Who am I? I could start this off by saying I am just a normal guy from a normal town. However, most of the people who know me would have to disagree with this assessment. If I could guess, they would say that I am a unique individual in an interesting life situation. I have had amazing life experiences people could only dream of having, and yet I enjoy the everyday things about my life the most.
Why should you care about my life or my situation? Frankly, it does not matter to me what anyone thinks of who I am, and what I do with my life. However, I feel it is important for you, the reader, to understand who I am in order to understand others in similar life situations.
You see, I was born with a degenerative muscle disease known as Spinal Muscular Atrophy (SMA) type III. To most, I simply say I have a form of Muscular Dystrophy, but MD is not the technical diagnosis for my disability. Muscular Dystrophy is an umbrella term for 40+ neuromuscular diseases, one of which is SMA.
To further confuse things, there are specific diseases within the group classified as the Muscular Dystrophies. One is the incredibly common yet often lethal Duchenne Muscular Dystrophy, which is usually present in males and not females. SMA is not one of the Muscular Dystrophies, but it is a form of Muscular Dystrophy. Explaining anything further will get into the discussion of muscles, nerve endings, and anterior horn cells. Often it is much easier to just say I have Muscular Dystrophy and leave it at that.
I was diagnosed with SMA type III at age four. My grandmother noticed I was walking like a mechanical or wind-up doll at age two. Thus began two long years of tests. I was enrolled in swimming for physical therapy and after my diagnosis I was placed in dance classes in the hopes that anything physical would keep my weak muscles from getting any weaker.
I was able to do everything early. I walked early, talked early, crawled early, and sat up early. There were no initial signs that anything was wrong with me. Had the doctors not discovered I had been born without a left hip socket when I was 2 ½ they probably would not have been led to the diagnosis for SMA when I was as young as I was.
Getting the diagnosis was like getting a death sentence for my family. I sort of knew what was going on and it was an incredibly emotional experience. Yet, I was okay. I could walk with a slight limp. I could skip. I could play on the playground at school. I was just a little bit slower, and it took me longer to do things like get up from the floor after circle time.
Article comments
1 - Pekky Marquez
I am about to do an Internship in a Protection and Advocacy agency, and I want to thank you for this, for I find it trully inspiring and a guideline for me as well as for explaining others about the self-determination and "normal" (what is normal and who determines it anyway?) life of people with disabilities.
I have been interested a lot on what people have to say about self-determination, which is why I thank you for your article. Trully human. :)
Peace!
Pekky
2 - Snarkattack
Bloody inspiring, your article - thank you for sharing. I would do well to remember your situation next time I start complaining about my own (less severe) affliction. It sounds like you have achieved loads more than some of your healthier peers.
I'm with you on the education of others - that is one of the reasons that I'm open about my sickness. It's a bit different in that it's psychological but on occasion people do ask me some stupid things, or I might have to explain why going out in public isn't an option at certain times. Thank goodness for understanding friends and family.
3 - diana hartman
I am pleased to tell you this article is being featured in the Culture Focus today, August 15.
Diana Hartman
Culture Editor
4 - Dominick Evans
Thank you all for your kind words and for featuring this article. I feel it is incredibly important to helping to combat discrimination and facilitating understanding and discussion.
I am working on the second installment of this series so expect it to be available soon!