I'm not sure when I first started to follow Carly Findlay on Twitter. I can't remember when she went from being a tiny picture on my laptop screen to a person I genuinely grew to care for.
I don’t know how we started to chat, perhaps it was a recommendation from someone on Twitter, perhaps it was our mutual love of all things Callan Mulvey. I honestly don’t know, but the one thing I do know, was that when we started interacting I wasn’t aware Carly had a disability. This I guess comes down to the fact that she doesn’t let it define her. Plus, to be honest, Carly was just ace. Is, just ace. Carly is funny, relevant, spirited, is a fantastic writer and to be honest, often more in tune with the ways of the world than what I am.
Carly Findlay was born with Ichthyosis. In her own words Carly explains what this means:
‘I am red and scaly. My skin gets itchy and sore. My face is the reddest part of my body because it is exposed to the elements. I get infections easily - generally on my legs, but sometimes on my face. Sometimes my infections result in hospital stays where I am bandaged up like a mummy. These infections can make me very sore.’
|Carly as a baby|
I had the pleasure of meeting Carly in real life, for the second time last month in her home town of Melbourne and we caught up for dinner. I was able to witness first hand people’s reaction to her. I noticed it, I’m not sure if she did. The stares on the Tram, the looks from the less obvious on the city streets. On the flip side, I saw her interact with people in a way, and start conversations with strangers, that I guess I never usually would. And people were attracted to her vibrancy.
Recently Carly featured on Triple J’s Hack program discussing love and dating with a disability, so I decided to ask her a few more questions of my own:
HAVE YOU HAD MANY RELATIONSHIPS? TELL ME ABOUT THEM:
Four I guess, maybe five, but I can’t define the fifth one. Though I loved the fifth more than anyone before.
I guess they've all been problematic - the boys have often had bigger issues of their own then my skin condition. I have been asked if I've settled for people with disabilities because of mine. No, but I have settled for douchebags.
There was the guy who lied about his whole life, two unemployed ones, one addicted to painkillers who had an alter ego, and one extremely troubled man. Charmers! But I saw good in all of them at the time, sometimes beyond. Sometimes I think when people have bad attributes, the good shines through, like a silver lining.
And there have been a lot of unrequited loves. I loved my best friend for about three years. I'd watch the footy, bored out of my brain, just to be with him! He and I shared a moment, but he told me I was "too fucking special" to him to take things further. Devastating.
Sometimes when I have had a boyfriend I feel like letting those who doubted I ever would have one know. "I've found love! I've had sex! And you never thought I would!" hahaha!
WHO IS YOUR IDEAL MAN? WHAT ARE HIS CHARACTERISTICS, BOTH IN PERSONALITY AND PHYSICALITY?
I like a man who will treat me right, is compassionate, understanding and accepting, is intelligent, makes a difference in the world even if it's just a small thing like helping a stranger, and who can have a laugh.
Physically I like a man who is taller than me, nice eyes and big smile. I like a bit of scruff - a beard is cute.
When I was younger I really liked boys with long hair and piercings, but I don't know if those characteristics work well now I'm looking in the 25-35 age bracket! I once had a boyfriend with 11 piercings, a chain that went from his nose to ear rings, and had long plaits with a shaved top of head.
Celebrity ideal men – Callan Mulvey! Sam Johnson. Hamish Blake. Brendan Cowell. Caleb Followill from Kings of Leon
WHAT DO YOU MISS MOST, BEING SINGLE?
Sharing my day with someone.
Being held at night.
Knowing things only "we'd" know.
I KNOW IT PYSICALLY HURTS OFTEN TO BE TOUCHED. INTAMACY IS A BIG PART OF ANY RELATIONSHIP. IS THIS A CHALLENGE?
Being touched doesn't hurt all the time, except when my skin is really sore. I guess the biggest challenge is being comfortable enough to let someone see my whole body. I'm happy with my shape and size - I got some great assets! But I worry about how they'll react to my skin shedding.
That's probably a big factor in me preferring to be intimate with someone I love and trust, and who is understanding, rather than casual encounters. Sometimes I wish I was more inclined to pursue casual encounters, but the emotional effort for me is so great when starting any relationship that I'd rather expend the energy cultivating a more meaningful relationship.
DO YOU FALL FOR WORDS OR LOOKS? A COMBINATION?
Usually it starts with words. I fall for a good vocabulary and articulate writing. I think I had one relationship or whatever it was, based on a year of words (texts, emails, phone calls) and three days physical contact.
Maybe it is because most of my relationships have started with the Internet.
Words are hard though - you only get a 2 dimensional perspective of the person. It is easy to forget they may have values that you don't agree with. And you can also conjure up an ideal.
I think If I have a connection to someone via words, the physical attraction heightens. With Matt*, I hardly took notice of his looks initially, it was all about his thoughts and words. And perhaps because of our connection I thought he was one of the most beautiful looking men I had ever seen.
HAVE YOU CONSIDERED OR TRIED A DATING SITE?
