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!
