My neck was not enough. It had been a couple hours since I had blogged my first post on living with cervical dystonia. I was laying in bed trying to fall asleep but my lower back was just not getting comfortable. It felt like nothing out of the ordinary though, just a sore back. That is, until my arms started spasming. At that moment I knew this was something more than a sore back. What followed was a dystonia attack that forced my neck, abs, arms, and back to spasm either simultaneously or in random combinations. What I’ve gathered over the past weekend is that my dystonia has decided my neck is just to boring and has to bring the party to now my arms, lower back, and abs (I use the term abs loosely). Oh and if I’m lucky enough my dystonia takes my speech as well.
This whole weekend I’ve had to face the question of what do I do now? I could function without control of my neck. It might be painful but I could still do all the things I wanted to do. But with this disorder now controlling my arms it makes driving a frightening prospect. Not only for my safety but more importantly the safety of those driving around me. With the disorder controlling my back and abs it makes it difficult to walk without being completely bent backwards. And losing my speech is honestly just scary. What I can be thankful for over the weekend, is that I was with my best friend and her family while I began this new cycle of dystonia. They were incredibly supportive and I could never thank them enough. The question remains though where do I go from here?
This weekend while my dystonia was attacking me it began to hurt so much that I curled up in bed against a wall and began talking to the disorder like it would actually listen. I asked it to stop so many times but it did not listen. I asked it why it had to take more than just my neck but it would not answer. I told it that I just wanted to be normal. It has not deemed to grant me that request. However after the pain receded I realized that the pain had not broken me. I am still resolved to live my life the way I want it to be lived. I will not let myself be cooped up inside all day feeling sorry for myself. Life is to precious and full of beauty to be lived that way.
I don’t know exactly where I’ll go from here. I don’t know if I’ll stay at my university this semester or if I’ll go back home so that they can figure this thing out. I don’t know if I’ll be able to work as a cashier anymore. I don’t know how often or severe these attacks will be. I do know one thing however, I will live my life. I will not be defeated. This is just a new chapter in my life with dystonia. One that might be more debilitating but also one that has hardened my resolve to make a positive impact in others lives. There are other Dystonic’s just like me who have to deal with this. There are other people who are dealing with some emotional or physical hardship. There are people who are in far worse pain than me. I want to help those people, and maybe the pain I go through now can help me connect with them even more. I still don’t know where this disorder will take me but I do know one thing. I don’t know why my neck was not enough but I do know I will make something positive out of this.