I have watched many people hide dementia, as if it is something to be ashamed of or embarrassed about, as if it is a weakness, a punishment, or even a sin. "If only she had eaten less red meat and more green vegetables; if only he had done the New York Times crossword puzzle every morning; if only she had practiced yoga or meditation for the past ten years; if only he had followed the advice of the brain wizards on public television."
I liken dementia to AIDS in the 1980’s, something to be denied, hidden, and spoken of in hushed voices. I can still remember my frustration when the doctor’s assistant couldn’t understand why I didn’t just tell my congregation that I was retiring for “personal reasons.”
I don’t want to live with dementia on those terms. I believe that denial isn’t useful; honesty is important; early diagnosis can result in a higher quality of life; and transparency makes life easier for everybody involved. So, I decided to model that myself.
Like my new friend Greg O’Brien, a journalist diagnosed with early-onset dementia and the author of On Pluto: Inside the mind of Alzheimer’s – I want to be a torchbearer who curses the darkness of dementia and lights the path of grace-filled living with this disease.