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5 Things My Treacher Collins Syndrome Has Taught Me About Life

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Roughly one in 50,000 people are born with Treacher Collins syndrome each year. In 1982, I was the “one.” And yet despite that, I oftentimes take a look at my life and realize just how lucky I am. I never asked to be born with a craniofacial syndrome, but it happened. Like any other challenge I faced, however, I have grown because of it. I learned certain lessons in life I may not have otherwise learned if I were just another “typical” person. I cannot say I would ever wish to be born with my syndrome; there are moments I would like nothing more than to forget. However, I appreciate who I have grown to become because of it. I have taken those lessons and built myself a solid foundation – one I know I will never break.

Here are five of the most important lessons I have learned from living with Treacher Collins syndrome:

1. Life is about choices.

Some people who face adversity develop bitterness towards their lives. They in turn become negative, difficult people who feel the world owes them everything. I refused to ever view my life this way. Instead, I chose to think of my condition and its painful memories as just pieces of me, rather than what defined me. I understood that the world didn’t owe me a thing because I was born different. I owed the world everything just for being alive. Rather than focusing on the negative factors in my life – the painful surgeries, the constant gawking, the never-ending doctor appointments – I chose to embrace the positive, the ways in which I was ordinary or even extraordinary. I chose to smile at all the good in my life, rather than scowl at the hardships I faced.

My conscious choices have afforded me a life worth living. I could have easily succumbed to my syndrome or seen it as a barrier to living a fulfilling life, but I chose to radiate courage, strength and positivity. That choice has allowed me to become a respected role model.

2. Be open-minded.

I learned that people who didn’t have my syndrome would never understand what it was like to live with it, just as I would never know a life without it. This realization helped me understand that every person has his own point of view, which is largely dependent upon his own unique circumstances. While I may disagree with someone’s opinions, I do not judge them because of it.

Likewise, my open-mindedness also prevents me from jumping to conclusions. I evaluate situations, people and comments so I can make calculated decisions. For example, while some people find the term “Real Life Auggie” to be an offensive way of describing speakers with craniofacial anomalies, I understand that it is an easy way for teachers to correlate the book “Wonder” with the speaker who is coming to address their fifth grade classroom. I may not be partial to the term myself, but given the demographic of the audience, I understand it.

3. You have the power to control how others perceive you.

The realization that my condition skewed many first impressions came at an early age. I constantly noticed the stares I would receive from strangers and it aggravated me. I didn’t want my easiest identifiers – my facial scars, hearing aid, or malformed ears – to define me. These were the physical characteristics that people instinctively noticed, but I knew I was much more than just my appearance. Therefore, even as child, I worked tirelessly to close the gap between when people viewed me as “different” to when they saw me as “ordinary.” I smiled a lot, I never made a big deal about my surgical procedures and I practiced my gymnastics moves anywhere I could because I knew not many people could flip or leap like me. I used my athleticism to my advantage.

woman doing a handstand on a road in the desert

Eventually, the physical characteristics that made me unique dissipated, and people recognized me for other traits. Today, the people I interact with on a daily basis no longer notice my syndrome. Instead, they know me for my positive attitude, mental toughness and the high expectations I set for myself.

4. There will always be people who focus on your imperfections. You cannot be one of those people.

I am well aware that people with facial differences or disabilities were historically viewed as pariahs. And in some cultures, or to some close-minded individuals, they still are; I still am. I am also well aware that I cannot dwell on those people or their malevolent thoughts. Some maliciously think that people like me should have been aborted or are somehow less human because of our facial syndromes. I fight their ignorance by embracing my flaws.

No matter what, no matter how confident or self-assured you are someone will draw attention to your flaws. It happens every day. You cannot let those incidents latch on to you. If you do, they’ll slowly shatter you. I have been there. I have felt insensitive words cut through my stoic exterior and strike me at my core. I have been left vulnerable and shaken by negative words that I allowed myself to believe. It was heartbreaking, gut-wrenching and brought me to my lowest low. But I refuse to let myself be shattered again simply because I cannot see past my imperfections. I realize now that my scars are my own beautiful reminders that I am alive. Every mark, every blemish and every asymmetrical feature on my face tells my triumphant story. I will never again minimize the positive effects they have had on my development.

5. There are multiple types of confidence. You can be confident in what you do, but not in your appearance. Once you find both, you’ll be unstoppable.

Finding self-confidence is a universal hardship. It doesn’t affect only those of us with facial differences. For me, confidence was twofold. I had always been confident in my actions. I knew I was smart; I studied and had the grades to prove it. I also knew I was an unbeatable gymnast and a revered soccer player. My incessant need to practice and improve helped me excel in both. But I wasn’t always confident with my looks. I saw my flaws in the mirror and wished they would just disappear. I managed to appear confident every day because I knew I could accomplish anything; however, my assertiveness masked the apprehension I felt towards my physical imperfections.

One day, it clicked. I looked in the mirror and recognized my reflection as a strong, beautiful woman. The barrier that separated the way I felt about my abilities from my appearance crumbled. I became wholly confident. Now, I see myself through a new filter. My self-esteem is no longer divided and I understand that I have no legitimate reason to doubt myself. This complete confidence has allowed me to live a bolder life, take chances and conquer my fears.

woman at a race wearing a pink shirt that says 'be brave, be strong, be fearless'

I don’t know what kind of person I would have become had I been born without Treacher Collins syndrome. Life with my syndrome hasn’t always been easy. Then again, whose life really is? Through my adversity I learned how to thrive and inspire. For that, I am eternally grateful.

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Originally published: November 1, 2017
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