BARRY’S JOURNEY – Half on and Half off….
Contemplating a memoir
Today I found Barry lying sideways, half on and half off his bed at the care center. He looked really uncomfortable, poor guy. To make matters worse, he was dressed in big, baggy old pants that I bought him when he weighed over 200 pounds. Now he weighs about 148 pounds. I didn’t notice that he wasn’t wearing a belt as I got him up for lunch. He shuffled into the dining room and his pants were down at his ankles by the time we arrived. This caused a bit of a stir among the ladies; some of the guys chuckled, too. It took the nurse and a couple of aides to get a belt on him so his pants would stay up. By the time we got to lunch, Barry was really stressed out. I was irritated with whomever dressed him — but I was mostly mad at the disease frontotemporal dementia (FTD).
As I fed him lunch, I thought about a memoir writing class I took last spring The Loft Literary Center in Minneapolis. Perhaps this blog, Putting One Foot In Front of the Other, could become a memoir someday. I learned a great deal from the excellent teacher. I was too shy in class, however, to ask the one question on my mind. I wanted to know if FTD could be a character in my story along with Barry and me. It seems like FTD is the evil protagonist in our story. Without FTD, we have no story.
A raging war
It’s almost like there is a war going on in Barry’s poor brain. Sometimes FTD takes possession of a part of his brain — like for the ability to swallow. Maybe FTD has a whole army that surrounds the swallowing part of his brain trying to take it over, but then Barry’s brain fights back and he is again able to swallow, at least temporarily! Then FTD sends out troops to take over speech, standing or walking. FTD messes with his mind all day, while Barry’s poor brain tries hard to hold its ground until it just can’t anymore and surrenders. FTD has won again. Each day the battle wages on and that damn FTD gains more and more control while Barry’s brain retreats. Someday there will be nothing left of his brain — just FTD enjoying the spoils of war. I really hate FTD.
In the memoir class, we had to write about a life-changing experience from another person’s point of view. I wrote about the day Barry lost control of his bowels because it was the day I knew his time at home was over forever. I tried hard to write it from Barry’s viewpoint, but I just couldn’t do it. I could not begin to imagine what he thought. So I imagined FTD as this evil guy taking over the part of Barry brain that says go to the bathroom. I imagined FTD getting a huge kick out of Barry’s humiliation that afternoon as he watched Ellen, his favorite television show.
While I was still at my studio working, the mess spread as Barry tried to figure out what to do. But, of course, FTD wouldn’t let him do anything but grab a beer and continue to watch Ellen with his pants full. FTD would get a huge kick out of me gagging and trying to wrestle Barry into the shower. Then FTD would laugh as I threw Barry’s new pair of pants into the garbage. How do I write a memoir with a character that I hate with a passion?
Back to lunch. Barry’s tablemate is a Russian woman who speaks no English. She said something to us in Russian, Barry stopped chewing, looked at her and repeated what she said in Russian. She smiled at him and I thought FTD, you are really messing with us today — first in bed, then the dropped pants and now this. When lunch was over, I brought Barry to his room and helped him lie down properly. I looked at the front of Barry’s head and imagined FTD trying to figure out its next evil move. Then, thankfully, Barry fell into a deep sleep. All was quiet — for the moment anyway.