Treacher Collins Retreat 2017

So this past weekend, I ventured out with my mom to my first ever retreat for Treacher Collins Syndrome (TCS), the medical condition with which I was born. It was not only my first TCS retreat, but my first TCS event of any kind. Previous to this, I had met other individuals with TCS, and--more recently--have gotten involved with some TCS Facebook groups, but had never been at a place with several other people, let alone a gathering meant to celebrate and educate about the condition. 

It was a unique and cool experience. I really wasn't sure how it would go, or what to expect. I didn't know how I would react, or what I might have to offer or gain from the experience. As it turned out, I had a pretty good time, met lots of cool people, made some new friends, learned some new information, met a great medical team, and hopefully made a positive impact on some of the other people at the retreat. 

It was interesting to observe the age range of all the people with TCS at the retreat. There were babies, young children, older children, young adults, middle aged adults; a pretty wide spectrum. I think from a pure observation standpoint, I most enjoyed watching the young children. They played and acted just like any other children, oblivious to their condition, which helps to emphasize and remind that people with TCS are really just like other people, despite their appearance. They like to play and have fun and go out just like anyone else. This was further reflected on Friday night, when I went out with a small group of people about my age, two of whom have TCS, and two of whom do not. In fact, it was actually two couples, which provides hope and inspiration and a reminder to me that I can find someone, as both couples were "mixed", i.e., a TCS person and a non-TCS person. In this case, both TCS individuals were girls, which means they found guys who were undeterred by--or perhaps even attracted to--their significant other's appearance. Seeing how guys tend to be more visually oriented than girls when it comes to attraction, that gives reason for hope for me that I can find a non-TCS girl who will love me.

While I certainly met and interacted with other people with TCS, I got the most enjoyment from interacting with the families of the TCS people. This mirrors my pattern of behavior here at home. Because while I'm able and willing to interact with others who have TCS, I'm not perfectly comfortable doing so. I find that when I'm around others with TCS, I get a little self-conscious. This happens when I'm around non-TCS people too, but when I'm around them, I feel myself comparing myself to them, determining who looks more normal and such. Obviously I keep all of this to myself and don't let it show, but that's what goes on in my head. I've always tried to view myself as normal and live my life as such, and so I think as a partial consequence of that, I feel most at ease around people without TCS, because that's what I'm used to, as well as where I feel best about myself, because I take pleasure from being surrounded and liked by attractive people (which probably says something about how I view myself, and compensation methods that I'm employing, but that's a separate topic for another post). Speaking of attractive people, there were a few of them at the retreat. Some were siblings of TCS people, some were medical staff, some were traveling nurses with the TCS kids. I definitely had my eye on a few different women there, but I've come to find out that all of them are in relationships. Bummer. Anyway, right or wrong, that's how I enjoyed my time socializing with others at the retreat (a little alcohol at the nighttime events didn't hurt, either). I should probably work on embracing my own TCS and being more comfortable around others who have it, but that's something to work on going forward; and given that this was my first wide exposure to others with TCS, I think it's understandable that I might have trouble jumping right into it.

In terms of medical information/education, I received a lot, as there were several presentations on Friday and Saturday; but most of the info kinda went over my head. Furthermore, most of it was regarding procedures that either I have already had done as a child, or that are not necessarily feasible as an adult. However, I did get to try out a couple different kinds of hearing aids, and talk to several individuals who have them, along with their families. This was very valuable, because my type of hearing aid is very outdated, so much so that the company has stopped making them. This means I will soon be forced into newer technology, and that's what I got to test out and discuss this weekend. 

Aside from all that, I also participated in a clinic day at the hospital (Cincinnati Children's Hospital, where the majority of the retreat events took place) on Monday, where I got to be seen by a whole team of doctors of varying specialties, all in one place and all completely free of charge. Most of these doctors had participated and given presentations over the weekend at the retreat, but even the ones who hadn't were so nice and friendly. It was a really cool experience to get to be seen by a whole team, all in one place, where I literally sat in a single exam room and they all came to me. It was kinda like speed dating haha (because we were short on time). I had apparently experienced a team approach when I was a child here in LA, but I was too young to remember or appreciate it. It's really cool to think that I can have a whole team of professionals working together with their respective specialties and perspectives, all coming together for a unified approach to my treatment. The purpose of speaking with all these doctors was mostly informational and speculative--as opposed to practical with the stated intent to do procedures--but nevertheless, it was a wonderful opportunity, and I'm glad we took advantage of it. If nothing else, we got to meet and talk with an incredibly friendly and pleasant team of doctors, at a beautiful and state-of-the-art medical center. 

