Hello everyone who reads this blog! I will be transitioning this blog to another web address and changing its name due to the fact that I may not just have dystonia. After speaking with my neurologist he is adamant that I do not just have dystonia. I certainly have many qualities of a dystonic but certain movements I make are not in line with Dystonia. I was originally told that I had cervical dystonia at the first hospital I went to but my neurologist has not made that diagnosis. As I continue to have more tests and learn more about this disorder I will be changing the name of my blog so that I do not feel like I am misleading anyone. I will continue to try to raise awareness about Dystonia on my new blog. For now I will only refer to my condition as “my movement disorder”. My new blog can be found at this address:
I hope that you all continue to read my blog and I love hearing about what you all think! I’ll see you guys at my new blog and I’ll make sure to keep you updated on my condition!
– Chris Shaw
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.
When I was first diagnosed with Cervical Dystonia, I was very confused to say the least. I wanted to know what was happening to me, how it was happening, and why it had started. I wondered how it would affect my life and my future. Would the twitching and the pain get worse? What judgements would people make about me while my neck was going wild? Would it last for the rest of my life? The questions at first were overwhelming and it left me feeling very depressed. Being diagnosed right before a holiday did not help either. Thanksgiving Day was probably one of my biggest low points because of an attack I had before Thanksgiving Dinner. I wanted to be social, to spend time with friends and family, to be a part of a conversation that did not revolve around what was wrong with me. However my neck had different plans for me that day. it decided to start spasming to the left like it loves to do. During the attack I sat in a corner and stared at my phone while trying to ignore the stares or sympathies of those around me. I just wanted to be normal again. That was all.
That attack and other attacks like it initially made me feel very depressed and helpless. I considered quitting my job as a cashier and dropping out of college for a semester to figure things out. But I didn’t. And you know what? I’m glad I didn’t. I’ve had Cervical Dystonia for about three months and my attacks are worse than they were in November but I have refused to let it control my life. I have learned that when faced with a disease or challenge that is out of your control, you may not be able to control that its happening but you can always control how you react to it. Are there still times when I get depressed about my disease? Yes. I would be a liar if I said there wasn’t. Are those times of depression as frequent as when I was first diagnosed? No. Not even close.
I will not let this disease break me down for two reasons. The first being that I want to be happy. It’s as simple as that. The second reason and inarguably the most important, is this disease has given me the opportunity to help others. I hope to connect with others with disorders like mine and hopefully build some type of support system. I hope to raise awareness about this disease and one day hopefully find a cure. I want to be an inspiration for those who are where I was that Thanksgiving. Those who feel depressed, helpless, or alone. This disorder gives me the opportunity to help them. I can’t control when my neck will lock, spasm, or twitch but I can control what I do with my life from here on out. I am choosing to be happy. I am choosing to help others. And I am hoping that others will make that choice with me.