I was born in 2004, a ‘normal’ baby, there were no issues in pregnancy, and no obvious signs through the early years in my life.
When I was three, my Mum started to notice that I was ‘ignoring’ people and not listening, so she raised her concerns with the hospital and I had a hearing test, originally I passed this, but then failed the test when I had it again 6 months later, so I officially had the hearing loss diagnosis at 3 ½, so since then I have worn two hearing aids and they have changed my life.
Also when I was three, my Mum noticed that my face/lips were starting to drop so she took me to the Paediatrician and they determined that I had Facial Paralysis in one side of my mouth. So when I smiled, I could only smile on one side. Because I was at an age where I had friends at school, I wasn’t massively affected at this time because my friends understood that I was still myself, just with a visual difference, however, I was more insecure about meeting new people, whether this was within the school at playtime or in the community. The Doctors decided that my Facial Paralysis and Hearing Loss were two separate things.
As the years progressed, the other side started to drop as well, so I wasn’t able to smile at all. This is when I became more insecure with my smile because people would often tell me to ‘cheer up’ or ask why I was sad. I didn’t have the confidence to explain that I had Facial Paralysis and instead I would just keep the feelings inside until they got too much. I didn’t like to have photos taken because even if my family and friends know my condition, the people they are sharing it with, don’t.
It wasn’t until 2014, when I was 10, that I got the official diagnosis of Facioscapulohumeral Muscular Dystrophy (FSHD). This was a relief to both myself and my family, because it meant that we could gain an understanding as to why I couldn’t smile. We were also told that this is why I am deaf. This is also when my mobility started to deteriorate, I was still able to walk independently, but I could no longer run. Because of this, during PE lessons, rather than playing sports with my friends, I would be stuck inside the class doing physio exercises, and I resented doing this because I wanted to be able to play football or do whatever my class were doing.
In 2015, I started a Mainstream Secondary School in which there was not a variety of physical disabilities, and I was the only person there with Facial Paralysis. I found the change hard, as I had gone from the same class for 6 years, who all knew me and my disability, to 250 children in my year. No one from my previous school came with me so I was completely on my own.
After about 3 days, the size of the school was becoming too much for me, so I started to use a manual wheelchair to get around the school, which I hated because it took away all of my independence and I was constantly late to class which I hated.
In 2018, I was very fortunate to be gifted an electric wheelchair by a charity, this was the best thing to ever happen because I had some of my independence back, I could meet with friends in the canteen when I wanted, go to the toilet when I wanted, having control of these basic rights felt like freedom to me.
When COVID-19 came about, and everyone had to stay at home and wear masks, I almost had a bit of relief, because I wouldn’t have to worry about people making comments about me being sad or frightened, I was just as normal as everyone else.
This year, I had to update my passport photo and it got me thinking about the passport rules. You are not allowed to ‘smile’ in passport photos, but for me, I can smile in it, because no one would be able to tell.
As I am generally quite a happy person, I have noticed that when speaking to new people, I speak both loud and laugh a lot, I do this because I am compensating for not being able to smile, so if I laugh, they know I am happy, I never realised this till recently and I think its eye-opening that I am potentially and subconsciously, being insecure about this so I feel the need to show my emotions in another way.
Now I am 19 years old, I have the confidence to answer questions, whether this is about my facial paralysis, hearing loss or mobility. I am going to University in September 2024 to study Criminology with Psychology which is something that I have a huge interest in.
I also passed my driving test in December 2023, this was something that was a long time coming, but with adaptations to the car, I did it, now I can be independent and not rely on someone to transport me.
I do not let my disability stop me doing what I want to do. I have been indoor skydiving, swimming in the Tenerife sea, on rollercoasters and more.
One of my main passions is spreading awareness of disabilities and making sure people are not being discriminated against because of their disability. I still get the occasional comment, but I have gotten to a point where I do not take it personally, because I know the person saying it is not educated and doesn’t know any better.
Although I have been through a lot both physically and emotionally, it has shaped me into the person I am today.
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.