Holidays with Dystonia

What does it mean to you to be living with a rare disease or chronic illness at  this time of year? 

Over the years, since I was diagnosed I’ve never really thought about it. But I’d have to say that I’ve come to appreciate my life with dystonia. One thing that I appreciate is that my dystonia has brought more people into my life. They are ones that I can call my friends now, and hopefully they say the same about me! It has connected me with people from all over the world through social media. So, even though I became a single dad back in 2015, I don’t really feel lonely, because I now have more people in my life that empathize with me.

As strange as this might sound, it has enabled me to take more chances. I’m pretty certain that I would have not signed up for an ultramarathon had it not been for my chronic illness. I ran a marathon as a result of my running to deal the stress of having many unexplained symptoms. Having a chronic illness has also empowered me to not take things for granted anymore. Time with my family, time with my daughters, the ability to walk/run… it has taught me to make sure that whatever I do, I do deliberately. It has also made me grateful, humble and open to what else I’ve got coming down the road. I may not know what is around the corner, but I’m using my positivity to set the stage!

If you could receive any gift what would it be? 

That’s easy. A new treadmill!!

“New Year, New Me”

With a new year, comes more opportunities. I’ve never been one to make resolutions and I don’t think I’m going to start. My ultramarathon is scheduled in April, so I’m going to continue my journey with running and see where it takes me.  I want to see how far I can push myself with a chronic illness. Masochist? No. I just need to find my limits.

I’m going to continue spreading happiness and hopefully inspire others, with or without dystonia, to always reach for their dreams.

It may be a “new year”… but I’m hoping to remain the same happy and positive person that I’ve become, thanks to my Dystonia. I plan on remaining open to the opportunities that will randomly pop up. And to remember that all it takes is that first initial step. After all, that first step is the hardest one to take. After that, it’s the stars!


pw_nolan_lowkeyportrait_feb16_056About the Author: Nolan is a father of two, a marathon runner, and a Dystonia survivor. Follow him on twitter @nolbeerunner , read more about him here, and check out the story of his first marathon and his video series on Patient Worthy!




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