Monday, 9 November 2009

Cutting Edge: Katie: My Beautiful Face

I promise this blog won’t always be me commenting on television programmes (or so lengthy!) but I’m sure many of you will have seen “Cutting Edge, Katie: My Beautiful Face”. Katie Piper was left scarred in 2008 after sulphuric acid was thrown in her face, it was a vicious premeditated act arranged by her ex boyfriend changing her appearance and her life forever. She has since endured countless reconstructive operations, suffered the agony of scar dressing management and worn a plastic pressure mask constantly to help reduce the scarring on her face and try to overcome the resulting physical damage.

Katie has received incredible and infallible support from her medical team and her family, but from my own experience and that of people I know, the emotional and mental scars of a dramatic and involuntary change of appearance are often underestimated. Rebuilding confidence and mentally adjusting to new image are as hard to conquer as the physical damage. When recovering from injuries and illnesses we are given physio to help with physical rehabilitation, occupational therapy to re learn daily tasks but very little to cope with appearance. Also, in the initial months or years after a acquiring a disability or disfigurement you are completely focussed on physical rehab and getting some of your life back together; you only have the energy to think about what you look like slightly further down the line. (Though that’s not to say I didn’t change my nail varnish every day whilst on bed rest!) Rediscovering your vanity isn’t on your rehab timetable and it’s hardly a priority; we spend an hour trying to get dressed, struggling for 15 mins to get socks on, tug on some tracksuit bottoms and schlep down to the gym. But at some point we need to get ready for the outside world where society is all too quick to judge on appearance.

When rehab is on target you are encouraged to make trips outside of the hospital, I remember my first trip to a mall with my mum and family friends, I was excited but when I got there it was overwhelming, it seemed so big, so many people and I didn’t feel like I fit in, I felt overly self conscious and I soon became tired; my neck grew sore and the fun I was anticipating soon diminished. Cutting Edge follows Katie on her first trip to a shopping centre with her sister and much of what she said resonated with my own experience. She said she felt embarrassed and that she finds it easier not to look at or make eye contact with other people. I used to feel that way too, I only feel it now on days when I know I’m looking and feeling rough and those are the days I take the racehorse approach; I imagine I’ve got blinkers on and simply avoid eye contact with passing strangers so I can remain oblivious to any staring.

Katie says she feels intimidated by sales assistants at beauty counters thinking that they might be thinking “Why is she trying to buy make up? She’ll need more than that!”
I used to feel similar going clothes shopping in fashionable trendy shops, or expensive designer shops. Sometimes I felt like they didn’t think I could belong, or I might tarnish their cool image. This was made worse in early 90s by the lack of wheelchair access, no changing rooms, no lifts and no online shopping; hardly an encouraging or equal welcome is it? I ignored it all though, making my way up steps into shops and making the shops come to me too. My mum would park the car outside and ask the sales assistants to bring a selection out to the car! Thankfully access is much better now, it’s not perfect by any means, but it is greatly improved.

But none of that addresses the emotional problem…why should we feel embarrassed? Shouldn’t we feel proud for standing out from everyone else and getting on with life in the way we want to. Why is embarrassment our primary emotion, a paranoia that everyone is looking at and judging us? Is it because society and our image obsessed culture make us feel we should apologise for our appearance because we don’t conform to the norm? Why do people see the differences before they see the similarities? Sometimes it can be women our own age that make us feel most uncomfortable, whilst inside we’re screaming “I’m just like you!” We are just women striving to look the best that we can, making the best of the hand we were dealt. Why shouldn’t we all be able to take pride in our appearance if we so wish? Whether that means 2 hours of hair and make up or a quick swipe of chapstick? It shouldn’t be something one is made to feel embarrassed, ashamed or unworthy of, just because they use a wheelchair, crutches, callipers, prosthetics or have scarring on their face or body.

When you’ve suffered a permanently disabling or disfiguring injury you’re desperate to get back to your own life and live like any other vital and active woman. This is something that should be encouraged, supported and applauded at every step. I’m not talking Narcissus here, just simple confidence and pride in one’s appearance. Yet it is treated as almost trivial, which is odd given that our appearance is a constant reminder of what has happened to us; that we shall never be as we were before….
Katie looks back at old photos and mourns her beautiful face; I miss my fabulous legs, I was 14 and 5ft 8” when I broke my neck, I was just becoming a confident young woman and in seconds that all changed forever. Yet over time, I did transform into that confident proud young woman and moved way beyond any disabled stereotypes I had seen growing up; eventually I would like to be able to help other young women regain that confidence and see the beauty within themselves.