I came into this weekend wondering if anything might come out of it that could impact my future, or lead to me choosing to be further involved with TCS going forward. It's probably too early to say, but I think if there is one area in which I'd be interested in being involved, it would be advocacy in terms of speaking to young parents with young children with TCS. At this retreat, there was a young couple my age who spoke on Friday night. They have a nine-month-old son with TCS, and they were pretty brand new to all of this. I chose to reach out to them at one point during the weekend, because I wanted to encourage them and show them what a son with TCS looks like 30 years down the road. That's the kind of thing I think I can get passionate about: Going to events and speaking to young parents, giving them hope and encouragement, using my life history and my parents' decisions as an example and an inspiration for what they have ahead of them as first-time parents of a child with TCS. Because I'm sure that having a child with TCS is very scary and overwhelming, with so much doubt and fear and uncertainty about the child's future and what decisions they should make. So if I can provide some hope and encouragement and reassurance that things can be OK, that would be a cool thing to be a part of. I suppose it remains to be seen if I will pursue something like this or if there is opportunity for it, but if there is, maybe that will be something I could be useful with. 

I want to make further mention of the fact that my mom accompanied me to this retreat. I was going to come regardless, but she ended up choosing to come with me, and I'm glad she did. She was a valuable source of information, in terms of providing information about my medical history, collecting information from the presentations and doctor visits, and being really good about engaging other parents and families with TCS children and asking questions about their experiences. In addition, her companionship was appreciated, because while I would've gotten by more or less alright if I had been on my own, I would've been the only one at the retreat without a companion with me, and that would've inevitably led to a little bit of awkwardness and periodic loneliness; so her presence was helpful. 

All in all, this trip consisted of some new experiences, and a couple steps outside my comfort zone, but I think it went well, was worthwhile, and I enjoyed myself. I may not have interacted and engaged with my fellow TCS peeps as much as I could/should have, but the fact that I was there in the first place is hopefully a victory; and while I may not have gained a ton from interacting with them, hopefully they and/or their families gained something from interacting with me. In any case, I had a good time, and wouldn't be opposed to doing it again. I made a few new friends from other parts of the country who I'll hopefully stay connected with, got introduced to several awesome doctors and an awesome medical center for future reference, and may have found a bit of a calling, or way that I would be interested in being involved in TCS advocacy. Sounds good to me! 

Random Thoughts on the Meaning of Life

So lately, I've been unhappy with some of my decisions that I've been making. I won't elaborate, but it led to me thinking to myself that despite that, life is good, and it'd be nice if I could just make good choices consistently, so that I could be living in a way that I'm proud of myself all the time, not just here and there. 

But then I sort of caught myself and realized that even if I were living that way, that's really not what life is all about. I might feel good and be somewhat happy, at least for a while, but that would still be missing the point. Many people think that if you live a good life, be a good person, provide for yourself and your family, help others, etc., you have lived a good life. I haven't done all of those things, but I'm somewhat of a "good person", and even seem to manage to inspire people by the way I live despite the medical condition I was born with (which is called Treacher Collins Syndrome, for those who don't know). 

But coming from a Christian worldview, I know that when it really comes down to it, none of that stuff matters. Don't get me wrong, all those things are good in and of themselves. But when you're talking about what life is all about—or the meaning of life, if you will—I know that the primary purpose that we are here for is to be in relationship with God. Do that, and everything else listed above will come naturally through and as a result of that. Thus, that ought to be my primary concern. 

But the devil is smart, and knows that if my time and energy is going elsewhere, he's winning. This is true even to the extent that my life could look as good as can be by the aforementioned measures—I could be the most law-abiding, moral person in the world, volunteering my time to help others, raise a family who I love, and still end up in hell. That may sound like a shock to some people, but I believe it's true. Anything we do in our lives that doesn't include being in a relationship with God or sharing Him with others, is a victory in the devil's book. He doesn't have to destroy our lives, or lead us to destroy others. All he cares about is our eternal destination—whether we spend eternity with God, or separated from God, as he is—and that is dependent upon whether or not we know God. In fact, Satan probably prefers that we are happy and successful in life by the aforementioned measures. Because as long as we are distracted/busy/preoccupied/etc with our own lives and making ourselves and/or others happy, we won't have any energy left for God.

