How Dystonia Moves Me


Dystonia moves me.

It moves me in ways that most days, I don’t want to get out of bed because I’m in so much pain. It moves me in ways that the most basic tasks become awkward. It moves me in ways that I have to wait to take my muscle relaxer, especially because I might also have myasthenia gravis, and there are side effects. And in those difficult moments at the start of the day, when I’m trying to find the right angle or leverage to get dressed and look like a person, I look for ways for dystonia to move me in different ways; to make me a better person.

And as I start my day, as I struggle to move, I begin to wonder… in those quiet moments of struggle, who else is struggling? How can we connect these people? How do we make these awkward silent, uphill battles neither awkward nor solitary anymore?

We can connect people through networking. And with networking comes new friends, support groups, forums, advocacy and research. And as we face our own personal struggles, we can face them together.

And as we face our struggles together and overcome battles, we can work towards sharing love everywhere we go, with everyone we meet, and drive out hate. Because with dystonia, there is so much stigma about the disease. We need to instead spread awareness through kindness and open minds.

How does it move me? Instead of noticing the pain, the awkward movements, the stigma, it moves me to overcome my anxiety, confront the stigma and what makes every day difficult. It moves me to be a better person as I move through my day and my life and add to the lives of those I encounter, even though the condition I live with is difficult.

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