23 November 2015
17 November 2015
Gosh. I'm so busy I've had very little time to write here. Regular writing should commence soon. I've got so many words inside me. Today I wanted to do a quick post - about a two year anniversary.
It's two years today since Adam asked if he could be my boyfriend. He's grown so much since we've met - his confidence has soared and he's started his own business. We aren't celebrating together tonight - I am a handyman widow (like a cricket widow). He's assembling someone's furniture in Northcote. I'm so proud of him. ❤️
09 November 2015
Last week was a big one and so this past weekend has been spent resting. I had a nasty fall midweek, which has left me in pain for days. I took a tumble while walking out of my manager's office - tripping on a chair leg and smacking my knee and hand into the metal edged door. I immediately sat down, laughing it off, then applying a cold compress to my knee and elevating my leg. Overnight, my body stiffened and I woke up with a very sore foot in addition to the other injuries. The skin on my knee healed quickly as always, but it's my joints that feel rickety.
Adam and I were like ships in the night - me at concerts and him at Cubs and handyman jobs most of last week. Dinners were eaten out or on the run. We saw each other briefly after 10.00 pm on some nights, for a quick talk about our day and a mandatory cuddle. I missed him a lot. When I told him I fell, he rang me straight away, asking if he needed to come home. I said I'll be fine. He got home late, and straight away removed the quilt to look at my leg. Then he applied antiseptic cream to it. I hadn't done so because I feel tougher than my skin looks. It'll be right, I said. He wanted none of that, showing me such love in looking after me. I fall for him - in a safer way - every day.
This was my first big fall since I fell down the stairs in 2012. I cut both knees then. I'm clumsy. This time, three years on, it hurts more to walk. Each time I take a step downstairs, my joints ache. I went to see Fleetwood Mac a second Tim (!!) and when I got home, I felt like I'd been for a run. Adam has helped me stretch my legs out. I feel less sore, steadier.
When I was looking for a place to live in Melbourne, I had a fall After a long, hot day of househunting. Mum and I were so over it, and I wasn't watching where I was going. I tripped over the pavement, and Mum couldn't stop laughing at me. I did not see the humour in it at the time. Nor did I see it when I suddenly fell and did a drop roll on a flat source while on holidays in Tasmania. So. Clumsy.
Mum fell over a few months ago - she fell chasing a chicken. Skipping over in the mud, she did the splits. She used to be a very good gymnast in her teens and 20s. But that night in the chicken run left her bruised, swollen and in need of an ambulance.
My Dad tried lifting her up but she couldn't move, describing herself as dead weight. She had us in stitches telling us about how Dad asked if she had put on weight. "This isn't the time to comment on my weight", she scolded him!
It's funny how as a child, falls happen so often. We fall when we are running and playing. Scraped knees were a reminder that we were having fun. We bounced back quickly, agile limbs and a rush to get back to playing. But as an adult, falls frighten us. They make us unsteady as we walk over pavement cracks weeks later. And we feel so silly at our clumsiness.
Have you fallen down lately? How long did it take you to feel steady again?
05 November 2015
I've got a few doppelgängers. They span generations - some are 20, 30 years older than me, and others are toddlers. Genetic similarities thread through strangers across the world, giving us a sense of knowing and belonging, even though we might not know each other.
We all bear a strong resemblance because of a severe skin condition called Ichthyosis. It's equally intriguing and comforting for us, and confusing for others.
I was at a party recently, catching up with old friends and making new friends. One friend introduced me to her friend, whose eyes immediately lit up when she saw me. She recognised me. Due to my red face, I'm easily remembered, and sometimes (now more frequently) recognised because of my writing. It is quite exciting! She told me she'd seen me on a friend's Facebook that week, and was adamant I'd been in Brisbane. I hadn't - though I was on the Gold Coast at the time. She finally found her friend's photo - her friend was indeed with a female with a red face. But it wasn't me. Her friend had met my nine year old friend Lucia, who also has Ichthyosis (the same variation as me).
I got a little frustrated and told her that I know she didn't mean harm, but I think there can a problem with people without disabilities seeing one person with a disability or facial difference and thinking they've seen them all. Media portrayal of disabilities seem to make people experts! She understood where I came from and apologised. I also told her that my little friend is nine, and I am 33! (My beauty regime of paraffin and natural facial peels leaves me looking super youthful!) And of course this conversation inspired me to explore the topic more, and so here I am.
I encounter being mistaken for others with Ichthyosis a lot. It's a rare condition (20 per million), and patients with the Nethertons Syndrome (mine and Lucia's type) and Harlequin types do look very similar. Sometimes people stop me to tell me they've seen me on TV - and I smile and say I was on Channel 31's No Limits for three seasons - very pleased someone has actually tuned in! No, they correct me. They've seen me on Embarrassing Bodies or Medical Incredible. That's not me, I tell them. But yes, they've seen me and my sister, and how much I scrub my skin. And they ask me when I moved to Australia, because the show's subjects are English?. And I tell them again, that's not me - I'm an only child and am Australian. They shrug and tell me they know so much more about Ichthyosis thanks to these shows, and I tell them I would never appear on a show like Embarrassing Bodies "But you look just like them", they continue. Yes. Yes I do.
