Friday, 22 July 2011

Tune in to Radio Carly

 

“It takes more courage to reveal insecurities than to hide them, more strength to relate to people than to dominate them. Toughness is in the soul and spirit, not in muscles and an immature mind.” - Alex Karras

Carly is one of the most beautifully tough people I have ever met. EVER. And I met her in the real-live flesh before I discovered her blog  - you know, like the olden days.

She is 29, lives in Melbourne, has killer taste in clothes and music. Owns a wicked sense of humour - and probably has the biggest battle scars on her heart you've ever known.

Meet Carly.

::

It is interesting that jealousy arises in those who should have the most empathy.
I was recently featured in New Idea – a double page spread. Of course I was hesitant. My story in the mainstream media's hands. My story about living with a rare, highly visible and often confronting chronic illness called ichthyosis. A story that could be manipulated and sensationalised like a great chunk of pity-putty. But it wasn't. I didn't write the article, but my personality, humour and honesty shone through.

The New Idea article was a small window into my experiences. To make those who don't know me think differently about physical appearance. To make people see my achievements, despite. The writing on my blog is the reality of my life. The fun I have shopping and seeing bands, the food I cook, the clothes I wear. Sometimes the reality I write about is tough. Hospital. Harassment. Love. Self doubt. Overachievement. My appearance. But it's the reality that I am prepared to share. And I am glad I do.

In the 19 months I've been blogging I have found a new support network. Online to offline. The friendships I've formed have been amazing. I have found support, acceptance and encouragement in strangers across the world. I have also been told I've helped people with ichthyosis and other disabilities and chronic illnesses. I've been told by parents of children with ichthyosis that they hope their children grow up to have the same positive outlook as I do. This is a privilege. And I've never sought pity in any of my writing pursuits.

Interestingly, the only negative comments I have received about my New Idea article, and also my writing for the ABC and DiVine have been from another person with ichthyosis. This criticism has been in the form of public online beratings. Despite our obvious similarity we are poles apart. Our generation, upbringing, support networks, outlook and choice are poles apart. The responses I have received from her are because of their own insecurities and bitterness. The jealousy and nastiness within are far more painful than her ichthyosis. Empathy versus jealousy. I know what I'd choose.
I have chosen a good life for myself. I could have sat at home hidden away, covering up, being ashamed. It's been suggested that I do. But I've worked hard at my own integration. I've had the support and encouragement from my parents. I've shown everyone I've encountered that I CAN. The road hasn't been smooth. I've experienced judgement, loneliness, fear, heartbreak the desire not to have ichthyosis, bullying and physical pain. But I've just gotten on with life, despite the bullshit. Nothing has been handed to me, nothing has just fallen into place. I've worked damn hard to prove that I am not just a red face.
We all have the same opportunities in life. We can choose not to take them. We can choose to be angry at the blows life has dealt us. We can choose to feel hard done by.
I've chosen to see humour in awful situations. I've chosen to grab opportunities firmly with both hands and run with them excitedly, in awe of the possibilities. I have chosen an education, a corporate career and a media journey (writing and television) - an income for my independence. Friendships haven't always been easy, but I've worked hard at them too. I have chosen happiness. And these choices make my ichthyosis-riddled life a whole heap easier. "

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Remember Fenyella? Yeah - Carly told me she related to that video, and even slid it into a post on her blog. And I felt ashamed of myself, really. I had a bung tooth for one day and felt like crap. Carly has been dealing with the very real issues of society's expectations regarding physical appearance for her entire life.  

She writes, on an exquisite post called  Untouched -
"After so many years of peoples' repulsion at touching me, the times when I've been intimately touched are amazing. Not necessarily sexual, but the hand holding, the brush of the arm to indicate interest, a kiss on the face. They're all electrifying. The best feeling in the world. I can remember every single caress during the first time I was in bed with a boy - even though it was in January 2000. I remember everything about how it felt."

Carly, I couldn't use that photo you emailed me because it was in a word document and I got all confused. So I went to your facebook page and decided to give myself permission to pick one myself. I like the one I chose - you look cool, tough, and sassy.

When I come to Melbourne next week I am going to hug you so much. I may not let you go.
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