Friday, May 21, 2010

I MISS ME.......

This is about as close as you will ever see me get to wallowing in self pity. Sure, we all have days where we feel a little sorry for ourselves. Some people have self pity down to an art form though and for those poor souls I feel sorry.


If you follow this blog you know that I am trying to live my life without letting PD run the show so to speak. This post has to start closer to the beginning though, before I took control of my life back from the disease.


About the time I was diagnosed we found out we were having our daughter, Rielly-Anne who arrived five months later. During the time between my diagnosis and her birth I spent a great deal of time wondering if I would even live to see her turn five years old, if I would ever be able to take a walk with her or see her grow up. There was so much I didn't know at the time even though I had been exposed to PD by my oldest brother who had been diagnosed with PD+MSA several years before. Out of ignorance about how PD would really affect me in my day to day life I was left to wonder.....and we always tend to think the worst.


Almost four years later, I now know how PD will affect me day to day and I also know it is an exercise in futility to sit around and try to figure out the future. I have learned that I don't have to lay down and roll over and allow myself to be paralyzed by fear of the unknown or even the known. We have made decisions that are surely seen as controversial. We had a second daughter. I am building another race car. Almost as if there was no PD......


But there is PD and there are times when you just can't stop a feeling or an emotion from taking control.


My step son, Joe has taught himself to play guitar over the last year or so. When he first showed an interest I showed him a few chords and figured he would lose interest in a month or two. When his interest held and he started showing an exceptional ability to play I gave him my old accoustic to guitar to go with his electric. The other day as I walked by his room I heard him playing and just stood quietly listening as he skillfully played first one song and then another and I don't mean chords .....this was lead guitar stuff that I never could have played on my best day pre PD.


As I listened I found myself in self pity, wishing I could still play a little guitar now and then. And from there my mind wandered to other things I wished I could do like sit quietly for more than a few minutes without my legs cramping and jumping and forcing me to get up and move around...
get thru a day without being completely worn out and wanting a nap....play with my daughters the way my oldest, Bryan is able to play instead of being limited by old joints, fatigue, etc.

Tonight, almost a month after starting this post, I was looking thru pictures of me on my facebook page and I ran across a picture of me holding Rielly-Anne right after she was born about three and a half years ago. I didn't take a long look for me to realize that a lot has changed in the four years since I was diagnosed. A lot. And yet, to me, it seems as if I am no worse , at least that is what I tell people when they ask me about it. I tell myself that too. But pictures don't lie. They leave little room for "putting up a front" or " having a positive outlook". There is no denying that PD is slowly, inevitably changing me and in my own stubborn way I am in denial and refuse to give in. I am sticking with the plan to live my life the way I want for as long as I can. I no longer wonder if I will see Rielly-Anne reach 5 years old. I probably will. Instead I focus on making all the time I get with my wife and kids into memories or in some cases life lessons, that will be remembered. Like Sunday mornings- Rielly-Anne and I now have a tradition of going to pick out a dozen fresh donuts, in "your Shaaky truck Daddy", she loves to go anywhere with me in my Shaaky truck.

Lately, Mary has been telling me I am having a mid life crisis. Race cars, hot rods, now I want a little 10 foot tunnel hull race boat. We agreed not to call it a crisis though, mid life issues...
My label is more like a bucket list. There is a sense of urgency now that wasn't always there...

And in the midst of all this, sometimes, like when I was listening to Joe play my old acoustic guitar, I miss the me I used to be. For a few minutes, I plummet into a little spat of self pity. Never for long though because it would take up too much precious time , wasted in thoughts of what might be instead of what is and what can be. I think it is like a quick glance in the rearview mirror, you can't drive the car if you stay focused on the rearview mirror, you have to be looking over the hood, anticipating, reacting, adjusting, correcting. Funny how it comes back to driving something isn't it ? :-)

So, I will drive on and I will enjoy the drive. And when I can no longer drive, I will ride. And whenever the last ride comes, there will be no regrets. Sure, I miss the me I used to be sometimes. But I love the life Mary and I have with our kids and nothing will keep me from living it as fully as I can while I can. Stubborn ? Yep. Determined ? Yep. Single minded ? Yep. Driven ? Yep.
Happy ? Yep. Tremendously.