I’m writing from Coral Gables Congregational Church in Florida, where I’ll preach this coming Sunday. Emily and I are leading a Saturday retreat for individuals and care partners living with early to mid-stage dementia. It’s beautiful outside: sunny, warm and humid. We’re staying in the church’s guest house, just down the block from the Biltmore Hotel. You should see the pool.
My internal clock is a bit off as I was in San Francisco last week to speak at Church Divinity School of the Pacific (one of the Episcopal Church’s denominational seminaries) and the Sequoias at Portola Valley, a lovely retirement community in the rolling hills of the Bay Area.
Traveling and speaking this way has been both a dream come true and a surreal experience. In some ways, I feel like I’ve opened up Pandora’s Box. When I tell my story, all kinds of people (young and old) start sharing their experiences. That shouldn’t be surprising, as one in four people over the age of 85 and one in ten over the age of 65 have some form of dementia.
Someone suggested that I might not want to use the metaphor of Pandora’s Box since the word implies “bad stuff happening to good people.” In case you don’t remember the myth, it goes like this:
Once upon a time, there were two brother gods named Epimetheus and Prometheus. One day, Prometheus discovered the secret of fire, and this angered Zeus. As punishment, Zeus chained Prometheus to a rock for many years. And if that wasn’t enough, the great god went after Epimetheus by way of a trick. First, Zeus ordered Hephaestus, the maker of all things, to craft him a daughter out of clay. Zeus named her Pandora, brought her to life, and gave her as a bride to Epimetheus. Zeus then gave the newlywed couple a gift – a locked box (perhaps, it was a jar) with a note that said, “Do not open.” Attached to the note was a key.
Of course, you know what happened next. Pandora’s curiosity got the better of her, and she took the key and opened the box (or jar). When she raised the lid, lots of bad things – envy, sickness, hatred, disease, war, pestilence, famine – flew out into the world. By the time Pandora closed the lid, it was too late. The world was no longer perfect.
Epimetheus heard Pandora crying and came running. She opened the lid to show him that the box (or jar) was empty. When she did, one little bug flew out, smiled, and flew away. That little bug was named HOPE. And that little bug made all the difference, giving hope to people that we could make the world a better place to live, in spite of the bad stuff. And by the way, Zeus’ heart was softened, and he freed Prometheus.
So, in speaking openly about dementia, I feel like I’ve opened Pandora’s Box because I’m talking about something that we all dread, but I’m also offering hope that we can discover the fullness of life in spite of (or perhaps because of) dementia. I’ve also come to realize, like with Pandora’s box, there’s “no going back" to the way life used to be, now that I’ve publicly acknowledged that I’m dealing with Frontotemporal Degeneration. I’ve closed some doors and opened others. My challenges and limitations can’t be kept secret any more, which is why so many people refuse to recognize cognitive problems and seek help.
I’m hopeful that someday there will be a cure for this disease. I’m also hopeful that I and others living with dementia can improve the quality of our lives – our bodies, minds and spirits – by being honest, transparent, and willing to make some changes in the way we live. I’m hopeful that by acknowledging the reality of dementia, this much-dreaded and feared disease will be a stop along the way of our human journey and not the final end of the script.