Navigating the Unpredictability of Genetic Dystonia and Mental Illness

 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 can almost guarantee that something will go wrong—whether it's uncontrollable muscle movements or brain fog. On those tough days, it means waking up hours earlier just to be able to function. Sometimes, it feels unbearable. The weight of it all can make us feel isolated, like no one else could ever truly understand what this life is like.

But even in that isolation, there’s comfort in knowing we’re not alone in this battle. My family understands because they’re right there with me, fighting their own battles. We don’t like to complain, but it’s a blessing to have someone who really gets it.

Through it all, I have to remind myself of the hope I have in Christ. This is the life He’s chosen for us, and I trust that He wouldn’t bring us to these challenges without walking alongside us. When I’m in the midst of a mental breakdown or a storm of dystonia, it’s often music that gets me through. One song that’s been a lifeline for me is "Songs in the Night" by Lauren Talley. I can’t tell you how many nights I’ve found strength in that song. And verses I memorized as a child come back to me when I need them the most.

This disease can feel impossible to navigate, but I know I can’t do it alone. God understands what we go through, even when no one else can. So I ask for your prayers as we keep trusting Him, one day at a time.