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Understanding Dystonia from within. Expertise from Lived Experience.

Understanding Dystonia from within. Expertise from Lived Experience.
Photo by Juvian Duff / Unsplash

I honestly feel like I understand my Dystonia far more deeply than any neurologist who I might see for 30 minutes every 3 months.

Seeing my neurologist actually scares me a bit because it is the most powerless I feel in the whole 3 month cycle.

In that brief consultation my neurologist has the power to alter my trajectory for better or worse.

A journey that I then manage and live with every waking hour of every day for the next 3 months.

I manage and cope in a million different ways with the endless stream of physical, emotional and social challenges and assaults.

And for the most part the things that make my day better or worse are on me.

But the Dr distills their whole understanding of my journey - all the before and all the after- down to that all-powerful Botox filled syringe.

It IS powerful, but it is not everything. I and my Dystonia are more than my misbehaving muscles. And my life - good or bad - is about more than my muscle spasms.

My understanding of this disorder runs so deep within me that I feel I could say “I see your medical degree and I’ll raise you my 8760 hrs of lived experience just from the last year alone.”

Yes Dr, you can call me an expert. That would be an appropriate level of respect to hold in mind while you’re speaking with me.