40 years on…

Against the backdrop of the ghastly catastrophe unfolding in Japan, I have been marking this week a huge date in my calendar – the moment 40 years ago when I understood the much tinier but nevertheless devastating catastrophe which had befallen me.

On the Ides of March 1971 (15.3.71), I looked in a mirror for the first time after my accident 3 months previously – and from knowing myself as a good-looking 18-year-old guy with prospects, I came face-to-face with a disaster area which, it was very hard not to think, could only hold a very tarnished and unhappy self.

The photo tells only a part of the story because (a) it is black-and-white, and (b) it was taken two months after my day of reckoning when my face was still bloody scabs, vivid redness, and ghastly distortion.

Look carefully and you may see the tell-tale signs of doubt, grief and pessimism – I felt all of these as I scanned across that face and I just could not imagine how I could ever get my life back – any kind of life, frankly…

Five years of brilliant 1970s surgery created the face I now wear with pride but it was what went on outside hospital as I struggled to become a fully-included citizen and not an outsider, a horror-movie villain nor a just a lifelong patient, that really counted for me

I have also been touched this week, as I suspect many have been, by Katie Piper’s recovery story from her acid attack – and this will probably grow as her TV series rolls out over the next few weeks. She is admirably showing others with burns, perhaps less severe than hers – and indeed those with other facial conditions – that a good future can happen.

And she’s also doing what Simon Weston’s TV story did so well in the 1980s – raising public consciousness of what it’s like to have a facial disfigurement. I salute her.

My role models in the 70s were Battle of Britain fighter pilots, the ‘Guinea Pigs’ of McIndoe’s making. How I would have loved a Katie figure!

I wish her well too with her fund-raising for the new rehabilitation clinic modelled on the one she attended in France with full-on hydrotherapy, scar massaging and much else plus, of course, an atmosphere of acceptance and restoration for the burns survivors who attend it. And I look forward to working out how Changing Faces can support and work with her and her team.

What lessons are there from all this, 40 years on?

First, I discovered – and Katie’s quiet praise for her psychologist confirms she has too – that adjusting to living with a facial or body disfigurement of any sort, whether from birth, trauma, cancer, paralysis or skin condition requires a whole raft of support and help. I had no psychologist and I hugely admire Katie’s but there are very few in NHS settings supporting with patients with disfigurements outside the burn care and cleft lip and palate services.

So the psycho-social help and empowerment which Changing Faces provides and advocates for to be routinely provided in the NHS is just as important – some would say, even more important than – the vital reconstructive surgery and physical therapies people need.

Much of my work over the last 19 years with Changing Faces has been dedicated to creating a psycho-social package that is as effective as it possibly can be.

There is much more on our website about what we offer but in a nutshell, that package enables people who are unhappy with the way they look to find sensitive, constructive, practical help.

So if they feel as if they have no control over their condition and its treatment, we help them to ask the right questions and get control.

If they cannot see any future, no chance of a relationship or a good job, we help them challenge those beliefs and meet others who have found happiness and success – it is possible.

If they want to express and resolve their feelings of sadness, grief, loss of identity and sexuality, we give them that chance.

If they want to meet others who are going through similar challenges, we arrange workshops and events…

And crucially, if they are tired of the unwanted attention or self-conscious about their looks, we enable them to develop new social skills to deal with that and meet new friends and much more!

Our professional team here at Changing Faces is helping hundreds of people and families every year do this adjusting successfully and we need to make it much more available in the future.

Secondly, more personally, I believe in hope… or perhaps as an old guru of mine, Harry Williams named his book back in 1972 in ‘true resurrection’. Out of the deepest adversity with all its losses and grief can emerge, very gently and uncertainly like the little spring shoots and flowers emerging in the parks and my garden, tiny shoots of new life.

That’s what I found, nurtured by my family, the lovely hospital staff who cared for me and my friends – and I offer a little prayer of hope for all those whose lives appear wrecked by this week’s events…

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5 thoughts on “40 years on…

  1. Hi James,

    I’ve been working with both The Katie Piper Foundation, and Changing Faces over the last 9 months, and I find the work they do absolutely inspiring. It has helped me understand a lot more about disfigurement, and I really think many people – disfigured or otherwise could grow a lot from a support network (such as those charities like these, that provide assistance for people with disfigurements).

    Much cosmetic surgery seems to stem from a deep rooted unhappiness in physical appearance, and I find that in today’s society we are so image obsessed, and materialistic – that we’ve forgotten many of the true values of personal contact, open discussion and as a consequence, have lost confidence in who we are. Too much is based on first glimpse, and not enough on the quality, personality and integrity behind the cover.

    Sadly I don’t know an easy way to change this, and I think as a nation we are slowly improving – with charities like these raising awareness by telling your stories. But longer term, this is definitely something we have to work hard to change.

    Thanks for sharing your story. Without proud people like you, holding their head up high and opening up their stories up to the media, I don’t think society could have even started to change.

    Claire

  2. Amazing story, James! I was born with Moebius Syndrome, and i’ve known the challenges of living with a ‘different’ face. Amidst it all, i have kept a positive outlook on life and it’s many gifts. Kudos to you for your bravery and activism in helping people deal with adversity. What doesn’t kill us, makes us stronger. And i believe i am a much stronger and compassionate person for being born ‘different.’ ❤

  3. Lovely words James, and I can vouch for what a marvellous, beautiful family you have who love you very much. As soon as I got to know you you dont see your scars one little bit but the man you are… much love Jo x

  4. Pingback: Why face transplant research is important – and, more power to Oscar! « James Partridge @ Changing Faces

  5. As always, I am inspired and moved by your message, James. Thank you for taking the time and energy to share your thoughts. I know I speak for a legion of young people here at Stanford and in northern California when I say that your words have the power to move mountains. my vbw, Jill

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