A Beautiful Disaster

By Kristin Bartzokis

This blog was originally posted to the author's personal website, beautiful disaster. Kristin Bartzokis is an athlete, artist, and writer.  She was born with Treacher Collins syndrome and documents her life experiences in her blog Diary of a Beautiful Disaster.  Her first book, also titled Diary of a Beautiful Disaster, releases March 21, 2017.  You can preorder it here. 

This will be the most raw and vulnerable you’ll ever find me. It is also one of the hardest truths I will ever write. I don’t speak of it often but it controls my life more than I care to admit. I’ve tried many times to express this but I guess I wasn’t quite ready to let the world know the deepest part of me. It only makes me a sliver of who I am yet sometimes I feel it controls the reins.

Many would call me hard or stoic. I would concur. I’ve worked tirelessly over the years to learn how not to cry, to build a wall around my emotions, and to never expose my heart. It comes with the territory. I’m my own worst enemy. I’m the sole reason for my own emotional sculpture.

Growing up I believed that everything happened for a reason. God only gave people what He knew they could handle. The strong were thrown curveballs because they would be more apt to hit homeruns than strike out. I clung to those beliefs for as long as I could; I had to in order to stay sane through years of hospital visits. Eventually I came to determine that life consisted of moments of chance, coincidence, and pure luck. A more realistic approach to life said there was no such thing as fate or destiny. My Treacher Collins Syndrome came from a random genetic mutation: plain and simple. It wasn’t written in the stars. It wasn’t because God knew I’d value my strength above all else. It was random. It could’ve been you instead of me who was dealt this burden. Maybe you would’ve handled life differently. Who knows?

For the bulk of my existence, I felt like an unfinished painting that constantly needed tweaking. Each year I went to the reconstructive surgeon knowing he would find the next flaw to correct. Would it be my underdeveloped cheekbones again? Or my recessed jaw? Maybe my malformed ears? After years of being scrutinized, I began to see the flaws myself, flaws no one else noticed. I gazed into the mirror and saw the uneven shapes of my eyes, the asymmetry of my jaw, the barely noticeable depression on the tip of my nose, and the scars left behind as proof of my struggles. Though my reflection transformed over the years into something I quite adored, I always found new faults.
I never really minded the hand I was dealt. I’m proud of who I am and how I got here. I had a great childhood filled with amazing family and friends; I couldn’t have asked for better parents. I wasn’t bullied or afraid. I accomplished things that most could only imagine. I was athletic, creative, and intelligent. I lived abroad and traveled the world. I sometimes forgot I was any different than everyone else, and in retrospect I wasn’t.
A tiny slew of details, though, remind me that I’m unique. I’m 34 years old and have never been on a date, never been kissed, never had a boyfriend. As my friends get married and have kids, I’m still stuck in a moment that has passed. I never knew the feeling of being pursued by a flame in high school. I never experienced what one’s supposed to experience in her youth. No one asked me on a date. My dad didn’t have to clean his gun in front of a gawky teenage boy because my affections were never reciprocated. I never had anything to offer as my friends sat around talking girl talk. I couldn’t relate. I still can’t relate.

Sixteen years have passed since I graduated high school. Life can change in the blink of an eye, or in my case, stay annoyingly stagnant. I’m still weighed down by the emotions of a wrecked teenager trying to keep up with her peers. That largely causes me to guard my feelings, because if I expose them, I may fall apart.

I had plenty of crushes and always hoped that the current year would be “the year” for my first date, though I knew in the back of my mind that nothing would change. I never imagined my innocence would last into my thirties. I used to shake off the notion of being left behind with the excuse that I’d be having another surgery soon. No one need be around during that process except my family. Frankly, who would want to be? As the years turned, I ran out of excuses. I’m not ready. I’m studying abroad. I’m moving. I’m picky. I’m trying to find myself. Florida boys are idiots. I enjoy being alone. I’m meant to show the world that physical beauty isn’t synonymous with perfection…by dating a celebrity. (Ok, that last one was a stretch but a girl could hope.)

There are only two palpable reasons for my unconditional singleness these days: I lack self-esteem and I’m completely terrified.

Self-esteem fail #1- Slow Dances
In the course of my schooling, I was never asked to dance except by boys whom my friends made ask me. God bless my friends. They meant well, but I’d rather go seek shelter in the bathroom during slow songs than have someone coerced into dancing with me.

Self-esteem fail #2- When Someone Just Wants Anyone

There have been a couple guys in the past who have expressed interest in me, but as it turned out, their interests were more out of a desire for anyone and not me specifically. Thankfully, I found this out before I invested my dignity, but the walls around my heart grew increasingly in size and strength. I am neither cheap nor desperate. I will not be someone’s crutch valued only by his injury. When he heals, he loses the need for me. When the person he really wants to date becomes available, he’ll pull me from the game, as I was only a pinch hitter.

Self-esteem fail #3- Unwanted Stares

I understand. It’s common to gawk at something foreign. It’s a curiosity of the unknown, the fascination of the abomination. I’ve been stared at my entire life from people of all ages. It may enrage me, but I understand it. Staring is also a common form of flattery and flirting. I’m accustomed to having eyes on me for my looks, but I can’t decipher when those gazes mean more than just gawking at my uniqueness. I will never hold your gaze unless I’m trying to make you uncomfortable and look away first. (It’s a game I’ve always played with obnoxious children.) The truth is I’m uncomfortable being the sole focus of someone’s attention even if the gaze is full of adoration instead of curiosity.

