Even leading a charmed life like I do, there is no always a silver lining. Quit laughing! We all know it’s true. It’s that whole duality of my existence that defies convention and I rather enjoy it that way.
It ain’t no secret by now that I get a little more crippled every week. However, I do seem to find new and interesting ways to get around my limitations. Or at least try to get new stories to tell about dumb things I did trying to still be as capable as ever.
All the disabled stories are depressing. And after yesterday, I can add another. I went to the neurologist. My genetic testing results are in. So it’s not DYT1 dystonia and the DYT5 results were inconclusive. My neurologist is sure it’s DYT5 Dystonia. On the plus side, we have decided against the dbs surgery. And no botox shots since my symptoms keep rotating too much and not settling in to one area for long enough. So we increased the levadopa again. Started with one pill, then two, then four, and now six a day. So it appears we will just keep throwing meds at it trying to slow the progression.
But then there is the flipside, I am an addicted runner who just doesn’t know when to shut up about it. I’m always trying to convince everyone I know that the joys of running top almost everything. And I think I do look damn good for a crippled runner.
The pictures from my last half came back. the camera guy somewhere between mile 9 and 10 got a nice shot of me still with my runners high. I was smiling and goofing off in front of the camera. Two miles later I was in a full blown bad spell and the finish line was two miles away. In that pic, I look like I was twisted up in all kinds of agonizing torture. People were asking if I was ok or needed help and one guy thought I was in a bad zombie costume for halloween. I must admit I had the running shuffle down and acted the part. Oh well, I am not going to go “almost” all the distance and give in. No matter the pain, that would be the stupidest thing ever.
Sometimes we fall short no matter how hard we try. With all the work I put in, my number one bucket list item of a full marathon is over. A piece of me has died with that dream. I was a screw up in life and had a secret dream I kept from everyone. I finally decide to go for it before I get too old. And then dystonia happened. I’ve still ran numerous 5k’s, 10k’s, a few mud runs, and two half marathons. But I never will cross knowing I did the big race just once in life. It would have changed my life forever in a good way.
I wanted to have that uncontrollable big grin when anyone ever asked if I had ran a marathon. And with a spark of deep down happinesss I couldn’t contain I would have been able to say I did the Cowtown Marathon. The rest of my life I would have looked back with a content pride, not boastful, just self happiness that I had achieved my biggest goal. The quiet satisfaction of knowing I could accomplish whatever I put my mind to.
I’m not done running, don’t even think that. I will be running as long as I can, even after my doctor has said stop. It’s hard to give up who you are!