Confronting My Reality – Part 1

I’ve never been one to confront my uneasiness with a head-on crash; I’d rather cautiously navigate around my feelings without leaving an emotional wreck in my wake. Believe me when I say my stoicism runs deeper than just the mask you see.

With a heavy dose of irony I tell you that as vocal as I am about celebrating one’s uniqueness, there are times I avoid mine at all cost. If I’m urged to share the stage with others who hold similar life experiences, I momentarily lose interest in being a gladiator for self-acceptance. It becomes both a reminder that far too many of us share similar struggles and a realization that my hardships pale in comparison to others in paralleled circumstances. For example, the severity spectrum for Treacher Collins Syndrome ranges anywhere from being barely noticeable to being considered essentially born without a face. Despite any number of surgeries, the life of someone with a severe case of TCS may never skim the surface of normalcy. There is no way I can compare my story to theirs even though I have had my fair share of battle scars.

In a much different light, by associating myself with another person living with a craniofacial anomaly, I create a bond that I’m uncomfortable fusing. Our commonality forces me to address my own syndrome. Since I was raised in a nurturing community, it wasn’t everyday I saw myself as being any different than my classmates or friends. I went to Catholic schools my entire life and in my more formative years, I dedicated any free time I had to gymnastics. I had grown up with the people whom I spent the most time around; they were already accustomed to my features. Though I knew my life was a bit out of the box, my upbringing shielded from being some bully’s verbal punching bag. In some ways I still very much enjoy the naivety attached to forgetting that my life has been less than normal.

shenanigans with friends back in the day

Because of the unorthodox combination of those juxtaposing sentiments, I often hesitate before opening my mind to experiences centered around facial abnormality. Shortly after one of the surgeries I had in high school, my surgeon mentioned a summer camp for kids with craniofacial anomalies and their families. He thought I might want to volunteer my time to kids undergoing a similar struggle that I endured. But after just having undergone two surgeries in a two-month period, having my jaw wired shut, and experiencing the worst pain of my life (I’ll save those details for another time), the last thing I wanted was to spread optimism to children who might someday experience the same. I wanted to forget the last two months, not relive it.

The following year he mentioned the camp again and I obliged to spend the weekend being a role model. The anxiety one feels when starting a new school was exactly what coursed through my veins on the drive down to Camp Super Nova that summer day. What I hadn’t realized was that for the first time ever I would be entering an unknown scenario completely free from judgment. Every attendee of the camp was associated to an anomaly in some capacity, whether that person be the child with the syndrome, a sibling, or the parents. There wasn’t a single person that weekend that didn’t show love and compassion. Because everyone dealt with something similar, I noticed zero double takes, sideways glances, or pointing. This truly was a weekend for the families to realize they weren’t alone, for the kids to be kids free of hesitation, and for the parents to find support they may not have known they needed. For the first time in my life I had been around strangers while entirely free from judgment.

Camp Super Nova 2001

Camp Super Nova 2001

By the second year I volunteered, I offered up my own beliefs on the values of surgeries. I told the parents that even though their kids would protest about hospital visits, they would prove to be life changing in the grand scheme of things. No parent wants to see their child lying incapacitated in the ICU with tubes down her throat. In the present, it would be one of the most heart wrenching moments of being a parent, but in the future, it would be simply a memory. As a teenager, I cried and protested when finding out I’d have an operation after a seven-year hiatus. I can’t even imagine who I would be or what kind of life I would have if my parents relented to my outburst. I guarantee you one thing; I wouldn’t be sitting here writing about my journey.

A few months ago, I found myself in another predicament of choosing whether to confront my reality or to ignore it. A friend suggested I read a best-selling book about a boy with an extreme craniofacial abnormality. She had been reading it with her students and thought I would appreciate the message, as it is similar to my own. I once again skirted around the idea of celebrating someone else’s uniqueness because I didn’t want to be reminded of mine. Was I worried I would have nothing in common with the main character? Or was I afraid of the similarities?

To Be Continued…

 

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