Self-esteem fail #4- The Dreaded Online Dating

Match, eHarmony, OK Cupid, Plenty of Fish, Tinder- I created profiles for them all to appease certain people in my life, but never actually went out on any dates. Despite what these sites lead you to believe, online dating starts with physical attraction above all other forms of compatibility. If the opposite party likes your photo, they’ll message you, more often than not without viewing your profile. But even if they did, what’s the etiquette for stating your physical differences? If I deliberately call out my syndrome, I’m not staying true to myself- a self who, aside from the reminders found in mirrors, doesn’t feel any less normal. But if I don’t call it out, is it fair to a potential date? Would I want to be blindsided?

I’m pained by the vanity of online dating. During my secret attempts on these sites, other online daters I knew boasted about the number of (hot) guys that messaged them daily. I kept my mouth shut. My pool of options was more like a miniscule cesspool and needn’t be revealed. I could count my matches from all dating sites on one hand, and those questionable suitors didn’t even seem that interested in getting to know me.

Self-esteem fail #5- Generalization

Google Treacher Collins Syndrome and you’ll find photos of people who look eerily similar no matter their race, gender, or age. If you know the characteristics, it’s easy to discern who has TCS. Years ago, I volunteered at a camp for children with craniofacial anomalies and met other adults and children with the syndrome. Even in a place overrun by abnormality, people still questioned if we were related. It’s funny how a person can stand out in every single crowd yet is generalized by her flaws. No. Every person with Treacher Collins is not related. Stop generalizing. Stop diminishing each surgery I had by pointing out I have not succeeded in improving my traits. I have. I know I have. I don’t look like my younger self. I’m much happier with the person I am today than the person I was before each previous operation. I will gladly share my knowledge of and experience with TCS, but I don’t need to be reminded that my syndrome still reluctantly defines me.

Self-esteem fail #6- History and Hollywood

Have you ever noticed that whether in history or Hollywood, those with facial deformities (any deformities really) are cast as unsuitable to society? We’ve been left for dead at birth, accused of being cursed, and killed mercilessly all because fear suffocated instead of celebrated our uniqueness. That was our reality in the past, and most certainly still is in less civilized parts of the world.

Entertainment still brands us though. The Phantom (from Phantom of the Opera) hides behind a mask and lives in the shadows because the community lacks compassion for his facial deformity. Clarissa (from CW’s Reign) is disfigured after childbirth while an attempt to remove a facial birthmark fails. Though ordered to be killed, she, too, ends up living in the shadows with her face kept covered. Tell me, how am I supposed to feel about being physically different when my people have been portrayed in darkness instead of light, feared instead of revered? While Hollywood preaches acceptance in their own way (a deaf character in 7th Heaven, a visually impaired character in Pretty Little Liars, dwarfism in Game of Thrones), I’ve yet to feel a connection to one of these characters because they’re all otherwise beautiful actors. Until the Phantoms and Clarissas of the world aren’t portrayed as shameful secrets, I can’t feel completely whole. Perfect beauty is Hollywood’s reality, but reality isn’t perfectly beautiful.

Somewhere during the stretch of time, I stopped hoping that this would be ”the year.” I stopped believing in love. I stopped dreaming about a wedding. I gave up. By no means am I old, but with each passing year I drift further and further away from a reality that I struggle to believe exists. Because of this, I defer to fantasy. I easily lose myself in books and movies since successful storytellers seduce their audiences with their imaginations. I may not possess firsthand knowledge of nerves before a date, but I connect through an author’s emotional investment in her characters. Reading transports me to a world in which I am unfamiliar but desire to know. Perhaps that’s why I dream so vividly: my imagination draws from what another’s has concocted.

Since my experiences with dating rely solely on books and movies, I’m terrified of the day I may finally catch up. I’m 34, not 16. It’s pretty embarrassing to explain my lack of experience at this age. Do you remember how huge those butterflies were in your stomach before your first kiss, first date, first anything? Let me tell you, those butterflies grow at the same rate you do. And when you stop growing, they continue. The nerves feel more like bats in my stomach now, not butterflies.

Neither virtue nor morals have kept me on this path, though that would be a hell of a lot easier to admit to people. Fear has unintentionally cut me off from dating. I don’t make an effort. I simultaneously cower in terror and shame. I take the blame for my single life. If I can’t shake my past and tame my shame, I can’t build my future.

I didn’t write this for your pity or comments or concerns. This is who I am. I’m a 34 year old who feels more like a girl than a woman. I’m someone who, despite having all the strength in the world, found a kryptonite in dating. I’m someone who loathes being asked whether or not I’m in a relationship because I’ve grown annoyed with saying “no.” I’m someone who tires of being a bridesmaid without a chance of being a bride. I’m someone who fights for her cause yet lets her cause cripple her. I’m someone who finds joy in breaking barriers and has no intention of ceasing. I’m someone who can handle being told that I look beautiful, but not that I am beautiful. I’m someone who has confidence in what she sets out to do, but sometimes lacks confidence in who she is. I’m someone who has fallen prey to society’s demand for perfection yet understands that perfection is subjective. I’m someone who loves herself, but every once in a while wonders what life would be like as someone else. I’m someone who understands that her problems are petty compared to those of others. I’m someone with many layers that may never be revealed. I’m someone who will continue to be guarded despite this written confession.

I didn’t write this for your pity. I wrote this because I couldn’t imagine a more poignant way for me to help you understand who I am.  I am the girl with Treacher Collins syndrome, but more importantly I am Kristin.