It’s interesting, with my very curable bout of thyroid cancer, I never had to explain how cancer involved the uncontrolled replication of cells in a phenomenon called a malignant tumor. Instead, I’d answer informed questions like has it metastasized, will you need radiation? What a relief. With my Dystonia, I’m required to function as a walking professor of neurology, not to mention my own personal PR professional, services unpaid. Further, my cancer was actually cured and my doctor didn’t work in the Dark Ages. From that perspective, it was fabulous.
For much of my life, I shirked my PR duties, reluctant to announce let alone explain my disease and able to hide my walking with all sorts of dysfunctional tricks like running from class to class as a child and wearing long skirts as a young (and not so young) adult. Now I feel a compulsion to delve into the mysteries of my gait and speech, shifting control of people’s perceptions and empowering myself to address the silent questions others may be too polite to ask. I’m prepared for the blank stares “Dystonia” elicits. If I don’t speak up for my disease, who will?