The Universal Notebook: Becoming aware of MSA
March is Multiple System Atrophy Awareness Month. Never heard of multiple system atrophy? Neither had I until my old buddy Earl Cutter was diagnosed with it.
MSA is a rare degenerative neurological disease. Only about 15,000 people in the United States have it. The disease takes many forms, but the variety that Earl has primarily affects speech, balance and motor skills. So far, the disease has blessedly not affected his motor skills. It just slurs his speech and makes him unsteady on his feet. When the Out to Lunch Bunch, friends from high school, goes out for our monthly lunches, one of us has to take Earl by the arm now and guide him. Being as irreverent in our 60s as we were in our teens, we just tell people Earl is drunk.
MSA isn’t funny of course. It’s deadly serious. So one of the best ways to cope with it is defiant humor.
The first thing you learn when an old friend comes down with a disabling condition is that the person is not the disease. You’d think that would be perfectly obvious, but I’m afraid the natural inclination when you meet someone with MSA (or Parkinson’s disease, Huntington’s disease, Lou Gehrig's disease or multiple sclerosis) is not to see beyond the symptoms to the totally normal person thus afflicted.
The cause of MSA is not known, nor is there a cure. The remaining lifespan after diagnosis is about eight to 10 years. That will take Earl into his mid-70s, a fairly reasonable life expectancy – unless you are an otherwise healthy person who might easily have lived into his 90s.
When Earl asked me to think about writing something about MSA, in hopes of raising awareness about the disease and perhaps a little money for research, I didn’t have to think twice. Not only is Earl one of my oldest friends, he’s the person who gave me my start as a journalist. I owe him a lifetime of writing, not just a single column.
Earl was the valedictorian of the Westbrook High School, Class of 1965, a fact the Out to Lunch Bunch rides him about unmercifully. He was also the high school correspondent for the weekly Westbrook American (now the American Journal), primarily reporting school sports. When he was preparing to graduate, Earl was asked to find an underclassman to replace him. He found me. I had not known Earl before he drafted me to be the high school reporter, but we soon became fast friends, bonding through a shared sense of humor and love of language.
I spent a lot of time my last two years in high school hitchhiking up to Bowdoin College to hang out with Earl, and we spent endless summer nights in our teens and 20s hanging out with buddies Chris and Roland, meeting at Deering Ice Cream for coffee, “bombing around” town in Chris’ old Chevy, watching late-night TV and laughing ourselves silly. Back then we were all immortal.
Then we all got married, embarked on careers and raised children. A period of 30-odd years passed, during which we only saw one another occasionally. But the beauty of such old friendships is that you can pick up right where you left off, even after years and decades. The bonds of shared experience and satiric humor are powerful indeed.
Earl taught at Westbrook High School for 37 years. It was at the end of his teaching days that he first began to notice a weakness in his knees that forced him to sit while teaching. When the feeling of his knees turning to jelly didn’t pass, he began the long medical journey to the MSA diagnosis.
Earl says he now wakes up some mornings thinking it might all just be a bad dream, that he will hop out of bed and the imbalance and slurred speech will be gone. When he discovers that it is not a dream, he doesn’t bother wasting time feeling sorry for himself. The obvious answer to “Why me?” is “Why not me?” We are all in this together and we are all expendable.
Living with MSA has given Earl a new outlook on life. Now he knows in his bones how transient and therefore precious life is.
“If I were magically cured and could go back to being who I was before,” Earl said the other day, “I don’t know who that person was.”
But I do. That’s what old friends are for – to remind you who you were before you became who you are. He is the same Earl Cutter he was before MSA, just a little bit older and a whole lot wiser.