A recurring comment I receive from acquaintances is that I am so positive for all that I’m going through, and that I am an inspiration to them.
My response is a chuckle to myself and then to them, I explain:
- The disease my wife and I am fighting is not supposed to reduce my life expectancy. However, it is progressive. This means, that as bad as it is now, the disease will irreversibly get worse as time goes on.
- I am approaching 50 years old. I should have between 30 and 40 years left of this life.
If those two facts hold true, then I have two choices:
- Focus on the negative. In which case, my body becomes my prison. I live the next 30-40 years in a cell focusing on things that I wanted to do, but can’t, and never will be able to do. My life will be miserable, not for a short time, but for decades.
- Focus on the positive, and take enjoyment in the simple things. Nothing matters. I can find beauty in the simplest things. The shape of a petal on a flower, or the reflection of the world on the droplet of water or the way my wife’s eyes sparkle green when she smiles will bring an intense sense of joy.
I choose #2. I’m not saying that there are not occasional visits to #1. There are. When I talk to the insurance companies and have to recount the laundry list of my issues, I fall. That, is a guaranteed fall back into #1. I give myself time to grieve and then put an end to it.
I have a sufficient lack of physically good days that I must make the most of every single one. My “most” is considerably less than a normal persons even on the best days. However, I look at what I can do.
I recently had a string of 6 days in a row! I then proceeded into a spasmodic event that lasted over a dozen hours, pulled many muscles, slightly tore a couple more and left me reeling from the pain. My statement to my wife during the ordeal was…. “I had 6 good days in a row!!! Wow, that hasn’t happened in a long time.” I know the efforts we are taking are going to allow me to have good days again.
I willfully chose to believe that. My choice allowed me to spend 36 hours of intense pain…in a good mood. The attitude made the time not so bad.
My life changed radically with this disease. I was engaging in activities I had waited all my life to be able to do. And, in a very short time, all of the life I built was wiped away. I was given a path of torment. I spent in excess of three months in extreme pain, reaching dizzying heights at points.
The disease is progressive. It is not a matter of if, but when the next set of destructive spasms occur. I can either focus on the spasms, or catching the photo of the elusive chipping sparrow that is making a liar out of me.
I wholeheartedly choose, the chipping sparrow. I pray you do the same.
Jay C. “Jazzy_J” Theriot
Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on Freenode.net –> see: irc://irc.freenode.net/ExtremeSpasticity You will need an IRC Client such as HexChat to connect.