Living with Dystonia

Hi. I’m Kayla. And I have generalized dystonia.
“What’s that?” you ask.
My answer for anyone who asks is always the same: it’s a neurological movement condition. A scientific definition would note that it is characterized by involuntary muscle contractions and comes in many forms. As many as 250,000 people in the U.S. have dystonia, making it the third most common movement disorder behind essential tremor and Parkinson’s disease. It’s often misdiagnosed because of the complexity of the condition.
But those are just facts. And it’s a whole lot more than that.
Dystonia is random bouts of muscle pain. It’s being unable to control your own movements. It’s knowing what and how to do something but not being physically able to that something. It’s being asked “Are you drunk?” when you’re balance is simply non existent. It’s being asked “Are you cold?” when you have tremors. It’s being asked “Why do you talk like that?” or “Are you deaf?” when the condition affects your jaw and tongue muscles.
Dystonia is being unable to comfortably meet new people, talk on the phone, go through the drive-thru, and talk to pretty much anyone for fear of not being able to be understood. It’s struggling to cut my own food, button up my shirt, zip my coat, stand still, take a shower, walk up and down the stairs, type out messages on my phone. It’s falling down the stairs, on the sidewalk, at work because your ankle randomly buckles or you lose your balance without warning.
Dystonia is living with a condition that will never go away and presuming it will only get worse with age.
Despite all of this, dystonia is something I’ve tried not to define my life with. I’ve pushed through and always gone about life with a strong perseverance. I’ve tried to live as if I didn’t have this condition. But more recently, I realized this condition is a part of me, and I need to own it and not let it conquer me. Throughout the past year, I focused on self-improvement. I went to physical therapy, talk therapy, began working out to the best of my ability, and started seeing a chiropractor. I still have my ups and downs, good days and bad. But each of these activities have helped me improve myself in some way.

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