Facial Palsy and what it is like to live with facial paralysis

Living with Facial Palsy

There are many websites describing facial palsy in "doctor-speak" but you are always left with the feeling that unless the Doctor actually "suffers" from facial palsy then how do they really know what it is like?  Having had facial palsy since birth, I hope my website will help parents understand how to cope with facial paralysis in children and also that having this won't stop children achieving their dreams. 

Since setting up this website in 2005 things have moved on a little and people are starting to get more support from health professionals, although we still have a long way to go.  Here in the UK a new charity has launched in 2012 which I am part of - Facial Palsy UK.  In 2008, the Facial Paralysis & Bell's Palsy Foundation was set up and they are also doing great work to support those affected by facial palsy.  Before I was involved in the Facial Palsy UK charity I set up the website FacialNervePalsy.com with help from others, to try and answer those questions that no one seemed to know the answer to.  I don't get quite so many emails these days from bewildered parents who have no one else to turn to, and this can only be good news.

March 1969, a facial presentation at birth leading to facial paralysis

Pregnancy is such a magical time and I know from personal experience what it is like to give birth to a child who has a "difference". I don't like to call facial palsy or facial paralysis a birth defect, because who is to say what makes us truly perfect? Don't people often look at conventionally beautiful people and think they are lacking because they are simply too perfect? I always think that a beautiful spirit is far more powerful than beauty on the outside.

I came into this world in the spring of 1969 and I was born with facial palsy. Congenital facial palsy is a term associated with babies born with facial palsy but this really describes those who have it due to an abnormality during development in the womb. As they think mine was due to birth trauma this is a little different, because I would have been undamaged in the womb. I do believe that I am luckier than someone who has become a victim of facial palsy or Bell's palsy in later life, and that is because I have only ever known the face that I was born with, and although sometimes I have my moments, on the whole I am fairly happy with it.

When I was born I was what was known as a "facial presentation" birth and I came out "face first" instead of "head first". Had I been born in today's more modern world, my mother would have had a caesarean and my facial paralysis would maybe never have occurred. The doctors were never quite sure what happened to my face, they said I was the first person in the UK to have this facial paralysis happen without there being a specific reason for it, and possibly in the world. I now know this wasn't the case, it was just extremely rare! Many people suffer from Bell's palsy, or facial palsy after head injury, stroke or for various other reasons, but there was no definite reason for this happening to me. If only we had had the internet back then, I didn't have a clue that I wasn't alone with this unique looking face which only smiled on one side!

Was it only Facial Paralysis or in fact Cerebral Palsy?

My early years were filled with numerous trips to Addenbrookes Hospital in Cambridge, UK, where I had to endure brain scans and various other tests. The doctors did not rule out cerebral palsy until I was about 10 years of age. My mother was so desperate to prove that I didn't have cerebral palsy that she pushed me to the limits developmentally, she wasn't going to let me be different to any other child the same age.

Although the doctors eventually decided that I didn't have "cerebral palsy", I never really got any answers as to why this had happened. They decided that a nerve behind my ear must have been damaged when I came out "face first". I now know this is called cranial nerve damage, i.e. facial paralysis.

So what is it about me that is so different? Well there are pros and cons of my situation so I will list them here.

The downside to my Facial Palsy

  • I can only shut one eye 
  • I can't show my teeth when I smile 
  • My smile is lop-sided 
  • I get a sore eye 
  • As I get older one side of my face is getting more wrinkled than the other 
  • It makes me different 

The upside to my Facial Paralysis

  • I can read out of my paralysed eye in strong sunlight because it won't squint or close 
  • I don't need to worry about food stuck in my teeth 
  • I don't need to worry about what my teeth look like 
  • I can wiggle one eyebrow (I don't tell people it's because I can't actually wiggle the other!) 
  • It makes me different 
  • I have made some wonderful friends through having facial palsy