I was born with congenital facial nerve palsy due to the absent development of the seventh cranial nerve on the left side of my face. As soon as I was born, my mum realised that my left eye would not close, and later on, a midwife noticed the asymmetry on my face. After several visits and appointments to various hospitals, I was diagnosed with congenital facial nerve palsy and a lazy eye at around nine months old.
During the first years of my life, I had a lot of physiotherapy to help with the functionality of the left side of my face. I also had acupuncture therapy; however, my mum mentions that it didn’t help as much as she hoped, but there was obviously no harm in trying. I had a stage one facial nerve graft surgery in 2005 and the second stage in 2006. Various nerves were taken from my body, which has left me with visible scars on each side of my neck, under my arm, and on the side of my left ankle. Nethertheless, both surgeries were successful in helping me regain more functionality on the left side of my face.
I don’t have a lot of vivid memories from my surgeries. Looking back now, though, I remember an intense feeling of confusion and uncertainty; I didn’t know anyone who was my age, having these kinds of surgeries or having to stay in the hospital for a long time.
Until a few years ago, I can say that I never really owned my facial palsy. Any time someone asked me what was “wrong” with my face, I could never find the right words to explain. Especially as a child, I now realise that I felt very embarrassed and isolated due to having such a rare condition.
I remember teachers at school not really knowing what facial palsy was, or sometimes doctors wouldn’t always be aware that you could be born with it. When someone would ask me to smile for a picture, I would always panic. As a child, I can also remember someone asking me why I could only raise one eyebrow and I burst into tears at the thought of having to explain.
I feel that a lot of these negative feelings were caused by the intense bullying that I experienced during my primary school years. I would say that those years were very distressing and intense for me. I was regularly called names like a “monster,” “alien,” and “wonky-eyed.” A comment that I remember overhearing once was that my school photo would come out “ugly” because my scars under my neck would “ruin” it. Unfortunately, a lot of this bullying was overlooked and dismissed by the school system.
When I was in secondary school, I was lucky in that I didn’t experience any major bullying. However, due to my previous experiences with bullying, my confidence was very ruined, and I suffered from a lot of low self-esteem issues. Thinking back now, I missed out on so many opportunities when it came to events, parties, socialising, and even boys! When I started college and went off to uni, the same cycle continued; I was not able to make the most of my time.
Moving on, I don’t want to keep all of this writing negative! I’m 24 now, and in the past couple of years, I have learnt to accept myself as I am, put myself out there more, and acknowledge that my facial palsy has shaped me into the person that I am today. I work in education now and have always felt that I want to create change and a positive difference in the world.
On reflection, there are a few points I now realise that could potentially help someone else who is struggling:
* Bullying doesn’t mean that there is something wrong with you – yes, you may have a visible condition, but it is a part of what makes you unique; people’s negative words about it are only a reflection of themselves.
* I know it’s so hard to not be self-conscious sometimes; but, your condition and any scars that you have due to surgeries all tell a positive story. They all signify how strong you are and the resilience in your journey with facial palsy.
*I still feel like facial palsy is not widely known about today. Maybe, that’s why some people with the condition sometimes struggle to be open about it. However, I’ve come to realise that representation is so important – the more that we speak up where possible, it will be so much easier for the younger generations, or those who developed the condition later on in life to relate and not feel alone.
As a child, writing was always a form of escape for me; however, I never thought I would write a piece based on my own experiences for it to be read by others. I hope that there is something in this piece of writing that brings a positive light to someone and helps them in their journey.
Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.