Saturday, October 30, 2010
Termites in your brain?
This morning when I flicked into a web site for folks with ataxia, and their caregivers, I accidentally opened my registration page. I seldom look at it, and so I was surprised to be reminded that I had joined the online group on December 12, 2002.
Good lord. That was almost eight years ago, just a few months after Sally, my wife, passed on to wherever wonderful people spend eternity. Earlier that year Sally and Marie, my daughter, were with me when a gifted neurologist said I had olivopontocerebellar atrophy, known to its friends, if it has any friends, as OPCA. It is a form of Parkinsonism sometimes called multiple system atrophy, or MSA.
There are any number of online sites where people with curious ailments share their feelings with each other. The one I plugged into this morning showed that I’ve posted 1,049 separate messages there. Not long after I joined I wrote a little book about OPCA. What I wrote in that book, and in most of those messages, is out of date already. And OPCA is still a mystery, incurable, progressively destructive, like a swarm of termites making themselves at home in a brain.
While I was looking at that 2002 posting I thought about how much I’ve learned about OPCA since them.
In 2002 I could still drive my grandkids to karate lessons and cheer them on in their school plays and games. I could still go to church, to a movie, to a ball game, to the library and the mall. I could board a train for Chicago and walk around the Loop with nothing more than a cane. I could walk the dog, use a broom without wobbling, talk on the phone without mumbling or gasping, get up from a chair without working out a strategy, remember my social security number and read a book for as long as I liked without falling asleep, losing my place or dropping the book.
The good part is that I remember thousands of those happy times with family and friends. I can relive the joys at any time. I have friends I would not know except for OPCA in our lives. I’ve known the patient love of my children and their children and countless friends, and the loving courtesies of strangers.
I’m not sure what it means, but God, who is Love, is there, inside that OPCA. Someday there will be a cure for OPCA, but God will still be there. I acknowledge with a smile that there’s no cure for God.