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.
Monday, September 29, 2014
Tuesday, September 23, 2014
My Last 30 Years
Sooo, I've been alive for three decades. That's a long time! As they say, it definitely goes by fast. I can't say it feels like yesterday that I was in high school or college, but it doesn't feel like my 29th birthday was that long ago, either.
I've experienced a lot over my first 30 years of life. In some ways I've experienced more than most, in some ways less, and in some ways about average. My first 10 years of life were pretty eventful, with lots of medical history, between surgeries and doctor appointments, which extended into my teens. This certainly made for a unique and sometimes challenging childhood, but thankfully it was a very happy one, as I was blessed with a positive outlook, and surrounded by a loving and positive environment of lots of caring family and friends. I made my first friends in kindergarten, and we're still friends today.
My middle ten years were fairly happy as well. They saw me go from middle school into high school and then to college. Things got a bit more challenging socially during these years. I still had plenty of friends, at least through high school, but I started to become more self conscious about my appearance, and also had a desire to be part of the popular crowd, which I sometimes felt difficult to fit in with, as I am not a pure extrovert, and tend to be kind of quiet in group settings. My self consciousness hit a high point in college. This was because, though I was at a Christian school (which was also the case previously, kindergarten through high school), I was now at a place where I knew almost nobody, and had to make new friends. This was an exciting challenge which I was very much looking forward to going into college, but it took a little longer than I hoped. I made many acquaintances during my freshman and sophomore years, and got along with my various roommates fine, but it wasn't until my junior year that I found friends (and roommates) who I really connected with and became close friends with. I am thankful that I found them; they are some really good people, and we are still friends today.
In addition to the usual routine of school and friends, my childhood also included an active sports lifestyle. This started with baseball at age six, which lasted a couple years, until I quit. Then at age nine, I took up hockey. I played hockey (roller and ice) consistently until about age 17, when I sort of phased out physically. While still playing hockey, I also took up golf, starting at age 12 or 13, and played consistently through high school, where I played for my school all four years. My last 10 years have not been as eventful athletically, as I played some intramural sports in college, and a couple hockey and golf leagues outside of school, but that's about it. The latter half of my last 10 years have introduced me to a new "sport", though, in the form of dancing.
I found dancing (country dancing, to be specific) about five years ago. I had already been into country music for a few years, and eventually I decided to check out country bars. It started out slow, and I didn't learn any dances until a while after I started, but eventually I got hooked on it, and started learning, and haven't looked back since. I added more country bars and more dances and more friends, and it eventually comprised my entire social life. I'm not quite as active or passionate now as at times in the past, but I still do it and enjoy it, and am open to continuing to learn new moves and dances, including different styles of dance other than country.
Speaking of country music, an interesting sidebar is that my life has included a variety of musical tastes thus far. It's seen everything (in rough chronological order) from pop (Mariah Carey, Britney Spears, Michael Jackson, Backstreet Boys, N*Sync), to "punk rock" (Blink 182, Good Charlotte, Sum 41, Yellow Card), to Switchfoot, to my current interest in country music. Also interesting is that I've observed that with both music and sports/hobbies/interests, I tend to be really passionate and involved in one for a certain amount of time, and then I stop and move onto something else. Usually this time period is a few years. I suppose this is both a good and bad thing, since it means that I will be a very avid fan or participant in whatever I'm currently interested in and will go at it full-force and try to master it, but that my interest may wane over time, and I might eventually stop and move onto something else. Currently I'm at 4+ years of dancing, and 7+ years of country music, and I don't plan on quitting either anytime soon!
In addition to music and dancing. my most recent decade has seen some other transitions. I graduated from college, lived in two other states, and progressed in what is now my current job. My out-of-state residencies were both short-lived, one for a predetermined 10 weeks in Colorado as part of a summer program, and the other for what ended up being five and a half months in Idaho. With the latter, I could have stayed longer, but I lost my job a couple months in, and made the difficult decision to move home instead of stay and find another job. What made the decision so difficult wasn't so much the job situation, but other factors, such as it being a beautiful place with a winter climate that I love. That climate is why I moved there in the first place. I'd love to go back there again to visit, and maybe someday to live. But for now, I live here in Southern California, where I enjoy working in my current job involved in a couple of my family's businesses.
As is common after college, my life has settled down into a fairly regular routine. It consists of work and fun with friends, which for me is dancing. In some ways it appears I'm a bit behind when it comes to milestones or progress, as almost all of my longtime close friends are married with kids and financially independent, and I am not. This could be viewed as a shortcoming on my part, but I'm working my way toward financial independence, and have goals and plans. As for the marriage and kids, I certainly desire to get there someday too, but that part is a little more out of my hands. I've pursued a few girls over the last few years, arguably for the first time in my life, and while I haven't had any amount to a romantic relationship yet, I'm hopeful that I will find one someday. It is a bit saddening to me at times that my friends are so far ahead of me in the stages of life, and I allow it to create a bit of a distance between us and reason not to spend a lot of time with them, as they are doing their own thing, and have different interests/schedules/commitments than me. But it is what it is, and they are still very cherished and valuable friends. Because not only are they still great people, and caring for me as ever, but now they also have valuable experience and wisdom in terms of life and love.
