‘Not being able to smile is the greatest gift I could’ve been given.’: Woman with rare Moebius Syndrome turns pain to purpose 

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Disclaimer: This story contains details of sexual abuse, suicidal ideation, and bullying which may be upsetting to some.

Moebius Syndrome

I’ve been through a lot, seen a lot, and been dealt a lot in my short 24 years of being on this earth, but I’ve come out the other side, turned my pain into power, and now I get to live out my dream reality.

I was born with a really rare neurological disorder called Moebius Syndrome. This syndrome affects my 6th and 7th cranial nerves, meaning my eyebrows do not move at all, I cannot track my eyes from left to right, and my upper lip doesn’t move (which means I cannot smile). Because of this syndrome, I was also born with bilateral talipes (club feet), so in addition to facial paralysis, I have little to no ankle movement and no calf muscles. This is what enabled me to compete as a Para athlete! The syndrome that I have affects one person in every 3 to 4 million, so it is considered extremely rare.

little girl posing for a polariod
Courtesy of Tayla Clement

Trauma & Bullying

Because of my syndrome, I was bullied to a very traumatizing extent all throughout my schooling life. In addition to bullying, I endured sexual abuse repeatedly between the ages of 14-16. This resulted in me being diagnosed back in 2015 with extreme clinical depression, anxiety, PTSD, and disassociative attacks. I was severely suicidal for a very long time, which resulted in six suicide attempts spanning over the course of 7-8 years from the age of 12 to 20. So much so that it is actually medically impossible for me to be alive today as the amount of insulin I would overdose on was 3-44 times my daily limit (I am also a type 1 diabetic). Medical professionals don’t understand how my body is still working, but by some miracle, it is still working. Today, I could not be more grateful for that!

I am now depression-free and have been for quite some time now, but still struggle with my anxiety a bit. I am such a huge believer in everything happening for a reason, so I have now committed myself to being a mental health advocate and public speaker to use my story to help benefit others. I’d like to think that I didn’t go through everything I went through for nothing, so being able to share my story and the lessons I’ve learned to help benefit others is such an incredible life-changing career path. I’ll be forever grateful for how lucky I am to get to help others through my experiences.

Surgery

The bullying I faced and endured stemmed from me not being able to smile. It started out as just name-calling, people would tell me that I was ugly, disgusting, worthless, or that my parents didn’t love me (they definitely did, but it can be hard to depict what’s true and what isn’t when you’re being told these things on a daily basis).  Around the age of 12, I was given the opportunity to have a ‘smile surgery.’ This surgery was extremely invasive; it was eight hours long and the surgeons took the tissue from my right thigh and inserted it internally from the corners of my mouth up to my temples in the hopes that when I clenched my jaw the corners of my mouth would turn upwards to mimic a ‘smile.’

Obviously, this surgery was unsuccessful and it completely broke me at the time. I was left distraught because in my head I thought that if I could smile I wouldn’t be bullied anymore (bear in mind, I was only 12). I went back to school with an extremely swollen face and had to start a new school with the same bruised and swollen face, as the swelling didn’t go down for a good year. That first whole year at the new school I had no friends. I was a library monitor and I just remember feeling down all the time and always embarrassed to be seen. I would walk with my head down because I didn’t want to be seen by anyone or to be made fun of.

little girl in bed after smile surgery
Courtesy of Tayla Clement
little girl getting her syringe
Courtesy of Tayla Clement

The Struggle To Fit In

In the following years, I did make some friends here and there, but the bullying also escalated from just verbal bullying to physical bullying. People would bring plastic bags to school and tell me to put them over my head because they didn’t want to see my ugly face. I got my knees kicked in from behind when I would be walking upstairs. I even remember on a couple of occasions I would be asked out to the movies by a guy. I would be so excited. I would show up at the cinema and they would never show up to be with me. Before I knew it, they would end up walking past the cinema with a group of guys and girls from school and laugh at me. I was even excluded by some teachers as well. I would be the only person with my hand up in class and they would look straight at me and then look away and carry on as if I wasn’t there.

little girl outside
Courtesy of Tayla Clement

Self-Development Journey & Social Media

Growing up was really hard for me, I struggled a lot and always had this nagging feeling of not being good enough. I wanted to be ‘normal’ or to look like everyone else. It wasn’t until I was around the age of 20 and on my rehab and self-development journey that I really started to believe in myself and my worth. I realized that, all along, not being able to smile and being born ‘different’ was the biggest blessing ever! I know it may sound crazy, but I really mean it when I say that I am so grateful for being born the way I have been. I’m even more grateful that the smile surgery I had when I was younger wasn’t successful. Not being able to smile truly is the biggest and most special gift I could have ever been given!

I think when it comes to the climate we are in, and the role that social media and comparison has to play in today’s society, it can be so hard to feel like you’re not missing out, or that you’re not good enough. Or pretty enough. Or skinny enough. I will say though, at the end of the day we all have the power in choosing what we decide to view and the media we choose to consume.

We all have the power to decide who we choose to follow. There can tend to be a lot of negativity online, but I do really believe that there are an equal if not bigger amount of real, vulnerable, and positive spaces online as well. When I started my social platforms I just wanted to be a face and voice of hope, inspiration, and empowerment for people who felt unseen, unheard, and unrepresented. Now I see the impact I am able to have on people just by being myself and pushing the messages I believe in.

woman competing in the parolympics
Courtesy of Tayla Clement
woman competing in the games
Courtesy of Tayla Clement

The Gift Of Being Born Unique

I have already said it, but I will say it again: my syndrome and not being able to smile is the greatest gift I could have ever been given. It has allowed me to help and inspire so many people and I know that I’m only going to be able to help more. It has allowed me to go through some of the worst experiences humankind can go through but has also allowed me to use those experiences to show people that what other people say about you or do to you, does not define you. It has allowed me to realize I can do anything I set my mind to, and it has allowed me to inspire others to do the same. I really needed someone like myself now, when I was younger. I needed to see someone like myself on the cover of magazines, in the media, doing interviews, sharing their story, and telling me that if they can do it, then I can too. And that is what I’m striving to be and do now.

There is one quote I always come back to when I am asked what I would want to tell my younger self, or to anyone out there who may be struggling right now: ‘That no matter what, we are all born the way we are for a reason, we are all here on this earth for a purpose. The experiences we face and the struggles we may endure aren’t there to test us but to make us stronger and more resilient.’ I don’t have superpowers, I wasn’t born stronger than anyone. I found my strength through enduring hardship, coming out the other side of it, and using what I had been through to learn and grow from it. No matter what, YOU can be, do, and achieve anything in this life. The only person that will ever be in your way is yourself. We are all truly so amazing and so resilient and more capable than we realize!”

woman who has accepted the fact she can't smile
Courtesy of Tayla Clement

This story was submitted to Love What Matters by Tayla Clement of Auckland, New Zealand.  You can follow her journey on Instagram and her YouTube channel. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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