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Living with Goldenhar Syndrome: I learned to advocate for myself

Unique. A word used to describe me, as far back as I can remember. I hated the word. With apassion. All I wanted to be was “normal”. I would look at the other kids with their “normal”faces, their cluelessness at what a hospital was or how disgusting medication can be and I wouldjust close my eyes and wish for a superpower to make me like one of them.I’m Emma. I’m an Irish gal and I’m 31 years old. I am also the only person born with both jawsmissing. There was no indication I would be different, so when I was born, naturally my parentswere surprised and trying to work out what was wrong with me as I couldn’t breathe. When Iwas only a few hours old, I had a tracheostomy inserted to help me breathe and then I had scanafter scan to determine what was exactly wrong.

I essentially became a guinea pig, a Rubix cube, pandora's box … you name it….- a mystery forthe doctors to unravel and every time they thought they hit the nail on the head, the nail justsprung back out and we were back to square 1.My first major surgery was when I was 19 months old, I had a rib graft to place two ribs wheremy jaws should be. It was televised and a big sensation. I don’t remember though, I just hearthese stories from my Mum who gave up her entire career to look after me. I needed 24.7 care. I made no sound, so you couldn’t tell if I was choking unless looking at me, with a tracheostomy Ineeded suctioning regularly and I also took 8 plus hours to eat one meal. It was a full-time joband when I see my Mum today, I see a superhero who despite spending over a decade training tobe a Barrister (senior lawyer), gave it all up in a second to care for me. My Dad, a Doctor, wasalso in the middle of his residency and trying to do all the hours that were required while helpingmy Mum at home. The point is, growing up as a baby until school, I was pretty muchhousebound.Once I went to school, I expected everyone to be as sunny as I felt. I had only experiencedsunshine and love. However, the reality was that the real world can be cruel, especially to thosewho look different.

Throughout my childhood, I had surgery after surgery to try and build the ribgraft into a jaw, make my face longer, etc. I’ve lost count of how many surgeries I had. Theschool would finish for the year and my summer was spent having surgeries and recovering andthen back to school. It was this same routine for my entire childhood. I had my tracheostomyremoved when I was 12 years old - yay!When I hit high school, that’s when the real mental pain of looking different kicked in. Iremember turning 13 years old and being vividly aware of how toxic teen girls can be from thatage. I was severely bullied. Every single day was mental and emotional torture. I couldn’t focus,my grades slipped and I became severely depressed and considered ending it all. Luckily I wasseeing the hospital clinical psychologist to help me make important decisions regardingsurgeries. I then began to open up about the bullying to her and she went into the school to askwhat I was doing to deserve the emotional abuse at school and then when I went home onlinewith constant hate messages. The school couldn’t come up with anything because the fact wasthat I had done nothing. My only crime was looking different.I remember when I turned 16, I was told by surgeons that I needed to have the rib grafts removedas they were no longer working and I needed artificial TMJs. That surgery was brutal, they tookthe rib out, and the joints didn't fit so I was left on a ventilator for 10 days while new ones weremade and shipped over. By the time the surgery was finished and I was back to school, I had halfa shaved head, was super swollen, and just felt awful about the way I looked.

The fact that I looked different gave the bullies the chance to assume that I was weak andvulnerable and unfortunately, because all kids at that age want to fit in, I was an easy target andtherefore they managed to destroy me. I became a shell of a person and moved schools hopingthat would help and it did slightly. I honestly had no hope for the future. I didn’t think I wouldachieve anything. However, the universe had another plan for me. I achieved the grades I neededto get into my dream University BA/ undergrad program and I spent the next four years growingup (one of the years I studied abroad in Upstate New York). My BA was in ‘American Historyand Politics’. I am fascinated with American history, culture, and politics - how much haschanged since the 1700’s. I had no idea what I would do for a job after but that didn’t matterbecause at the time I was just trying to find my footing in the world.I did have to extend my degree by a year, as I obtained an infection on my left artificial TMJwhich needed to be taken out, leaving the space empty for 6 months and then a new joint putback in. Unfortunately, I developed a facial palsy on the left side as a result of this surgery andthat put a further dent into my confidence. Everything else was a success.I still struggled with ‘looking different’ as by the time we reach university, we start to naturallydate and socialize. I struggled. Dating for me was like trying to learn PhD level physics (nevergoing to happen) and socializing was hard as people saw my face first before giving mypersonality a chance.I graduated and worked in retail for a year to save up before moving to Vancouver, Canada.Before moving, I had a major life-changing surgery. I hated the way I looked and begged mysurgeon to do something, so he finally agreed to replace the artificial TMJs with a different shapeand try and change my face shape. My parents were terrified. We had huge arguments over itbecause of the risks. But I had a gut feeling it would work. And I was right. This surgery waslike a gift in that it gave me confidence I never had before. It pushed me to follow on with myplan to move abroad and start fresh.I didn’t have a plan about Vancouver - I just knew I wanted to take the chance with this potentialjob I was offered by someone over there. When I first moved there, I actually started to work onTV sets of some very popular shows such as Supernatural, Flash, Arrow, DC Legends, etc. Icouldn’t believe it, I was actually on the sets of these major shows - Supernatural I had beenwatching since I could remember - and because I was doing such a good job - I kept gettingasked back. That to me was mind-blowing and helped boost my confidence. However, on one ofthe shows, I experienced bullying by a senior member - my face was targeted. I tried to ignore itfor six months and eventually, I reported it.