Overall, I can't really complain about where my life is at, 30 years in. I have more than I need, and lots of great, caring, loving people around me. Do I wish certain things were a little different? Yes. And am I completely happy? No. Can I be a better person and do I have areas I need to improve? Yes. But life is what you make of it, and it's a journey for all of us (that sounds really cliché). So as I begin year number 31, I guess I just need to continue to set goals and plans and try to accomplish them, and try to take things one step at a time, and not worry about what I can't control. Before I know it, I'll probably be celebrating another 30 years! Let's hope they're good, and that I experience self-improvement and progress, and make decisions that promote happiness.
My middle ten years were fairly happy as well. They saw me go from middle school into high school and then to college. Things got a bit more challenging socially during these years. I still had plenty of friends, at least through high school, but I started to become more self conscious about my appearance, and also had a desire to be part of the popular crowd, which I sometimes felt difficult to fit in with, as I am not a pure extrovert, and tend to be kind of quiet in group settings. My self consciousness hit a high point in college. This was because, though I was at a Christian school (which was also the case previously, kindergarten through high school), I was now at a place where I knew almost nobody, and had to make new friends. This was an exciting challenge which I was very much looking forward to going into college, but it took a little longer than I hoped. I made many acquaintances during my freshman and sophomore years, and got along with my various roommates fine, but it wasn't until my junior year that I found friends (and roommates) who I really connected with and became close friends with. I am thankful that I found them; they are some really good people, and we are still friends today.
In addition to the usual routine of school and friends, my childhood also included an active sports lifestyle. This started with baseball at age six, which lasted a couple years, until I quit. Then at age nine, I took up hockey. I played hockey (roller and ice) consistently until about age 17, when I sort of phased out physically. While still playing hockey, I also took up golf, starting at age 12 or 13, and played consistently through high school, where I played for my school all four years. My last 10 years have not been as eventful athletically, as I played some intramural sports in college, and a couple hockey and golf leagues outside of school, but that's about it. The latter half of my last 10 years have introduced me to a new "sport", though, in the form of dancing.
I found dancing (country dancing, to be specific) about five years ago. I had already been into country music for a few years, and eventually I decided to check out country bars. It started out slow, and I didn't learn any dances until a while after I started, but eventually I got hooked on it, and started learning, and haven't looked back since. I added more country bars and more dances and more friends, and it eventually comprised my entire social life. I'm not quite as active or passionate now as at times in the past, but I still do it and enjoy it, and am open to continuing to learn new moves and dances, including different styles of dance other than country.
Speaking of country music, an interesting sidebar is that my life has included a variety of musical tastes thus far. It's seen everything (in rough chronological order) from pop (Mariah Carey, Britney Spears, Michael Jackson, Backstreet Boys, N*Sync), to "punk rock" (Blink 182, Good Charlotte, Sum 41, Yellow Card), to Switchfoot, to my current interest in country music. Also interesting is that I've observed that with both music and sports/hobbies/interests, I tend to be really passionate and involved in one for a certain amount of time, and then I stop and move onto something else. Usually this time period is a few years. I suppose this is both a good and bad thing, since it means that I will be a very avid fan or participant in whatever I'm currently interested in and will go at it full-force and try to master it, but that my interest may wane over time, and I might eventually stop and move onto something else. Currently I'm at 4+ years of dancing, and 7+ years of country music, and I don't plan on quitting either anytime soon!
In addition to music and dancing. my most recent decade has seen some other transitions. I graduated from college, lived in two other states, and progressed in what is now my current job. My out-of-state residencies were both short-lived, one for a predetermined 10 weeks in Colorado as part of a summer program, and the other for what ended up being five and a half months in Idaho. With the latter, I could have stayed longer, but I lost my job a couple months in, and made the difficult decision to move home instead of stay and find another job. What made the decision so difficult wasn't so much the job situation, but other factors, such as it being a beautiful place with a winter climate that I love. That climate is why I moved there in the first place. I'd love to go back there again to visit, and maybe someday to live. But for now, I live here in Southern California, where I enjoy working in my current job involved in a couple of my family's businesses.
As is common after college, my life has settled down into a fairly regular routine. It consists of work and fun with friends, which for me is dancing. In some ways it appears I'm a bit behind when it comes to milestones or progress, as almost all of my longtime close friends are married with kids and financially independent, and I am not. This could be viewed as a shortcoming on my part, but I'm working my way toward financial independence, and have goals and plans. As for the marriage and kids, I certainly desire to get there someday too, but that part is a little more out of my hands. I've pursued a few girls over the last few years, arguably for the first time in my life, and while I haven't had any amount to a romantic relationship yet, I'm hopeful that I will find one someday. It is a bit saddening to me at times that my friends are so far ahead of me in the stages of life, and I allow it to create a bit of a distance between us and reason not to spend a lot of time with them, as they are doing their own thing, and have different interests/schedules/commitments than me. But it is what it is, and they are still very cherished and valuable friends. Because not only are they still great people, and caring for me as ever, but now they also have valuable experience and wisdom in terms of life and love.
Overall, I can't really complain about where my life is at, 30 years in. I have more than I need, and lots of great, caring, loving people around me. Do I wish certain things were a little different? Yes. And am I completely happy? No. Can I be a better person and do I have areas I need to improve? Yes. But life is what you make of it, and it's a journey for all of us (that sounds really cliché). So as I begin year number 31, I guess I just need to continue to set goals and plans and try to accomplish them, and try to take things one step at a time, and not worry about what I can't control. Before I know it, I'll probably be celebrating another 30 years! Let's hope they're good, and that I experience self-improvement and progress, and make decisions that promote happiness.
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