And that's where I stand. I believe I have entered into a relationship with God, but the last several years, I've been putting all my energy into myself. My primary concern has been making myself happy, and that has been the single most influential factor in almost every decision I make. That may sound bad, but it's true. For me, I see my life as following one of two paths. Either God will be at the center of my life, or I will. If I choose the former, I believe life will work out exactly as it should. I will be happy, my life will be a blessing and benefit to others, and most importantly, God will know me. If I follow the latter, I may have some fun and do some good and seem to live a pretty successful life; but in the end, it will be a failure. Because in the big picture of eternity, this life is but a blip on the radar. Hence, what happens in it matters little to Satan, or perhaps even to God. What matters most to both of them, I believe, is whether I am in relationship with God, and leading others to Him. If I am, God gets what He wants and what He created me for. If not, Satan wins, because that's less people spending eternity with God, and more people spending eternity with Him (which, the fact that we're with him is probably beside the point; i.e., I don't think he wants to torture us for eternity, he just wants us to be like him, separated from God). 

You would think that since I realize all this, and say I believe it, that I would change and surrender my life to Christ. But as it stands now, I'm having too much fun serving myself (dancing, going to concerts, going on trips, going out, making friends, pursuing girls, pursuing whatever it is that's on my mind, etc.) that I don't have much desire or incentive to serve God. That sounds terrible to say, but that's where I'm at. And again, that's all it takes for Satan to get what he wants. Even if I'm already saved, if I'm living a life where God isn't a big part of it, I'm less inclined to share the gospel with others, and Satan will take that every day he can. We'll see what the future holds. Hopefully, I'll come to a point of surrender. That could come by a variety of methods. My hope is that it comes "gently", and not by tragedy, but that remains to be seen. God knows how the story will play out. I don't, but I do have some control over it...

Nashville/CMA Fest 2016, Day 3

Man, writing these things at 3 in the morning ain't easy....

So today was decent. It still lacked the excitement/stimulation/thrill that Monday had, but to be honest, that level is pretty hard to reach, or at least unlikely. Today consisted of live music all day at the festival Kickoff Concert featuring Sirius XM Highway Finds at the new Ascend Amphitheater, followed by a couple other shows downtown, and ended with me going out to a couple bars.

The highlights of the first part (kickoff concert) was seeing Kalie Shorr (an artist who I had recently discovered) for the first time in person, and having Clare Dunn appear to notice me in the crowd and wave to me. The highlight of the second part (downtown club/bar shows) was seeing and meeting Hailey Steele (another artist I had recently discovered) for the first time, and watching Craig Morgan and Adam Sanders in their show (as well as a couple special guests that Craig brought out). The highlight of the third part (going to bars) was meeting a couple girls, one of who recognized me from Whiskey Jam on Monday, as I had run into her there.

So that's about all I have to say about Wednesday. See you guys tomorrow...

Nashville/CMA Fest 2016, Day 2

Well, overall, today wasn't quite as exciting as yesterday, at least from a social perspective. HOWEVER,  there were still some noteworthy moments, certainly from a music perspective:

The first half of our day consisted of a lot of touring. First, the Country Music Hall of Fame and Museum. Next, RCA Studio B. And finally, the Grand Ole Opry. All three were fun and informative, and I enjoyed learning about some of the history of country music (though I had done some of those tours before, so it wasn't all new info and experience for me, whereas for my mom it was).

After that, we went to the City of Hope Celebrity Softball Game. It was fun. We had pretty good seats, and it was fun to see the artists competing and interacting with each other. 

After this, we had a bunch of dead time before we went to the Opry that night. We chose to kill it by going to Whiskey Jam at Losers, followed by dinner at The Row while watching Steel Blossoms (a female duo that I follow and had seen the previous night at the same place). 

Then it was the Opry. Our seats were amazing--easily the best seats I've ever had there. We were in the 3rd row just left of center. The music didn't disappoint either. The lineup was Darius Rucker, Jeannie Sealy, Lindsay Ell, "Whisperin'" Bill Anderson, Charles Esten, Carrie Underwood, and Chris Janson. Everyone did great, but the ones who stood out the most to me were Charles and Chris. The reason was somewhat the same--I had not seen either of them before, and was surprised and impressed by their performance. With Charles, I knew of him, but never followed the show (Nashville). With Chris, I knew his songs from the radio, but was not particularly a fan of any of them. Both were very energetic and highly enthusiastic in their interaction with the audience. But both were also great singers. Chris stood out to me the most, and "won" the night, if I had to vote. But at the same time, Carrie was flawless, Bill was funny, and Lindsay impressed me with her guitar ability. Great show overall.

After the Opry, my mom and I took an uber back to the hotel, where we dropped her off, and I continued back to downtown to try to find some more fun to end my night. I didn't end up finding much. The most notable thing that happened was that I ran into John Stone, an artist who plays Tootsies sometimes, and happened to be playing tonight. I said hi to him after he finished, and he invited me to come back the next two nights.

