for so many -- if a loved one loses his memory, it would follow that his self is lost, too. But what Charles Jackson says above seems to argue against such simple math. Or at least, seems to argue that some memory does remain, or some essential piece of self that Alzheimer's cannot erase. And Jackson is not just speculating about his own future; he was caregiver for his mother, who also had the disease.
What remains beyond memory? There is still emotion, sensation, there is still touch, there may yet be language, there is still the community memory of those around the person who is forgetting, and there is still legacy. Beyond that, mystery. And perhaps those of us whose memories remain intact (for the moment) can sound out that mystery in relationship with people who are losing theirs. Or, as Charles Jackson reminds us, maybe we can just have some fun. Whatever the case, StoryCorps' Memory Loss Initiative reminds us, powerfully, to communicate.
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If you haven't heard it already, I hope you'll also check out the last episode of the podcast, in which I explored some similar themes with Anne Basting, author of "Forget Memory: Creating Better Lives for People With Dementia." Anne tends to create wholly imaginative stories with people at middle- and late-stage Alzheimer's, whereas the Memory Loss Initiative more often attracts people who are in the early stages of losing their memory, and who tell their own life stories. Both, however, have a flexible approach that Anne says meets people "where they are."