My story begins abruptly 38 years ago on a school holiday to Ireland. I was in a group of 13 year olds experiencing our first holiday without our parents. Left alone, as the teachers unpacked, excitement tore through the dormitory until, amongst the screaming and pillow fights, someone noticed I was hardly moving. A virus that lodged behind my ear had been activated and my temperature rose to a frighteningly 104°F. So, my two week confinement began. Mrs McCarthy, my domestic science teacher, had the unenviable task of looking after me for the duration of the holiday.

My first recollection of Bell's Palsy was on the final train journey home. I was still feeling very weak from the virus and, as I sipped a drink, I felt a strange sensation on the left side of my face that I had never experienced before. On arriving home, I again collapsed into bed and, on waking found the left side of my face was not moving. In fact, it was sometime before I could shut my left eye at night, which quite bewildered my younger sisters. The doctor was called and I remember feeling quite disturbed by the helpless look he and my parents had on their faces.

A week or so later, my misbehaving face and I went on a family holiday to Blackpool. Eating was becoming difficult, I had not had time to adjust to the new contortions of my face and I was sensing that other people were noticing or commenting to my parents. This combined with the onset of puberty, meant that the attention was quite devastating and I would become acutely sensitive to that, "What's wrong with your face" look over the years.
It was yet to hit hard.

Back home, I was walking through the park, feeling quite carefree, in my 13 year old way, when a gang of children came up behind me and taunted me about my 'disfigurement'. I ran home and the grief for my loss poured out. I decided there and then that I would never go out again. My mother, not the most sensitive of souls, screamed at me not to be so soft and to get out. I thank her to this day as I can see that I could have become agrophobic. Instead, I learnt to cope.

When I read the stories of how other Bell's Palsy sufferers coped, I asked my husband how I reacted to this unwelcome attention. He seemed surprised and said "I don't know, it never seemed to bother you". I think all BP sufferers have the same defence mechanism. First, there is avoidance, don't look people straight in the face and they won't notice. Secondly, cover your face when laughing and hopefully no-one will see your lopsided smile and finally, never have your photograph taken (why remind people?).

Responding to thoughtless remarks can be difficult. This happened a lot in my teens because at that age there is so much emphasis on appearance, particularly in the swinging sixties! One boy actually followed me up the local High Street on a Saturday night out demanding to know what was wrong with my face, completely ignoring the fact that I did not want to explain AGAIN! Thankfully, people are more accepting as they get older as their values change. There are millions of stories I could tell you, the reader, but my story came full circle a year ago....

I had treatment for BP when I was first diagnosed but the treatment was in its infancy, rather bulky and uncomfortable. It seems archaic now but I had to wear a metal hook that slipped over my ear, travelled down to my bottom lip pulling it up in the most embarrassing manner! As for counselling, such things were unheard of in those days and no-one asked "how do you feel about what has happened to you?". I felt that my basic communication tool had to be reinvented. However, over the years I heard that there was a lady who was doing some research into this condition and I often wondered where she was now as I had this gut feeling that someone did actually want to help. Where in the country could she be? Perhaps she had gone abroad or given up and started a family. Little did I know at that time of Diana's commitment and the wonderful support from her family and colleagues. Noticing a small write up in a magazine about BP, I was astonished to find someone was running a clinic for palsy sufferers just a few miles from where I lived. When I rang Diana that morning, I realised I had found the person I had been looking for all my life!

I am one year on into my treatment and delighted with the results. Even if it had all failed I would have still been happy to think that someone, Diana, had recognised the trauma of this condition on the person and dedicated her life to helping us to recover our naturalness.

Finally, I am pleased that other 13 year olds will not have to wait 38 years for such treatment and that counselling is now available but I would like to say to them I have learned from experience. At the end of day your family and friends love you for what you are and will hardly notice your palsy. My children, John and Michael, just see Mum.

Margaret Bold

p.s. When I had finished my story, I asked my husband to proof read it for any mistakes which he kindly did and then added his own little note:

"At the height of your palsy, when you were 17, your husband thought you were the most beautiful girl he'd ever seen".