July 10, 2013

The joys of dystonia and the challenges of Dystonia…

Last Friday July 5th, a miracle happened, one that I have been dreaming of my entire life..Image

I ran the fastest 6 miler, I have ever run in my entire life…by myself more importantly.  I felt strong, I have been working really hard for this day and dreaming about it the day I emerged from brain surgery.  I was running as fast as an able bodied person, and so proud of myself.  I was smiling all weekend and thankful all weekend..

Then Sunday evening happened…one of those events that just are never planned when living with a disease…An tremor episode happened…and while I started shaking I started hearing the lyrics from Daniel Powter’s song – Bad Day, especially this part of the song ..

Sometimes the system goes on the blink
And the whole thing turns out wrong
You might not make it back and you know
That you could be well oh that strong
And I’m not wrong

Cause you had a bad day
You’re taking one down
You sing a sad song just to turn it around
You say you don’t know

And those tremor episodes start a bad day, a day you know will pass, but the emotional path to getting over the bad day is a long one…one of being scared, feeling like you are the only person on the planet, and then in a moment of clarity you remember you have friends…friends that can help you breathe through the moments, friends that can bring you lunch because you are too exhausted from all the brain activity and medicine to go to work….Then what I like to call the Siu-Pity party starts (but I try not to keep the party to only one day) – the why me? why now? what happened I was such a bad ass 3 days ago…and then the anger and then finally the acceptance…the acceptance that it was just a bad day, the acceptance that I have Dystonia, the acceptance I could have more bad days and the realization I don’t always have to go through it alone…

So I share my story because for all that follow this blog, I am real too…I have bad days, I have great days…and the bad days are always a gentle nudge to slow down a little and realize I am differently abled…But the disease as always won’t rule me but will have to be my physical compass – to remind myself that I still work out more, run more than most able bodied people I know and I shouldn’t stop because I had a bad day…plus the Siu Pity party is kind of boring and who wants to go to a boring party?

So for all of you that I ask if I have bad days, I do I just acknowledge them, allow my body to rest for 2 days and get back to my training, because as we all know its not about pace, it is about lacing up, going out and finishing and celebrating the medal with friends – now that’s a party 🙂

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