I inspire people. I've heard it all my life. I've heard it in playing sports, I've heard it in dancing, and I've probably heard it at other times and places as well. I've had multiple pieces done on me in newspaper and television when I was growing up talking about how I was an inspiration because I was playing sports. But I'm not trying to inspire anyone. I'm just living my life and doing what I like to do, and for some reason people seem to find that inspiring.
Ok, I get it. People see me and realize I look different. They assume I've had a difficult life, and either know or assume that I have an extensive medical history. They see how I've "overcome" all these "obstacles" and "challenges" and live a normal life "despite" them.
I put those words in quotes for a reason. You see, I don't view my life as all that difficult, and I don't view my medical history as challenges or obstacles. My life is what it is and it's all I know. I mean I do owe praise to God for a positive attitude, and to my parents for putting me in a somewhat sheltered environment (Christian school kindergarten through high school) where I experienced pretty much no bullying and was fortunate enough to always have friends. But otherwise, my life is what it is. I had a different level of consciousness and awareness as a child than I do now as an adult. If I were going through all this medical stuff now, I think I would view it differently than I did experiencing it as a child. I would probably consider living a normal life after that to be more inspirational than doing it the way I have.
Allow me to take a moment to give those of you who don't know (which is most of you) a brief explanation of my medical history. I was born with a thing called Treacher Collins Syndrome. This is a syndrome (or condition, to use a more common word) that results in underdevelopment in the facial area. For example, two noticeable areas of underdevelopment on me are my ears, which are significantly underdeveloped and lack an outer ear canal, and for which I wear bone-conductive hearing aids, and my cheeks, which lack bones, and for which I have an implant on my right side (we tried the left too, but it didn't work out very well). The white thing around my neck is called a tracheostomy tube, or trach for short (pronounced "trake"). It's a device through which I breathe. I have a hole in my neck, and the tube of the trach goes in the hole and down my throat a bit. It's purpose is simply an additional airway, because for all intents and purposes I can't breathe through my nose, and as a child I was not getting enough air through breathing through my mouth alone. Nowadays I'm able to get sufficient air through my mouth alone, and generally keep a cap on the trach and do not use it except at night when I use it to get extra air for higher quality sleep.
I've had dozens of surgeries growing up to try to improve both appearance and functionality in my facial area. I haven't had any since I was 17 or 18, and don't plan on having any more in the future (primarily because the insurance ended when I turned either 18 or 21). My condition is purely physical, with no mental effects at all. This is very important to me for people to understand, because I hate it when people assume there's any kind of mental impairment, though I can't blame them, especially with my speech not being clear. Another thing I hate, or dislike, is for people to use the term disability or deformity in reference to me and my condition. I have no disability as far as I'm concerned, and the word deformity is a disgusting word that really rubs me the wrong way, at least in reference to myself.
All I'm trying to do is live a normal life, and all I want is to be viewed and treated normally. Please DO NOT give me special treatment or befriend me or act toward me out of pity, charity, or sympathy. I am only interested in people who are genuinely interested in me regardless of my physical appearance. If I suspect you're acting out of the aforementioned motives, I may actually resent you, or at least lose a little respect or favor for you, because I pretty much resent and detest the idea of people acting out of those motives toward me. Their motives may be good, and I can't really blame them and am kind of a hypocrite because I do the same thing, but nevertheless, I hate it being done to me, so please don't.
So if people want to view me as an inspiration, that's ok I guess. I can't control what people think, but remember, I'm not really trying to be an inspiration. Maybe I should embrace that a little more, but as of right now, I'm just trying to live my life like anyone else, just doing what I want to do, and only be an inspiration in the same ways anyone else could be, such as pursuing things that I love to do, and not because of my physical appearance and medical story.
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