I have tried many, particularly when I moved to Melbourne. I'm in two minds about them whenever I use them. I want men to get to know me for my fabulousness, but even online there's a superficiality, and despite being honest about my skin and writing about all the great things I do in my life, if they don’t like the way I look, or don't like that I have a chronic illness, they won't get to know me. Even despite their profile listing that they want a girl who is different, and they have a kind heart.
Sometimes I think as 'open minded' people say they are, disability and chronic illness can be too confronting for them. It's like being in a very competitive catalogue.
I have met a few of my boyfriends online though. One on a dating site. The others on ICQ and Facebook - and one at the train station (I dumped him on a train too!) It's hard to be honest when communicating with someone from an online dating site without it sounding like I'm pleading for acceptance.
WHAT IS THE WORST THING A GUY HAS EVER SAID TO YOU? THE BEST?
"your looks and illness are too much of a burden on me" - an Internet date. Didn't go past the first date.
"didn't I tell you I don't love you anymore" - an ex boyfriend
My second boyfriend used to be very protective of me and would often be very defensive if people stared or commented. It was chivalrous, but got annoying when he'd be more confrontational than the starer!!
It's also been nice being told "I love you". (of course)
"You are the person I admire the most. Not my favourite rock stars or sports personalities. YOU.
99% of the time I see your posts they are very constructive and mostly of some joy.
I wish I had the courage that you have.
I wish you everything Carly. You are the most beautiful person I have ever met.
When I see the pics of you smiling, it makes me smile."
SO YOU HAVE RECENTLY SPLIT UP FROM SOMEONE. WELL, FOR GOOD AND YOU ARE HURTING. WHAT SONG IS ON REPEAT RIGHT NOW?
I don't know if it's a break up because as I said, this thing has been so hard to define. (Darren Hayes once sang "how do redefine something that never really had a name?") But it is certainly I love/d him more than I have ever felt, and now I feel it's a loss and I feel like I'm grieving.
I discovered I don't have any uplifting songs. They all feel like they've been written about or for me!
Gotye's Somebody I used to know and Adele someone like you have fitting words for the situation.
Darren Hayes - Bloodstained Heart - it feels like he's giving me a hug with this song
Bertie Blackman Television - I can just relate to the lyrics where she wants to be like everyone else, she wants to fit in, be loved.
IF YOU COULD GIVE THE GUYS OUT THERE A WORD OF ADVICE ON HOW TO APPROACH YOU AND/OR ASK YOU OUT, WHAT WOULD IT BE?
Don't be afraid of the way I look. Take a chance and get to know me to find out I'm more than just a red face. And I hope that they can see my beauty - inner and outer. I am a great cook, love music and will make you laugh. And my boobs are pretty good too!
Below has been taken from Carly’s blog which I highly recommend you read. She captures the essence in a situation in such a way, I could only dream of being able to replicate.
‘This week marks one year since I began to love him. I remember my realisation – it was after a text from him, telling me he is glad he started talking to me, it feels so easy, and reconfirmed after an after midnight text following a three hour conversation telling me I am the perfect girl for him. I fell quick, I fell hard. I wonder whether I am destined to keep falling in love this way – through words alone?
A couple of months ago I wrote about wondering whether a year will go by with a day where I wouldn't think of him. The answer is no. There hasn't been one day in these 12 months that I haven't felt something for him. Sadness, frustration, and hope. But mostly love.
Just after I wrote that piece, we became in contact more than we've ever been. It has been one of the good things to come out of a very bad situation. Long emails and texts almost each day, and one call. The contact is, to an extent, more positive. I'm comfortable talking about things with him that I'd never with somebody else.
I feel a different kind of love for him now. It is more realistic due to the difference and distance between us. I feel it's evolved from idealism and me wanting to be in a relationship, to lustful, to heartbroken... and now it's this type of caring, understanding, non judgmental, fully trusting love on my part. It's the kind of love I hope to feel growing old with someone. Only I won't with him. It's a nostalgic love. I feel more sad than happy about it, especially when he told me he wishes he could have our time again.
I don't expect love from him in return. Though in the past I've hoped for it, I've never expected it. Just loving him is enough for me. Is that unhealthy? To settle for unrequited love?
This thing. It's based on words and memories alone. And need. Mutual need. Unconventional love. I sort of want to set him free from my heart. He deserves this love from somebody closer to him, and so do I. And then I get sad at the thought of him no longer needing me.
A month ago I went to see a counsellor. The counsellor asked whether I loved him.
I said yes.
The counsellor asked whether I told him that I loved him.
Only once in person. A few times recently in text, to remind him of his worth to me. But I don't want to push it. I don't want to ruin things. Maybe he knows my love for him through my loyalty.
I have every right to tell him I love him, the counsellor told me, for I have earned my stripes.
I've earned my stripes. I love him.’
I find the above a beautiful piece. Settling for unrequited love? You deserve so much more than that Carly.
Thank you Carly, you are a simply wonderful.