It took so long to reach the point where I didn't worry what others thought of me. I know who I am, am comfortable and confident with how I look and am actively educating people about what it's like to live with a visible difference and chronic illness.
But then Reddit happened. And I've been struggling a little. I can't pretend the Reddit experience didn't affect me. To have my picture analysed, diagnosed, ridiculed and threatened by hundreds of faceless people was hard. There's very little recourse with the administrators of the site, except to set the record straight myself. And then to have some similar comments be left on this blog hurt too. It stressed me, and now I'm skin-sore too, an unfortunate outcome of being stressed. My confidence has taken a beating.
As a blogger, I can't help wonder whether I brought this on myself?
Was it inevitable that one day I wouldn't be able to control my story and image - the very thing I have been doing through blogging?
I keep hearing the old "you put yourself out there, you gotta expect the criticism" line that is all too often thrown at writers - usually from people who don't write about themselves on the Internet.
Should I have ignored the link I saw in my blog stats to protect myself?
Did I inflame it by responding?
Is this what I eventually wanted - some sort of fame sparked by an Internet war?
Would writing yet another post about it be a perpetuation?
No to all of the above.
I didn't ask for hate speech. Looking different does not give people permission to spew their misinformed and offensive opinions about the appearance of a complete stranger on the Internet. Or in person. Those Redditors, they knew nothing about me. Even when they cut and pasted words I had written about my relationship onto their hate-filled forum, wrung them out and laughed at them, they still only managed to get to know me from two sentences. They judged me only on how they saw me, nothing more. They should be judged on their actions in the dungeon of the Internet. I wonder what they're teaching their children about diversity?
Hate speech is driven by a pack mob mentality. But so is kindness. So much so.
I have been following the incredible story of Lizzie Velasquez - a young woman with a visible difference. She was ridiculed by YouTube commenters, and though self advocacy, she took the power back. And on her Facebook page yesterday, she expressed her gratitude of getting 50,000 followers on YouTube, saying "I went from YouTube being the one site that crushed me to the one site that has helped turn my life around." Bravo Lizzie, you're one of my appearance activism heroes!
Lizzie's TedTalk inspired me to dip my toe back into the blogging water. Aside from being in holiday lazy mode/time consumed by being in love/uninspired to write here on my blog, I've been scared. What will they be saying about me today? I've woken up in the middle of the night a few times - scared of strangers' nasty words - the very thing I wasn't scared of when my picture was first misused. I want my blog to be my safe place again. I want people to be visiting because they want to read, not because some of them are seeking freak-show-esque entertainment - hate reading on steroids.
I think the readership is returning to normal. Hits are still high, considering I have not written much lately. People are reading because they want to, I guess. I have had so much support - the love from strangers (and friends, plus the media) is unfathomable. I still haven't got through replying to all the emails and Facebook messages sent - I'm sorry. I've had a few friends and social media colleagues write amazing posts in my defence - Arnebya, Friday, Jenni - and I ended up linked from A Mighty Girl and National Geographic too! A big thank you to everyone for showing support.
Over the Christmas holidays, we had a celebration for my Mum's birthday. I met M and S, some friends of my parents', for the first time. I've been in contact with them for about a year on social media because they've been interested in my writing. They've come to know a lot about me through my blog and also what my parents have told them. And so it made my day when I was given an artwork made by M - an upcycled frame containing scrabble pieces spelling 'I am not an animal', with a dedication 'the day Carly took on the Internet and won'.
I may not have taken on the Internet in such a big way. I'm not as brave as I thought. But I did make a small impact - one that matters to me. People from across the world have written to me, telling me they are now confident enough to accept their ichthyosis or visible difference through reading my story, or that my attitude and resilience gives their children hope to be confident and assertive. A reader wrote to me telling me my writing saved them from making the worst decision. Knowing that they're ok, just maybe because of my words, means so much.
My boy took that picture of me that's at the top of this post. He used it as his phone screen saver, which made me all shy. I'm still getting used to being the object of another's admiration. The vain side of me initially didn't like it - thinking it was too close up, that my forehead and teeth are giant and my lips are wine-stained. Then I realised that this picture is how someone who knows me and loves me sees me, which is more important than the way someone who doesn't know me and has bad intentions sees and speaks about me.