Research is definitely a crucial part of a better future but let’s not forget the present

Two big stories breaking in the media today are attracting my attention – a nice change from yesterday’s need to challenge another tiresome TV series title.

First, overnight news comes in of another incredible face transplant operation, this time on a man in the States, Richard Lee Norris, who had been injured 15 years ago in a shooting accident. The photographs released show the brilliance of today’s surgeons but they also remind me of an Italian man I was in hospital with back in the 70s who had to endure many brilliant conventional operations to repair a similar injury.

And almost simultaneously, news of a new major research programme into the causes and impact of cleft lip and palate. To quote the press release of The Cleft Collective: “cleft is one of the most common congenital abnormalities in the world, affecting 1,200 children born in the UK every year – but little is known about its causes, with opinion divided on best treatments.

So, in case anyone is in any doubt of my position (and Changing Faces’), let me say it again: medical science has a huge part to play in making a better future for people whose faces look unusual for any reason. Gaining the funding to do this, as The Healing Foundation and the Universities concerned have done for the cleft programme, is vital – congratulations and thanks to them…

Just as important for the future too is that conventional well-proven surgical and medical interventions are available and that includes skin camouflage which Changing Faces is now offering directly or in NHS clinics.

All of these options should be available to patients wherever they live – which is sadly certainly not the case in many many parts of the world. Much more advocacy is needed…

But there is something vital missing in this recipe because even if the transplantation research is successful, it will only be for a very few patients worldwide each year. Thousands, millions, will continue to have to live with their condition – their disfigurement – their birthmark, facial paralysis, their asymmetry, for the rest of their lives. And this is difficult.

All of them should have access to what could be described as ‘disfigurement life-skills training’ – a process by which patients (and their families) are helped to adjust to looking unusual in a world that prizes good looks so much and stigmatises not-such-good looks.

What has shocked me about Richard Norris’s story is the revelation that he spent 15 years living as a recluse. This should never happen to anyone. Sadly we hear every week that it does to far too many people… with a Bell’s Palsy or after cancer surgery or after burns or….

Frustratingly, Mr Norris and many others have not had access to the sort of empowerment that Changing Faces specialises in and advocates for – and is now available in some places. In particular, we know how crucial it is to people of all ages who have unusual looks to develop effective communication skills to manage all sorts of everyday social interactions. Going shopping, using public transport, meeting strangers, being in the playground – all these and many other everyday occurrences which most people take for granted can become nightmare scenarios. Here’s a pointer to the sort of help I have in mind.

Richard Norris’s remarkable surgery will make him less conspicuous in his everyday moments – let’s hope he finds the confidence to thrive in them too in the future.

Advertisements

Wonder what it’s like?

RJ Palacio’s remarkable book called “Wonder” is published in its children’s version in Britain today and it should be a must-read for all children from about 8 upwards… and probably for all adults from 109 downwards!

I am not going to give away any of the plot – I try terribly hard with all books today not to read the blurb on the back or front covers or the inside pages because I find it ruins my enjoyment of the suspense in reading the text – but…

What I can say is that if (as I think you should) you are wondering what it would be like to go through childhood with an unusual-looking face, you would be hard pressed to find a better source of information and insight…

Not only does the author capture the mood and self-talk of the girls and boys in same class as the child in question but, much more sagely, she unlocks the agony, the loneliness and, not to put too fine a point on it, the terror that he experiences as he navigates his way through a school year.

His friends and classmates are brilliantly portrayed as they struggle with the usual – well, usual as in ‘par for the course’ if you have an unusual face – the usual mix of occasionally good but mostly bad behaviours. I mean ‘struggle’ too because the pressure of peers to not like and to ridicule is hard to resist.

You really feel as if you are in the boy’s shoes and you grow with him as he finds his character and develops his insights – like his 6th sense that someone he meets is doing the ‘look away thing’, a sense that any adult with a disfigurement will have in spades. Gradually, despite the terrorising, he builds his assertiveness, his inner strength, his banter and his excitement with life.

So wonder no more. Get it.

“Wonder” by RJ Palacio published by Random House.

And send me your reviews, please…