By: JC Colyer
My name is John Colyer, people have called me JC since I was 15, I’m now 50.
My name is John, and when I was young, John was the most popular male name so we had nicknames so when you called out “John,” 5 boys wouldn’t turn around.
I live in New Jersey, and grew up here too. I am a person with a disability called Cerebellar Ataxia.
As I was saying, I am physically disabled and that causes me to struggle with depression. I take medication for depression and I feel the difference. Having a movement disorder is hard because just think of how much you move without giving it a second thought, and I have to think about every step. It wares me out.
So, I don’t put myself in situations where I feel like I might get injured. In fact, I did get injured back in 2010. Ataxia causes you to stumble and walk with a wide gait. Like this:
Look, I do realize that family and friends have noticed it and have never brought it to my attention. I would have denied it anyway, I’m Stubborn! My speech is also effected, my speech is slurred and gets worse as the day progresses. In fact, during the 1800′s Ataxia was called “Drunken Sailor” syndrome. I know people don’t understand it, and I hope to change that! I found that I feel better when I help others in their struggles, especially now that I have had to face the fact that I was not going to be what some call “Able,” to do things in a “Normal” way and I struggled in a dark place emotionally that I had never been and never want to return to.
I felt useless and broken — both physically and emotionally. While laying at a family members house after my 1st knee surgery I came across Bens Friends on the internet. It is an organization that offers online support communities for people struggling with rare diseases and disorders. I joined the site for Ataxia, and for the first time ever, I found others going through the same issues. They offer a list of over 30 different support communities for different diseases. It was liberating and made me want to let others struggling alone find these communities.
For more information about Ataxia and about my journey, please Watch the YOU TUBE video I made, explaining how I feel. I’ve been told I’m too serious, that I should lighten up and focus more on myself. It really bothers me when I’m told that, because its so real to me. I’m not trying to over saturate my passion to others but I can’t help getting excited, especially when I notice positive things coming from it. We can all find an excuse why we can’t do something, finding a way how to do it is key. If I can be an advocate, and bring awareness. That will make it all worth it!