One other highlight from today that I want to mention, has to do with the softball game. I took some pictures and video while at the game, and posted some of them on social media. Well, one of them was a video of Cassadee Pope getting a hit. She happened to see it, and decided to retweet it with a quote of her own. This was really cool, because she doesn't do a whole lot of that. In fact, of all the times I've tagged her, I believe this is the first that she has ever responded to me in any way (including a couple pictures I posted of her from the softball game). So that was really cool. I can use that as discussion material when I meet her later this week. Plus it caused my twitter notifications to blow up for the rest of the day, which was fun.

So now it's Wednesday (was too tired to finish this post last night). Should be another day filled with live music. I also have some friends who will be arriving or otherwise available to hang out today, so let's see if I can meet up with some of them. Cheers to another great day in Nashville!

Nashville/CMA Fest 2016, Day 1

Wow....What. A. Day. This was our first day here in Music City, and what a day it turned out to be. This was my first time in Nashville in THREE YEARS, and my mom's first time ever. Needless to say, there was a lot of excitement for both of us. And man, did today live up to the hype. Forgive me for boasting, but I'm gonna give you a rundown of today's events. Can't believe it turned out so well...

We got into Nashville at about 3:30pm local time. From there we went to our hotel, checked in, and got situated. Then we went into downtown for the first time and met up with my friend Tiffany, who just moved here from California a couple months ago. We walked around for a bit, then got dinner at Puckett's. Dinner was great. I had BBQ, and there was live music, including a female singer who I took a liking to, and subsequently talked to after she finished. Her name is Nessa Survant.

After dinner, we headed back to the hotel to drop my mom off (she was tired after little sleep the night before), and then Tiffany and I headed to Loser's for Whiskey Jam. Whiskey Jam was awesome, as they always have a big show during CMA week (this year they have three). We didn't see the whole thing, but my favorite act was Adam Sanders. He performed some of his own songs, as well as at least one song he's written that have been recorded by other artists. The most notable, and my favorite, was "Ain't Worth the Whiskey", which he wrote with Cole Swindell and one other guy, and which Cole recorded and released as a single, and ended up going to #1. That was really cool to see.

Tiffany left after Adam finished, and I stayed a bit longer to finish my drink, and then headed to The Row to see a female duo I've been following, called Steel Blossoms. Cool story behind that....They followed me on Twitter a while back. I followed them back, and subsequently checked out their music. I took a moderate liking to them, and ended up communicating with them sporadically on Twitter. When I found out they would be performing during my time here, I messaged them and told them about it, and that eventually led to me going to see them tonight...They sounded great. The coolest part for me was the fact that they knew me by name. In fact, they said hi to me while performing on stage (in between songs) after I walked in. That was simply awesome. Then after they finished, they came up and talked to me for a bit, and ended up taking a picture with me with their own phone. I thrive off of interaction with artists, so to experience such personal interaction with these girls was thrilling. Sure, they may not be well known. But they're still professional musicians--and good ones at that--who pay enough attention to their fans/followers to know them by name, despite having never met me in person. That's awesome.

After that I went back to Loser's for a bit, because my friend Blake informed me of two friends of his--Heather and Kim--who now live in Nashville (but formerly lived in CA) and were working at Whiskey Jam tonight. I wasn't sure if they knew me or not, but as it turned out, once they saw me, they both got very excited and came over and greeted and talked to me. That was followed by a picture, and Heather asking me to two-step with her, which I did, to Jerrod Niemann, who was the final act of the event. After that, I met a guy named Rob, who recognized me from a recent concert I was at in CA. He works for a major artist (I'm gonna keep the details to myself), but he was super nice, and he and I exchanged info. Then after that I met a girl named Jordan, who was very nice, and turns out is also a singer songwriter. I may meet up with her, as well as Heather and Kim, and maybe even Rob, later in the week.

After all of this, I went over to downtown again, to Tootsie's, where my friend Scott was playing. As soon as I walk in and he sees me, he invites me up on stage with him, as is our tradition. Bear in mind, I am the last person who deserves to be up on that stage. Nevermind the fact that it is a legendary stage where so many great artists have stood and performed....I can't sing....So for me to be up there was definitely not something I deserve. On the contrary, Scott is an amazing guy; so kind, that despite my poor ability, he invites me up anyway, just to shine the spotlight on me a bit. We sang a few songs, and then I got a drink and walked around a bit (including checking out Tootsie's new third floor rooftop patio, which did not exist the last time I was here). Eventually I left and came back to my hotel, but not before Scott ended up inviting me on stage yet again to sing some more. I tell you, that guy is so generous,

So in closing, today was pretty epic, and far greater than I saw coming. If this trip continues like it did today, I might die from overstimulation haha. I guess this town loves me as much as I love it ;-)

Garth Brooks Concert Review

On Saturday, November 7th, 2015, I went to a Garth Brooks concert for the first time. It was in San Diego, at Valley View Casino Center (formerly the San Diego Sports Arena). I had never seen Garth perform live before, so this was my first exposure to him of any kind in-person. 

