Last Saturday I happened to be in London and grabbed a few hours with some remarkable people at a social event organised by the Katie Piper Foundation.
I must admit knowing Katie Piper would be present for 45 minutes was a compelling reason to go because I am such a huge admirer of hers. She has said some lovely things about my blog, sent me a signed copy of one of her books, and I am in awe of how she has rebuilt her life following a shocking acid attack some years ago.
Whatever slight concern I had about not knowing anyone were lifted as soon as I was greeted by Foundation staff member Ezinna Rospigliosi. Straight away I spotted the lovely Kelly Jackson across the room. I knew her through Twitter and her very positive blog which she started following a serious car crash. Neither of us had expected the other to be there so it was wonderful to hug each other like old friends.
Not everyone present had a facial disfigurement – some were accompanied by a partner or mum – but pretty quickly I got chatting to several; and even though they were strangers when I entered the cafe, they were friends within minutes. That’s the bond you have with people who understand what you have been through, an amazing empathy.
And yes, I did get to talk to Katie for a few minutes. Heck, I even got a lovely hug too! She is as beautiful in person as she comes across in the pages of her books Beautiful and Beautiful Ever After.
I grew up thinking I was unique – uniquely different, that is. Burned in a domestic accident at the age of 27 months, I spent several years in hospital before my father, afraid that I might become institutionalised, or end up in a home for damaged children, decided to take me out.
Despite a succession of operations through the years it might surprise I never met anyone who looked remotely like me. In the streets of my city I came across no one with a facial disfigurement so that over time I began to believe I was cursed, damned by fate to live with this face which I hated. Save for my parents, I had no one to talk to openly about the accident; none to share my experience of the lengthening shadows of loneliness, fear and growing self-pity that clouded my life.
I had begun to drift away from the few friends I had and slowly detached myself from everything except a job I loved in a newspaper. Offensive comments, hostile stares, occasional physical attacks didn’t help. I went to the cinema alone at night because I didn’t want people to see me, and found excuses to avoid invitations to parties, dances or other social occasions. I was uncomfortable in crowds and, ridiculously, annoyed if people didn’t notice my face! Yes, I wanted people to feel sorry for me.
Most of all I was lonely, desperately lonely. I couldn’t see a future for myself. I was awkward in the company of girls, which didn’t help. I was prone to silences or making silly comments. I lived a double life – seemingly content at work but once I got home I tended to block out the outside world. I was too afraid to face people.
I must have been in my early twenties when I came across an article in one of my sister’s magazines about a girl who suffered an epileptic fit and fell face first into a fire. It was an amazing moment. I looked at her photo first and thought, wow, she looks a lot worse than me. Then I read the article. I recognised so much of myself in those words: her anger, regret for a lost face, self-pity, her quest for love. The biggest realisation was that I was no longer alone.
I was in my early thirties before I met someone who was facially disfigured. That first meeting was simply amazing. Here at last was someone who knew something of what I had been through. I was married at that stage but still not comfortable with myself. I was a reluctant socialiser, but my wife is very good at forcing me do things I don’t want to do! There was still this reserve within me because I knew people still stared at me. My new friend, who had been severely burned in an industrial accident a few years earlier, was soon sharing his experiences. It was such a relief to find someone who understood my fears and concerns.
I never thought I would marry and have children. Who would want me? What woman would take a chance on this guy with a scarred face? And yet Trish did. She took a fragile very scared guy and gave me the confidence to believe in myself. I’m hugely grateful to her.
I began a blog almost two years ago and wrote about my face. The reaction was hugely encouraging. So many friends and colleagues had never known my story and were extremely encouraging. My newspaper ran the piece and I did a few radio interviews. I also decided to tell my story in more detail via the blog. The posts are sometimes about incidents in my life; the horror of being in hospital as a young boy in a city far from my family. I write about things everyone with facial disfigurement go through, such as loneliness, the importance of being positive, of not wallowing in self-pity, etc. I have gone through Hell and back which is why I don’t want anyone to make the same mistakes I did.
I’m not ashamed to say that in my darkest days I cried often. Despair was my constant companion. I realise now that I suffered from depression. But there came a day when I realised that I had to do something, ANYTHING, to turn my life around. And I did. It wasn’t easy and it didn’t happen overnight.
Through the blog, newspaper articles and radio I have encountered many people with facial disfigurement. Some have been burned as children, others as adults. Others were born with their facial difference, or lost part of their face through cancer. My life has been enriched by knowing them. I only wish that I had known some of them when I was younger because I might not have made the same mistakes. While I can’t turn the clock back I can reach out to others.
Today there are wonderful organisations like the Katie Piper Foundation, Changing Faces and Let’s Face It in Britain who provide fantastic support to those who are facially different. Burn survivors like Katie Piper and Turia Pitt (Australia) are terrific role models for so many. It’s incredible that Katie, for example, presents TV series, something that would have unthinkable a decade ago. Her courage and refusal to be limited by her injuries are truly remarkable. Thanks to social media, especially Facebook and Twitter, many others are going public and engaging in a more open way. You are not alone. That is so important.
For me it has been a tough and sometimes painful path to heal myself. I have learned a lot from meeting others with facial disfigurement and from reading their stories in magazines, blogs or books. To know I am not alone is wonderfully empowering, and would have been of enormous benefit when I was a teenager.
Which is why I so warmly welcome the Katie Piper Foundation’s new online peer forum where people can tell their stories and share their experiences. KPF does amazing work offering advice on scar management and other services, but many people cannot always access their services for geographical reasons or because they lack the confidence to attend KPF social events. Now they have a readily accessible platform.
I encourage everyone to donate to the KPF online crowdfunder. By doing so you are helping them towards ensuring that scars do not limit a person’s function, social inclusion or sense of well-being. It’s a goal I share so please support them.
The link is here or you can click the donation button at the top right hand corner of this blog.