Our circumstances of our injuries are so different but the outcomes pretty similar. For example Katie was horrifically and intentionally violated, I simply had an unfortunate diving accident; I can hold no on else responsible nor carry any resentment or blame towards anyone. I am lucky to still have my face intact, and she still has her fabulous body that enables her to do things I can’t anymore. But we both feel the aftershocks of a physical change that is beyond our control and not capable of being fixed by surgeons or fairy godmothers. I have no doubt that Katie will continue to make amazing progress and eventually recognise the strong, able, inspirational and beautiful woman that she has become, whilst always remembering that people who can’t see beyond physical appearance usually aren’t worth the trouble. Our face & body is just the surface, so much more lies beneath our skin.

Ruby Slippers

Loving these!!


Some of you have contacted me to say you've been unable to leave comments. Apologies!
I've now amended this, so feel free to comment; I'm just so chuffed anyone is actually reading this.
New post coming this week, slight delay as I had to edit my previous post for publication elsewhere. (Quite excited)

Wednesday, 28 October 2009

Fix Me: Horizon

I watched this interesting doc on BBC2 last night and found it rather thought provoking. It followed the experiences of 3 different people looking into stem cell research and the possibilities it may hold for improving or even curing neurological, cardiac, genetic and muscular conditions. I didn't learn much more than I already knew; as a paraplegic I'm kept up to date with most scientific advances in this field through the Spinal Research Trust.
However I did question my own desire (or lack thereof) to walk again....Most people are always surprised to learn that if I had one wish, I'm not entirely sure it would be to walk again; it's not a guarantee of happiness and fulfilment.

Don't get me wrong, if there was a proven cure I wouldn't turn it down and of course there are dozens of things I'd love to do given half the chance; walking through the surf on the beach feeling the sand slip through my toes, jump and splash about in puddles, leapfrog over a bollard, try out kickboxing, tap dance again, maybe go for the Irish dancing lessons I turned my nose up at as a child, cycle through the countryside, slow dance with a gorgeous partner, learn the Argentinian tango, ice skate at Somerset House or the Rockerfeller Plaza, run up 26 of flights of stairs just because I can. Oooh and do some cartwheels of course!
In the first year after my accident, the doctors never said that I wouldn't walk again, just that "it was highly unlikely that voluntary movement would return". I had regained quite a lot of sensation below my level of injury (T2) and was hopeful that movement might return but acutely aware that it probably wouldn't. I focussed on the physical rehabiliation that was going to enable me to live an independent life and carry on with being a teenage girl.
I knew about the work being done by the Spinal Research Trust and had faith that scientists and neurologists were working towards one day finding a cure, so that a complete spinal cord injury may not necessarily mean life in a wheelchair. I was 14 and thought that even if it took them 20 years to find a successful treatment, I would still only be 34 and young enough to appreciate 30+ years of movement. So I got on with life and didn't think much about it, read the updates from Spinal Research, discussed any developments with my spinal consultant during my annual check ups at Stoke Mandeville, but didn't feel the urge to chase theories and cures.
Like anyone else I feel hopeful when medical journals publicise some new breakthrough and I was delighted when President Obama changed the US stance on embryonic stem cell research, but somewhere along the way I stopped imagining myself benefiting from any developments, but was just pleased for the hope they would offer other people.
It wasn't a conscious decision, as I grew older my priorities changed, I was enjoying my life and all it was offering me and a cure mattered less. I also knew that any treatments would initially be most effective in the recently injured; my injury was getting older and my neurons would be less receptive to the potential treatments. It does sting a little to realise that nearly 20 years have passed since my injury, and I'm no nearer that cartwheel. Where did all that time go?? I can't deny that for a millisecond I thought would I have been more fortunate to have been injured in 2010 rather than 1990, but as yet we don't have time machines so it is irrelevant!

So as I watched last night, I initially felt sympathy for those chasing the dream of a cure, I was secure in my position of acceptance, wasn't I? Well yes, that was until the last 15 mins when Sophie was speaking with Dr Hans Kierstead at the Reeve Irvine Research Centre in California, he said he believed not only was a cure achievable, but it was a treatment with the potential to be effective 10 & 20 years post injury. At that point I realised I had tears rolling down my face...

As I said previously, I mistakenly started watching with sympathy for the individuals chasing their dream, but I ended with admiration for their bravery and passion for chasing the dream that somewhere along the way I became disillusioned with. But their pursuit and Dr Kierstead's words have re ignited a spark of hope for me and possibly millions of other people who would benefit from advancements in stem cell research.

Love & laughter

Tuesday, 20 October 2009

First Day at Blog School

Well I've finally set up a I need to decide what its purpose should be.
Random rants? Philosophical fumblings? Opinionated outbursts?
Perhaps a little less alliteration...

I'm a young woman living London, a wheelchair user since a diving accident as a teenager left me paraplegic. Model, actress, spokesperson, disability consultant and sometime writer.

Find myself blogging due to an increasing desire to be more outspoken, like millions of others I thought a blog would be ideal testing ground; or a place to crash and burn with tumbleweed blowing past.

Feel free to follow me on Twitter too: @Shannonemurray