Living with genetic dystonia is like waiting for a storm that you know is coming, but you can never predict when or how it will hit. For me, it’s not just the physical contortions—though they’re bad enough—but also the mental toll. Along with dystonia, I wrestle with bipolar disorder, manic depression, and schizophrenia. It's a lot to manage, and while I feel like I’ve got some control over it, there’s always this lingering question: When will it strike again? Will I go back to where I was? In our family, the males seem to deal more with the mental side of things, while the females experience those intense dystonic storms that twist the body painfully. But here’s the difference: I have some control, at least enough to feel like I can manage most days. My sisters don’t have that. For them, it’s not a question of if the storm will come, but when. No matter what side of the struggle you’re on, it’s always unpredictable, and it’s always painful. For me, mornings are the hardest. We
Living with dystonia is like carrying a weight that never lets up. It’s an invisible anchor, pulling at every effort I make to live as normally as possible. The struggle with my body is relentless. Muscles that refuse to obey, spasms that hit without warning — dystonia doesn’t care about my plans or my family’s needs. And sometimes, neither can I. As much as I want to be t he one who takes care of my family — to provide for them, protect them, and be there in all the ways they deserve — dystonia has a way of keeping me from doing that. It steals time, energy, and ability, leaving me to watch as others step in to handle what I can’t. No matter how much they tell me I’m not a burden, there are days when that truth feels distant and hard to hold onto. It’s not just the physical limitations. It’s the emotional toll of knowing that I can’t be the person I want to be for them. Every time I need help with something simple, like opening a jar or getting through a task, I feel l