As you can imagine, I had high anticipation and expectations of how he would be and what I would see. After all, he’s won multiple Entertainer of the Year awards at the CMA and ACM Awards, and is widely considered an exceptional performer and entertainer—one of the best in country music history, and perhaps even all musical genres.

Well, he definitely didn't disappoint. My friend Valerie and I did have two 6’5” football players in the two rows in front of us, which limited our view and allowed me to see Garth only about half the time, but aside from that, the concert was awesome.

The most notable element of the show, which made it and his performance stand out the most, was the energy. I’ve been to a lot of shows, and seen almost every famous live act in country music, including possibly all of the nominees for Entertainer of the Year at the CMAs and ACMs in the last five or 10 years, and I have never seen anything quite like this. Garth Brooks had more consistent and nonstop energy and enthusiasm than anyone I’ve ever seen. And don’t worry, he only played for two hours, this being the third show in as many nights, with another one coming up the next night, AND one more THIS SAME NIGHT AFTER MY SHOW!! It’s not like he needed to conserve himself or anything…

Seriously, it was very impressive. And it wasn’t just him either. I’ve never witnessed an audience so loud and consistently electric. Everyone in that building was cheering during every song, knew all the words, and stood almost the entire time, even though they all had seats. Obviously it helps that he has so many well-known songs and hits (he is one of the most successful artists in music history), and that he is touring for the first time in 15 years and was visiting San Diego for the first time in 19 years. But all of that notwithstanding, it was an audience response that was exceptional.

And to his credit, he encouraged it and took advantage of it. Audience interaction and involvement, at least in my opinion, is a key element to what makes any artist a great live act and entertainer. Garth did plenty of that. He let us sing choruses, sing verses, held a cheering competition between sections, and yelled and cheered during every other song, further energizing us, which in turn further energized him. He even pointed it out early in the show, saying that he had to do so many shows in so few nights, so we would have to carry him. And carry him we gladly did.

Another thing I loved about him was his song choice. Though he left a few out that I would’ve liked to see (“If Tomorrow Never Comes”, and “Beaches of Cheyenne”, to name two), he was smart in that he stuck almost completely to his old stuff. In fact, he only played ONE song off his current album (in comparison to which everything else is “old”, since this is his first studio album of all-new material in almost 15 years). And he knew what he was doing—he stated early in the show that when he goes to shows, he goes for the old stuff. 

Adding to the uniqueness of the show was his band and crew. He thanked his crew member (John was his name) every time he handed him a guitar between songs. And among his band (background singers included; and he introduced everyone extensively), every single member has been with him for 20+ years (one of the funny moments of the show was when he introduced “the rookie” of the band, who has been with him for 21 years I believe). That’s astounding. Granted he took the last 15 years off of touring, so assuming he wasn’t omitting those years, that statistic is a little skewed. But at the same time, the fact they they would all come back and tour with him again after all that time away is surprising and impressive. Another cool moment was when his wife Trisha Yearwood introduced one of his background singers, who she said was a songwriter as well. Trisha performed one of her songs, and had her come out and sing part of it center-stage by herself. She (the background singer) was clearly very appreciative, and it was a really cool moment to watch. 

In closing, I want to mention that Garth and his team market his shows as “The Garth Experience”. Prior to the show, I figured that was just a creative and more-or-less meaningless slogan. But after seeing his show, I can attest that it is definitely an accurate expression and description. It was unlike any show I’ve ever been to. Unbridled and consistent enthusiasm from both Garth and the fans for two hours. I don’t know how much of what he does is an act or is scripted, but however much of it is or isn’t genuine almost doesn’t matter. I mean I hope it’s genuine, and I wouldn’t want to see exactly the same show the next time I see him, but regardless, he gets that energy and enthusiasm from somewhere (I don’t know where), and I believe he truly enjoys it (at one point in the show he said something to the effect of being very happy and thankful that he got to do this earlier in his career, and now again 15 years later). So even if some of what he does is a bit scripted or manipulative in order to get the crowd into the show, it’s almost like who cares? His job is to perform and entertain, and he clearly does that. 

The Inspiration Issue

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.