When Your Own Body Becomes a Stranger Dystonia Awareness Month — The Storms We Hide, the Families Who Stand in the Rain There is a kind of fear that comes with dystonia that is difficult to explain. Sometimes it isn't the fear of having the disease. It is the fear of admitting that you might. Because once you say the word dystonia , the possibility becomes real. And sometimes people would rather live in the uncertainty of “Maybe it's nothing” than face the terrifying question of “What if it is?” I understand that fear. I have lived through dystonic storms. And I have watched my sister fight them— every single day. So when I talk about dystonia, I am not talking about something I learned from a pamphlet. I am talking about something that has lived inside my family. The Storm Nobody Wants to Name Sometimes it begins with something small. A muscle pulling when it shouldn't. A movement that doesn't feel voluntary. A strange posture. A cramp that keeps r...
Surely I Can't Be the Only One When Mental Illness Becomes More Than a Family Can Carry There is something I have been carrying around in my mind for a long time. And lately, I keep coming back to the same question: Surely I can't be the only one. Surely my family isn't the only family that has reached that terrifying place where you love someone deeply, would do almost anything for them, and yet finally have to admit: We cannot provide the level of care this person needs. That sentence is incredibly difficult to say. Because it can sound like giving up. It can sound like abandonment. It can sound like saying, “You're too much for us.” But that isn't what we're saying. What we're really saying is: “We love you. That's why we're asking for help.” I'm Not Writing This From the Outside Looking In I'm not writing this as someone looking at mental illness from the outside. I know what it is like when your own mind doesn't alwa...