Be careful little eyes what you see, be careful little ears what you hear — Sunday school song based on Bible passage in Luke
As a lifelong journalist, I’m all about information. Open records open meetings. Free speech. I say no secrets is the best way to run a government and, for the most part, your personal life.
But also in my experience as a journalist in Alabama, Florida and California I’ve seen burnout.
I learned to protect myself but you can’t always. I didn’t want to see the crime scene photos of Chauncy Bailey, a journalist and colleague in Oakland Calif. but after I pushed the photos away I snuck a glance. He was shot in the face with a shotgun.
I cannot unsee that.
Covering the cop beat in Birmingham years earlier a similar thing occurred when a police detective said “Hey this is what we were working on. He threw the envelope with photos of the crime scene. They watched me pull out a 70-something-year-old woman who was stabbed more than a dozen times. I passed the hazing of a cub cop reporter by not throwing up.
So I learned to avert my eyes and steel myself: When a decomposing body of a heatwave victim was taken out of her house; when a female murder victim was pulled from a quarry; when people broke down and screamed in anguish at funerals of children; when a man cried showing me the spot where he found his dying brother, carried by a tornado 100 yards from his house.
When I was offered to cover an execution while working at the Orlando Sentinel, I declined. When a woman threatened to jump off the Oakland Tribune building in a suicide, I chose not to watch as the street filled with onloookers.
But I heard the the eerie simultaneous gasp of the crowd below when she hit the pavement. I can’t unhear that.
I guess i am hoping to give you a strategy, however ineffectual, and as a warning, however meaningful it may be.
I am three years into a diagnosis of Lewy body dementia. The average lifespan after diagnosis is 4 to 8 years.
I am scared. I am sad. I am angry. I am resigned. All those things at different times but I’m also practicing my strategies learned in the past.
That doesn’t mean I will stop gathering information about my disease or listening to others’ experiences in memory care centers, in support groups and in YouTube videos.
On YouTube I watched John and Dawn’s achingly beautiful video. It shows what will likely happen to me. I doubt I will watch it again, because that would be too much. I’m linking it here but don’t watch if you are not up for it right now. Self protection.
I wanted to do something funny with this post. I was going to propose a Lewy body dementia free day. A day where patients like myself and caretakers like my super strong wife, Catherine, and my daughters Hannah, Emily and Claire could have a daylong respite from encountering, talking, reading, watching anything about dementia..Lewy Free Day.
Maybe the symptoms will go away for a day. Maybe that burning feeling on my neck will go away. That my fingers will return to their past nimbleness. I actually took typing in school and could get 50 to 60 words a minute. Now I find myself hunting and pecking.
What if we had one day a week as Lewy Free Day.
We all know that’s a pipe dream. But we can choose a day –i’ll say Monday — to mindfully focus on what is positive in our lives. Watch an uplifting movie, read something not about dementia. Make your favorite dinner or go out. Put off any non-urgent actions related to dementia care or research or talking about new symptoms until the next day.
Don’t even joke about dementia. Finger to lips to anyone who brings it up.
On this day, dementia doesn’t exist.
Lewy Free Day or, to broaden it out, Dementia Free Day. T-shirts could be made:
‘Dementia Free Day’ on the front.
On the back: ‘Don’t forget.’ (or vice versa.)
I’m putting my Dementia Free Day for Monday on my calendar.
Otherwise I’ll forget.