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.