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
Throughout the last few months I have had to learn to cope with this strange disorder. I am at the point now in my life where I can say that I hate everything about the disorder. It can be at its least a great inconvenience and at its worse a whirlwind of pain that completely immobilizes me. But I can say there have been positives to having this disease. It has taught me a great many things with one being the importance of relationships with friends, significant others, and family.
I will be the first to admit that prior to this disorder I was living my life very selfishly. I was trying to do everything by myself. I didn’t see the need for other human beings in my life and I really didn’t care if I hurt anyone by taking that path. I forgot about how my decisions were going to affect others. People’s feelings be damned I was going to do what I wanted to do because I wanted to be happy. In that process of self-centeredness , I pushed away people who were the closest to me. I pushed away a wonderful and caring girlfriend, now ex-girlfriend, which I regret every day. It is rather hard to keep a relationship when the only person you care about is yourself. I also pushed away family members, namely my mother, who could see the self absorbed path I was taking and who tried to stop me from taking it. But when I’m the most important person in my mind, then why take advice from someone else?
I am happy to say that I’m not like that anymore. You see I experienced one of the most important things that a human being could ever experience. I was a recipient of an act of completely unconditional love. When my disorder first manifested itself, it hit like a seizure and sent me to the hospital at around midnight. I was scared that night to say the least as losing control of your body is not exactly a calming experience. I quickly discovered it was easy to do everything yourself when nothings wrong but it’s a lot harder when things don’t go according to plan. I was alone in a hospital at 12 in the morning with my family 5 hours away and suddenly I didn’t want to do everything myself. I wanted someone to be a part of my life. My disorder opened myself to the idea that someone else could be a part of my life. That I could make my life apart of someone elses. This is where the act of unconditional love comes into play. My best friend came to the hospital at 1 in the morning to be there for me. This best friend of mine also happened to be my ex girlfriend who I had broken up with in that past month because I didn’t see where she fit in MY life. Regardless of how much I had hurt her, she came to that hospital to be with me. She came so that I wouldn’t be alone and because she honestly cared about me. She stayed with me till I was released at 4 in the morning and then took me back to her place so that I could sleep a couple hours before my parents came to pick me up. By the time I said goodbye to her I saw the love she had for me and I realized that for the past few months I had never given it back. I only had loved myself. As a best friend and boyfriend I had been pretty crappy. I did not deserve a minute of her time that night but she gave me all of it.
Since that day I have begun to take steps away from being so self centered. To let other people into my life. And to remember that people love and care about me. I have learned to put you before I. This disorder has taught me two important rules about finding happiness on this earth. Remember that you are not the most important person on this world and appreciate the people in your life. I’ve tried following those rules and guess what? I’m happier than I was before this whole disorder began. The disorder, in itself, may not have helped me much, but it gave me the opportunity to gain a new perspective on life. I now understand the importance of loving others more than loving oneself. It’s one of the most important lesson’s I’ve ever learned and I hope now to show others that I love and care about them.
It’s Martin Luther King Jr. Day and I figured I should, like countless other bloggers, post something about it. The post will be short and it will have absolutely nothing about racism. Instead this day draws my thoughts elsewhere, it draws my thoughts to love. Namely love that has been shown to me. The selfless love people have shown me in the past months has been amazing to say the least. On this day I just have to pause and say thank you to all the amazing people who have reached out to me. Just knowing that people care about me and how I’m doing is amazing. I am truly blessed to have such wonderful people in my life.
I think we underestimate the power of just showing an interest in someone else’s life. Many people may not have physical disorders or diseases but we all have emotional hurts. On this day, I challenge myself and everyone else to make an effort to genuinely show an interest in others lives. If we would decide every day to show others that we genuinely care, this world would be a much better place. By showing we care, we come closer to Reverend Kings dream. We may not be breaking down social barriers but we are breaking down emotional barriers. And there is a very simple solution to how to break down those barriers. Love. It’s as simple as that. So how about we actually start expressing that we love one another. The first step in that expression, is to show others that you genuinely care about them. I know I have been changed by the amount of love people have shown me. I can’t live my life like I did before. Self absorbed, selfish, with the occasional act of caring. No I have to start genuinely caring about others. I am going to make this first step. Will you join me?
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.