Fresh back from giving a talk at a conference up in Appleton – the 3rd Annual Palliative Care Conference, put on by Theda Care and the Alzheimer’s Association Greater Wisconsin Chapter. The whole day’s agenda revolved around creativity, spirituality, and dementia. There were family members, people with dementia, and professional care staff – an invigorating blend. Abhilash Desai, the MD who runs the ThedaCare Behavioral health’s Alzheimer’s Center on Excellence is a pretty unusual soul – encouraging and coaching his patients through some of the hardest moments of their lives – diagnosis, adjusting to loss, and when the time comes, letting go.
I was inspired by a great deal in Dr. Desai’s talk, and in a talk by my friend and colleague Susan McFadden, who began her talk about “social death” and stigma in dementia with a quote from William James:
“If no one turned round when we entered, answered when we spoke, or minded what we did, but if every person we
met ‘cut us dead,’ and acted as if we were non-existing things, a kind of rage and impotent despair would ere long well
up in us, from which the cruelest bodily tortures would be a relief; for these would make us feel that, however bad
might be our plight, we had not sunk to such a depth as to be unworthy of attention at all.” (from the Principles of
Psychology, 1890)
McFadden connected social death to studies of how loneliness makes us sick (Hawkey and Cacioppo, 2007, “Aging and loneliness: Downhill quickly? Current Directions in Psychological Science, 16. 187-191)
And suddenly, I was in my mom’s running store, The Aid Station, where I worked in high school. The running movement was just starting in 1982, so work tended to be a little slow. A friend had given me a book to pass the time – by someone named Kurt Vonnegut. The book was called Slapstick, or Lonesome No More. In it, Wilbur Daffodil-11 Swain runs for President and wins on the slogan, Lonesome No More. His theory was that modern times had torn up the fabric of community and we needed to reknit it to survive. I was a bit of a lonely kid – and in Vonnegut’s playful voice, I had found my home. I read it in an afternoon. And after work, went down to the Janesville Public Library and checked out every Vonnegut book they had.
sorry for the digression…memory is funny.
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