The real face of courage

Ellen Vollmer and Jonathan Heaver
Ellen Vollmer and Jonathan Heaver

On Saturday, May 9, I met two very remarkable teenagers, Ellen Vollmer, 15, and Jonathan Heaver, 13, (pictured above) at Let’s Face It’s 30th anniversary. What set them apart was not their facial disfigurements because many of those present at the Royal College of Surgeons in London were also facially disfigured. No, it was their extraordinary courage in speaking before a large audience in the imposing setting of the Edward Lumley Hall and talking about living successful lives.

Ellen has taken to dance and gave a wonderful performance for us. Jonathan did likewise with a couple of musical excerpts. For ones so young it was impressive and humbling as they talked about their lives and how they are coming to terms with their physical condition. I only wish I had had that courage back in my teenage years. I didn’t and suffered for it. That was my misfortune, but it’s not theirs and I was so glad for them. As I looked around the room and took in the warmth and support of everyone there for these two young people I knew their lives would be so much better. The empathy was incredibly powerful and so moving.

Christine Piff founded Lets Face It in 1984 and I was privileged to meet her back in the 1990s when she helped a few of us set up a branch in Cork. I was in awe then of her fortitude in dealing with facial cancer and the subsequent removal of an eye and one side of her face. Talking to her was a revelation: she wasn’t filled with self pity or anger, just a quiet determination to get on with her life and help others with facial disfigurement. And what a wonderful network she has created. To Christine we are more than just survivors and have a lot to give. We shouldn’t be ashamed of how we look and should live life to the fullest. How right she is.

Several times over the years Christine had invited me to attend one of her annual garden parties but I had always made excuses. So when, after starting my blog in January, I got in touch again she quickly invited me to this 30th celebration of Lets Face It and this time there was no chance to say no!

Meeting so many people with facial disfigurements in one room was amazingly liberating for we all had this unique ice breaker. As someone who had just come over from Ireland and knew no one other than Christine, it was very emotional even though the atmosphere was hugely welcoming and friendly. I quickly got chatting to everyone, from Lets Face It trustee Barry Cohen to the irrepressible artist Kate Bigland (yet another with facial cancer) and Daniel Jackson, who lost an eye to a tumour two years ago and is now setting up an eye patch business called IGOGGLE on the strength of his experience. Daniel will also feature in an upcoming episode of Embarrassing Bodies, provisionally scheduled for July.

The one person I didn’t meet was Princess Michael of Kent who arrived for lunch and left just after the first panel of speakers. The princess is one of Let’s Face It’s two patrons (comedienne Victoria Wood is the other), but I was as charmed as everyone else by her obvious interest in people, her delight in engaging with those she met, and her sense of humour. My one regret was missing out on a raffle for a signed copy of her book!

I spoke myself for the first time in 19 years before a live audience (radio interviews are not half as intimidating as when you see people sitting before you) and in a short address talked about my life and how I had come to terms with facial disfigurement, how I met my wife and started the blog. I spoke without notes, and for my sins Christine has asked me for a copy of the speech! But my reason for not reading a speech was specifically so I could see those in front of me and not be compelled to keep my eyes on the sheets in my hands. And who knows my story better than myself, so I let the words – and stumbles – flow as they did and knew people would understand.

Another notable point about the day was the attendance of parents or partners to support members. And the professionals who do such wonderful work and provide every support for the facially disfigured. I was also immensely impressed by the very witty presentation by consultant oral and maxillofacial surgeon Michael Wake and his final observation that while he could repair and reconstruct he wasn’t facially disfigured himself. We have to live our lives, and some of us are managing quite well, thanks to Christine and Lets Face It. Long may she and the organisation thrive.

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