The next day I was fired. Ironically, that show cameunder investigation for misconduct and was canceled promptly after the investigation concluded.Can I say, Karma?After working on all the shows, I went back to the original plan of working with this particularperson. I very quickly realized I had entered a very toxic and emotionally abusive work situationwhere I wasn’t safe. My escape plan? Apply to do a Masters back home in Ireland and run. Inever thought I would be accepted into one of the top universities, best programs, and justgenerally do an MA. The girl who was called stupid throughout High School had of courseabsorbed some of this inner dialogue. I remember getting the acceptance email and I justcouldn’t believe it. I was in! I very quickly packed my bags and promptly left Canada to gohome.My Master’s was the best educational experience of my life. I proved to my inner dialogue thatI AM SMART. My Master’s was ‘American Studies’ aka politics, history, culture and literature.My final research MA thesis was called ‘The Crime of Being Black: Mass Incarceration from1980 to current day’. I loved every moment, soaking in this challenge and knowing I could do it.I graduated top of my class. Something my 13-year-old self never would have believed if she hadbeen told this would happen 12 years later.When I graduated with my MA, I was twiddling my thumbs wondering what next? Well, therewas that chapter called COVID. The whole world shut down. No one was hiring and we were allstuck. It gave me a chance to breathe though. I had time to think about what I wanted. Myanswer? Adventure.September 2020 rolled around, and the world has just opened up and that allowed me to hop on aplane and move to Cairo, Egypt. I know that was a super random choice. Backstory - after Ifinished my MA in 2019 I went there on a trip and I loved it so much. I made so many friends.One of which worked for one of the top marketing agencies in North Africa. Marketing had beenthe area I had worked in on the side for the last few years. My friend convinced me to comework with them. I applied, and after giving a presentation - I was accepted. Tickets booked,parents jaws on the floor when I told them, and my excitement for adventure in such a differentplace was high.

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Living in Cairo, was a chaotic beautiful adventure. I loved my job - one day Iwould be doing photoshoots by the Great Pyramids and the next day I would be in some oasiscapturing Egyptian local culture. Or another day, working on a massive Ramadan TV campaign.Each day was different, never a dull moment. Film festivals, influencer trips, clients in differentareas - I was learning so many skills. I grew up over there. I became the independent adult Ialways wanted to be. I learned to advocate for myself and I learned this new superpower - givingZERO CARES about what anyone thought. I found myself to be respected because of this newconfidence and it showed me that the ‘fake it till you make it’ phrase is correct.Cairo was also filled with meeting so many amazing lifelong friends. I found it to be healing inthat sense too, I started to learn boundaries. I started dating. I realized that I am attractive, and Iwon’t be alone forever like I assumed when I was 13. After nearly two life-changing years, Imoved home to Dublin to pursue a job in the Irish market. Everything was going great untilJanuary 2023 when I found out that I had an infection on my right artificial TMJ. My originalsurgeon in Glasgow was now living abroad and no one in Ireland was trained specially for thissurgery, as there is only a small number worldwide skilled in this. That meant finding a newsurgeon in the UK and there were only 3. No one wanted me at first because of my complicatedcase, however, I finally was taken on. December 5th, 2023 after taking very strong dailyantibiotics 4x a day, I finally had the joint removed. I now have to wait a period before the newjoint is inserted. I am scared for sure. Every surgery I have now is riskier because of the scartissue and the fact I have a facial palsy on the left side that could get worse or I could get one onthe right side. But at this point I just want this nightmare to be over. I want to get on with my life.You’d also be pleased to know I haven’t let this stop my dating life - still dating - still puttingmyself out there with the aura of zero care about others' opinions.Of course, I still struggle every day with mental health. I go to weekly therapy and I amdetermined to heal so I don’t pass on any generational trauma.

While I am technically off work, I’m focussing on freelance social media, learning Italian, andtaking a Public Relations diploma course as I think I want to enter PR instead of my usual title‘Senior Social Media Account Manager’. I’m also focussing a lot on my online presence - feelfree to follow me!Instagram: Emma19CassidyTik Tok: LifeChatsWithEmmaWhen I’m not planning my next career or adventure step, I am often found socializing with myfriends. I now have this amazing inner circle that I love dearly. I also love to play tennis andwatch TV shows. Most importantly, I love spending time with my dog (Nellie) and of course myparents… I am an only child but we count Nellie as one so.In conclusion, at 31 years old with all the traveling, adventures, mistakes, trauma, and struggles Ihave been through - I still haven’t found the secret to life. But I do know this. Life gets better nomatter what. You WILL find your friends who love you for you. The darkness WILL pass. YouDESERVE to live and you SHOULD take up space in the room. You’re just as worthy as anyother “normal” person out there.

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Children's Craniofacial Association
Supporting and inspiring individuals and families affected by facial differences since 1989.
15851 Dallas Pkwy. Ste. 245, Addison, TX 75001
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