Being a writer, you’d think I’d be able to find the words to scribble down about my own experiences with facial palsy quite easily, right? Wrong.
One thing I hate most is talking about myself. I write fictional characters because it helps me to deal with people better, so I don’t have to think about how normal real people are or how normal I think they are.
Creating those characters is kind of an escape for me from my own reality. I was going to say they don’t talk back to me but really they do in a sense! However, I have the ability to make those characters have feelings, caring natures of sorts, and empathy. I trust in those characters to be who I need them to be. Good or bad.
Though there are the few real people in life that lack feelings for others, there are also people out there that are genuine, kind, caring, and really don’t mind what another person looks likes. It has taken me a long time to realise that having facial palsy doesn’t define who I am as a person and I shouldn’t let it take control of every aspect of my life. Those that know me well and care for me love my smile and my quirkiness regardless. What anyone else thinks about me doesn’t matter because they don’t really know me, so their opinion isn’t important.
I was born with facial palsy in 1977. The doctors told my mum that it should improve over time, but it never did on its own. There were lots of hospital appointments to attend and eventually when I was around ten years old, I had an operation where they cut my head open above my ear and pulled the muscle up to try to make my mouth/cheek look more symmetrical as the facial palsy side didn’t move at all. After months of recovery and being home schooled, along with regular visits to hospital, suddenly I had a small amount of movement. Granted, it moved on its own sometimes, but for the first time I could feel something and I could smile a little.
Yet it didn’t matter, because my friends at school, (or who I thought were my friends), had already planted the seed in my head. The name calling had already begun from being a small girl of about five years old and continued into my teenage years and adulthood.
Because of things people said to me, I covered up my face with my hands, my coat, or whatever I could use to hide behind. Whenever I smiled or laughed, I taught myself not to laugh or smile with my mouth open because it always looked worse to me. One side would gape, and the other side—where the muscles were much tighter even with slight movement—I hid because of the awful comments I would get.
I get dry eye because my eye doesn’t close properly, which can get sore. It waters a lot, especially in cold weather or if I get ill. I used to get drops for it when I was younger, but I haven’t had those for years now. My mum used to put an eye patch over it to try to help me have more closure and possibly a better night’s sleep.
I find now I’m older that my face looks worse if I’m tired or after I’ve had a glass of wine.
I disliked mirrors as a child and I still do now, although I can tolerate them more nowadays. I really don’t like photos being taken of myself because the facial palsy shows up more in them than it does in the mirror. I learned to turn my head to a certain angle to try to hide that side. It works sometimes but you can’t get away from a video.
It wasn’t until about five or six years ago, when my mum had sent me an article she had found in the newspaper about a lady called Karen from the Facial Palsy UK website, that I found out there are lots of other people out there with the same thing as me.
Even though mum was very supportive of me and told me I was beautiful, I never believed her, and I spent years alone in my own thoughts staring into mirrors wondering why I had it. I used to push my eyelid shut and push my mouth up to see what it would be like to be ‘normal’.
As I grew older, the hospital visits stopped. There was nothing that could be done. I believed I had to live with it.
Until Karen. She put me in touch with the right people as I’d given up hope of ever getting any surgery or any support.
I went to see my GP and after she fought for me for almost a year, finally I got an appointment to see a surgeon in Edinburgh and my life started to change. I have had an eyebrow lift as the facial palsy side dropped over time. He also opened up my nostril so I could breathe a little easier, and I also have a gold weight in my right eyelid. He put Botox injections on the facial palsy side to make my face look more symmetrical.
I still have dry eye and will speak to my GP about that. Also, I still use a straw to drink with, even hot drinks because it still dribbles down my face sometimes and I tend to use my good side with it.
I still have bad days, but the good ones outweigh the bad ones.
I have an amazing partner and four beautiful children who brighten up my world every single day.
And of course I have my fictional friends in a romantic setting who keep me company when I’m not busy with the kids, letting me escape from life for a little while creating a different world.
I’m still learning to own my unique smile, yet every day becomes a little easier.
Frey Le Karr
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.
Last reviewed: 28-02-2019 || Next review due: 28-02-2021