If we measure life’s worth by social media reactions, which we shouldn’t but we do, 10 year old me feels more loved, valued and visible in the last few days of 2016 than I did when that photo was taken in 1992. I snapped a photo of the 24 year old picture in a frame on my parents’ very vintage hifi speaker yesterday. I cropped it and uploaded it to Instagram and Facebook, not foreseeing the impact the response would have on me. I didn’t plan to think about it so deeply. As I write this, the picture has received more than 200 likes on each platform, and dozens of compliments. If 10 year old me could see those now, I think life would have been a little easier. At least 10 year old me could see there are people out there who think I’m awesome, just from a photo alone.
10 year old me didn’t know that in 2016 I would be married, kicking career goals and very happy with life. I wish I could 3D print that photo of her in the green, white and grey uniform, press her from the paper and take her by the hand and walk her through everything that happened in 2016. Show her she’s surrounded by positive, supportive, smart and accomplished people. Reassure her that what sets her apart will be the very thing that she’s using for social good – and an income. See her sigh and smile with wonder, telling her “who would have thought it would be this amazing?!”
On social media likes terms, 10 year old me had no idea that her school photo would be as popular as her wedding photos from 2016. She’d have no idea how hard it was to reduce a list of 100 or more loved ones down to an affordable number of 55 guests, and that her favourite singer would sing at the wedding. 10 year old me couldn’t even consider the idea she’d be married to a nice man who believes her skin that falls on him and in his pockets is love, not something disgusting to be feared and brushed away. He loves me and all that I leave behind.
Of course, 2016 hasn’t been all good – there was some really awful times including some more blatant discrimination, betrayal, conflict, difficult decisions, unpleasant situations, inappropriate behaviour and aggression from someone with Ichthyosis, a horrific wisdom tooth removal that’s resulted in a formal complaint to the dental board, the death of several friends and constant soreness. I’m even sore today, dammit. All through the hard times, I’ve had dear friends checking in and helping me through.
But there were great moments! I got married! Went on a European honeymoon for four weeks. Spoke at an event before Julia Gillard spoke. Wrote for the ABC And SBS! Wrote for News Limited! And Daily Life too! Won an award. Won a scholarship to a health and social media conference. Was featured in an art exhibition. Did lots of media. Went on a few podcasts including Osher Gunsberg’s podcast. Started my own podcast Made some great new friends. Had a constant and comfortable level of money in the bank. Left my safe full time job and started a new career – a part time day job. I also write and speak mostly about what it’s like to look different. I’ve been thinking and writing real critically about disability issues that affect not just me but my friends and colleagues. I met a few more friends with Ichthyosis – in Australia and overseas. Continued to speak up about ableist and discriminatory behaviour, and become less apologetic in doing so. Adam and I are talking about buying a house in 2017. 2016 was the year I grew up. I wish 10 year old me was here to experience the joys and sadness and hard work and fun.
I look at the photo of that little girl. 10 year old me. Unruly hair. Perfect teeth that I had not yet grown into. A beautiful smile. A red, glistening face – the thick white smears of Sorbolene cream must have recently been replaced with the paraffin-based ointment I still use today. Big skin flakes stuck to my jumper (didn’t the photographer think to tell me to brush it off?!).
I had perfect handwriting and a creative mind. I’d sew clothes for my Barbies on my days off school, and I remember at the end of that year, I received a craft award, which was a book about how to make miniatures for a doll house. I read TV Hits magazine, alphabetising all the song lyrics, and I was a huge fan of the Australian hair band Southern Sons, after my very cool babysitter and her boyfriend introduced me to them via Rage videoclips the summer before. That summer, Mum would buy me an extra large sized tshirt, featuring Southern Sons, as suggested by her then twenty something colleague. It came down to my ankles. I have never worn it out of the house. Sometimes I wear it to bed as an adult. It’s down to my knees now. I was still at the age of playing with dolls yet wondering when my period would come (it came in August 1994, when I was 12, and that marked the start of me shutting the bathroom door), and listening to the girls in my class talk about the boys they wanted to get with, knowing that would probably never happen to me.
I was so self conscious. I just wanted to be normal, whatever that is. Normal in a white bread small town was white skin, long hair and a short pleated netball skirt. It was sport on the weekends – actually enjoying sport. It was friendships and parents who were white too. It was church and farming and liking the outdoors. It was splashing in the pool in the summer, enjoying the heat. Normal wasn’t me.
I didn’t identify with having a disability in 1992. (That was only recently.) Ichthyosis was just a skin condition, and the girl in my class who had cerebral palsy was disabled, I certainly wasn’t!, I thought with defiance. But I wanted to be a dermatologist – until I found out it would take me until 2017 to qualify as a dermatologist, and was told by my then dermatologist that I would probably be mistaken for a patient in my own consult room too many times. Then I wanted to be a writer.
