58. Caught in the in-between, a Beautiful Disaster

58. Caught in the in-between, a Beautiful Disaster

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 cynical, 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.

After a surgery
After a surgery
4 years old
3 years old
IMG_1044
6 years old
IMG_2293
9 years old
12 years old
12 years old
8th Grade
14 years old
High School
17 years old – High School
College
20 years old – College
23 years old
22 years old
25 years old
25 years old
SDC10074
27 years old
Present day me
Present day me

I never really minded the hand I was dealt. I steadily rode the waves of my syndrome as I danced through life. 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 32 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 can’t relate.

Fourteen 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 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- 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?

The vanity of online dating pains me. 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. My questionable suitors lacked knowledge of grammar, imagination, and shared interests, all of which were important to 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.

TCS friends
TCS friends

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. Vincent (from CW’s Beauty and Beast) suffers a genetic mutation caused by a government experiment that leaves him beastly as his emotions intensify. The government attempts to conceal its wrong doings by exterminating all those impacted. Vincent unknowingly survives and is forced to lead a secret life out of the reach of human contact. 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 32, 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. They’re more like bats than butterflies now.

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 32 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. That is a true Krisbit.

Present day me
Present day me

58. Caught in the in-between, a Beautiful Disaster- Beautiful Disaster by Jon McLaughlin

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17 thoughts on “58. Caught in the in-between, a Beautiful Disaster

  1. What a genuine story. It was interesting to me that while I don’t have Treacher Collins Syndrome, I really still related to the underlying message of being held back by self esteem issues. I was the awkward late bloomer (I think I’m finally actually blooming a bit in my 40’s) and am still so insecure about meeting new people because I (truly believe that I) come across as plain, overweight, unattractive and boring. And I only have my own inner voice to blame for that. I appreciate you sharing your story and I can’t tell you how much I LOVE that last picture of you! Gorgeous and strong!

  2. a friend referred me to this post. Reading this, you seem to be a beautiful, intelligent, confident, articulate, and compassionate woman who is absolutely deserving of love in her life. It’s never too late. My friend is 32 and she just met her first boyfriend this year. Her story is different from yours however what helped her was always keeping herself open to the possibility of love. Sometimes she would get very discouraged and want to give up and at times she did close herself off. But she always picked herself up and tried again. If you see someone staring and you don’t know if it’s the typical awkward gazing or if it’s something more, smile and wave and find out! That’s the only way you’ll ever know. I’m sure that’s easier said than done on my part and I do apologize for that, but when it comes to dating in your thirties, you can’t hold yourself back. And sometimes you need to just give guys a chance online. Sometimes a man might not have the best grammar or shared interests or not be able to express himself properly online. Sometimes if you met a guy for a date, in person they can be quite different from online. Sometimes it’s better, they might spell poorly but in person they are quick witted and clever, or someone who seems shy and awkward online might light up when they meet you, or sometimes a guy seems wonderful online and in person is a total dud. It can go so many different way and the only way to ever know is to go for its me just keep trying. You say even after this confession you will continue to be guarded and that is your krptonite! I don’t judge your for being guarded, I haven’t walked in your shoes but if I did I would probably be the same way. But that won’t help you find love, and it sounds like you have a lot of it to give and somewhere out there is someone who deserves your love as much as you deserve theirs.

    1. It’ll take a little while for me to open myself up to love again, if I was ever open in the first place. I can tell you that after writing this, I already feel bolder and braver. As for the poor grammar during online dating, it was more like “hey gurl how u doin”. If it were only spelling mistakes, I could deal. Yes, it’s probably judgmental on my part, but I’d prefer not to online date. I won’t be making any more profiles.

  3. Wow, this was such a powerful and poignant writing – truly admire you. And by the way – I DO think that you are beautiful. You should get out there, girl.

  4. Thank you Kris for sharing so much of yourself, your true self! You ARE beautiful on the outside and the inside! My dear 16 yo niece has TCS and I have always loved her so much. I have always loved her beautiful, different face at all the stages of her life (birth, pre & post multiple surgeries. I know she has read your words, because my sister (her mom) sent me the link to our blog/story. I also believe like you, that life is just a “roll of the dice” and what is important is how we handle it. I am amazed not only that you shared your “secret” feelings, but that you were able to figure them all out and still have understanding and compassion for yourself and for others. I feel honored that I got to read about you! You are amazing!

    1. Thank you, Barbara! Family is the best support system. My younger cousins, whom I consider my sisters, always thought I was beautiful and never second guessed my appearance. Best of luck to your niece! If there is ever anything in particular she (or you!) would like to know, please ask! Sometimes it’s nice to have your own thoughts and experiences validated by someone who has gone through something similar. Yes, self-confidence is a universal issue, but digging deeper can explain so much.

  5. thank you for this beautiful piece of writing, you are amazing, and I think that like all good writers you’re helping the rest of us dummies grow into better humans. Here’s to THIS year, YOUR year, because you are truly beautiful, and as random as the universe is, your beauty is not going unnoticed.

  6. Reading your bit, I feel less isolated, less oppressed by my self-esteem issues. I am grateful for your honest sharing. Thanks, joy to you.

  7. Your cousin, Marina, sent me your post as I went to college with her. I also have a disability and can’t express enough how beautiful your words are. You share such a rawness with beautiful honesty that so many people can relate to. You’re not alone with these experiences and there are other people various ages, abilities and genders encountering this. You are so powerful and beautiful. Can’t express how grateful I am to come across your words! All the best- Kristin

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