10 year old me was lonely. I sat on my own most lunchtimes. I read a lot of books. When the girls in my class braided each other’s hair, they avoided mine. They wouldn’t sit where I’d been because of fear of contagion – even though I’d been at the school for five years and in that time, no one had caught Ichthyosis. Duh. I preferred to be in hospital because the patients and nurses knew what it was like to be different and sick, and they liked me more there. A year or so before that photo was taken, I told my Mum that didn’t want to live anymore, and I got help from a psychiatrist, but I don’t remember any of that time of my life.
A man (then boy, of course) whom I went to school with a few years after the 10 year old me photo was taken recently told me he was one of the only boys in my class who would hold my hands during dance class in PE. The other boys covered their sweaty hands and sniggered to their friends when they had to dance with me. They might catch something. But not him. He braved my rough, oily red hands. He feels good about being one of the few to actually hold my hand. He said the other boys gave him shit for it. My heart sank for two reasons – thinking back to the time where people were too immature and repulsed to hold my hand, and for my now friend telling me he took a hit for the boys club. Such a great guy for telling me this.
As Clem a Ford writes in Fight Like A Girl:
“We have to resist the urge to respond to basic decency by treating it as if it’s some kind of enormously magnanimous gesture. It isn’t. There shouldn’t be anything astonishing about a man who doesn’t degrade women, hurt them or treat them as somehow less than him.”
I was actually revolted at this former classmate’s admission of decency when he told me, and my revulsion was confirmed when I heard Clem’s words. I wish I had the guts to say them to the people I went to school with at the time. Thanks Clem for making me realise that just because someone says they took one for the team, they’re not a good guy, they are still contributing to the bullying.
There are lots of photos of me at various ages scattered around my family home – mostly milestones like school and university graduations and meeting Darren Hayes. In my early years I wouldn’t smile for the camera, I’d just screw my face up because I didn’t think I was worthy of having my photo taken when my face was different to most people’s anyway. There are a few school photos of me with my sparse hair tied back in different coloured scrunchies and ribbons through the 90s. What a relief/faux pas it was when I found mousse that made my hair curly (yet so crunchy it wasn’t nice to touch). I don’t have many social photos of me in my teenage years – perhaps I was too self conscious and friendless to take any? Maybe it is just because we didn’t yet have digital cameras and social media?
I have seen that photo of 10 year old me countless times. I hadn’t really taken notice of it until this week. When I looked closely, I saw a beauty that I hadn’t noticed prior. Maybe that was the year I started taking care of my own skin. But I think it’s because I see myself now, as a 35 year old woman, in that 10 year old face. A smile, and a twinkle in my eye. Big hair, don’t care. There was so much potential for me – but I didn’t realise then
Mum always told me to believe in myself and not to worry about what others thought of me. I tried when I was 10. But being proud of myself, and confident, especially when I was made to believe I looked hideous because of how people my age spoke to and shunned me, was seen as being up myself. No one wanted to be that, or liked that. It’s so much easier to display that confidence now. No fucks given.
When I was 10, I needed to meet others with Ichthyosis, like I’m doing now. I needed mentors in my life. I needed to know that life as an adult would be ok. But the few people with Ichthyosis that I met spent their lives looking for cures and that made them really unwell. I knew when I was 10 that I didn’t want to be fixed, even though so many said that I could only succeed if I didn’t have red, scaly skin.
It’s 24 years since that photo was taken. I remember the isolation and being told I could do anything as long as I chopped my skin off like it was yesterday. In my 375th argument on the Internet this year, when someone defended and dismissed bullying at my high school and of course I had something to say, a stranger told me they hope I put my sad school days behind me. Of course I’ve achieved and found so much happiness and love since then, but I remember the hateful words and the exclusion.
10 year old me wondered when someone would say I was beautiful or smart or a good writer, instead of calling me “redskin” or dragging their feet because they had to sit with me at lunchtime. I wondered when someone would come to my house on a Saturday to play Sylvaniam Families or My Little Ponies. I wondered when teachers would realise that sitting outside in the heat was just as bad for me as playing sport in the heat, and could I just go to the library and read, please? I wondered for so long when someone would hold my hand, let me touch them, ask me to braid their hair.
As I began to write this piece in bed this morning, Adam, my husband (my husband!) reached for my hand, sleepy and naked next to me. I brushed it away, briskly. “I’m trying to write”, I told him. “I’m trying to love you”, he replied, smiling. And then I took his hand and let him kiss mine. 10 year old me would be giggling at the thought of the love she’d have in 2016.
Cheers to 2016, and here’s to 2017 – I hope you have a great New Year. Thank you for reading my writing in 2016 – you are so wonderful.
That’s 35 year old me doing just what 10 year old me couldn’t get away doing – lying on a massive toy shaggy dog in an art gallery a few days ago. I could be myself around a school friend as she took the photo, and that felt good.
Has this blog post helped you or made you think? Please consider buying me a drink. Thank you!
(I’ve been reading Lindy West’s and Clem Ford’s memoirs this holiday. They are such great writers and have made me think and laugh. This post is inspired by them – and has given me thought for writing my own memoir soon. Hold me.)