Professor Ingrid Winship, Professor of Adult Clinical Genetics, University of Melbourne and Royal Melbourne Hospital tells me the reason patients with genetic conditions look similar is a complex one.
"The DNA instructions that cause the health issues may also have an influence on the development of our facial structures. We are able to recognise faces from an early age, and it is possible that the relationship of facial features ie how widely spaced one's eyes are or the shape of the chin, which people with some genetic conditions have in common, that create a "pattern" which is easily recognised", Ingrid says.
My new friend from the party can easily be forgiven for mistaking two people with Ichthyosis. There is a genetic explanation that has taught me not to be so defensive when encountering these doppelgänger questions.
"A child with Harlequin Ichthyosis, for example, may look more like another child with Harlequin Ichthyosis than their own sibling", Professor Winship continues.
When I've met others with Ichthyosis, I've been struck by how alike we look, and how different I look to my parents (despite Professor Winship telling me I look a lot like my Mum). It's like looking into a mirror, despite any age difference. We have similar face structures and hairlines, a slight build, and I've been told our pinky fingers and toenails are curled. It's like we are one family. Parents of children affected by the condition tell me about the cute instances of their child seeing another child and thinking it's them. It must be such a relief for them to see others like them out there. It has been a relief for me. It was amazing to see a room of similar faces at the Australian Ichthyosis meet earlier this year.
Professor Winship says "Being a bit technical, there is a genetic effect recognized called pleiotropy- that a change in one single gene can cause multiple effects on the body's health and appearance. This is seen in Marfan Syndrome, where the eye, the heart and the skeleton may all be affected by a single genetic change."
Prue Hawkins, who was a close friend of the late Stella Young, has often been mistaken for Stella. They have the same disability, both had a nose and lip ring, and they shared the love of knitting and dancing.
I asked Prue why she thinks the confusion happens. "I think people see the wheelchair, then a small female in it and just assume we are the same person. Even though for years I had long blonde hair and hers was short and a variety of colours", she tells me.
Prue also relates to my "seen one, seen 'em all" theory.
"Stella and I used to joke that there could only be one crip in the village (circa only one gay in the village from Little Britain)", Prue says. "If you look at photos of us together, we really look nothing a like. But again, people see the wheels and assume we are the same person.
"It started as a joke between Stell and I, but in the end got so frustrating. Because heaven forbid there be not one, but two balshy, powerful and capable women in this world who were willing to "stand up" for what they believed in (pun intended)."
I first came to know of Prue when she appeared on SBS Insight, discussing issues around disability and employment, and a fellow guest mistook her for Stella. It was amusing, but also detracted from an important issue, and raised another - the perceived homogenisation of disability appearance.
The Insight guest couldn't get past Prue's resemblance to Stella to address her by her correct name.
"I was mainly embarrassed for him if I'm honest. He said he was so excited to be meeting Stella, and I kinda felt bad for him that I wasn't her. I think he was so nervous about being on TV, so I just let it go. I didn't actually correct him, Jenny Brockie (the host) did".
Prue believes the idea of "only one crip in the village" can be reduced through increased exposure of people with disabilities. "The more PWDs are out there, in the community and living a normal life (whatever normal is), the less of a novelty act we will become."
There is still and surprise and inexperience in talking to people with disabilities, and being mistaken for someone else is tiring. But the genetic explanation helps me understand why this is a common occurrence. Our brains are wired to recognise similar characteristics - genetic patterns. And while I (and Prue and many others) think it's important to take a few moments to think before you speak to disabled people, taking a step back from the personal experience has made me realise what an interesting phenomenon this similarity of appearance is. I can't speak for others with Ichthyosis, but I think it's pretty amazing I have a whole 'family' out there who truly shares some of my experiences of what it's like to look different.
This article first appeared on Daily Life. I loved writing it, and my editor Candice gave me wonderful feedback, which encouraged me to explore more complex themes in my writing.
"What a TREAT to finish the week with your piece. As you know I'm a big fan of your writing but this is definitely one of my favourites. It's SO interesting, heartfelt, and well researched. I really liked the way you told it -- and the reflection of having "a family out there who share your experience of what it's like to look different". What a wonderfully powerful note to end on."
03 November 2015
I used to do concert reviews on my blog. I haven't done one in a while. When I got home last night I wrote a short one for Facebook. I wanted to record it properly to look back on. So here it is.
Last night I experienced one of the best concerts I've ever been to. Fleetwood Mac. Wow. A concert I dreamed of going to since I watched The Dance in 1997. I feel so lucky to have been raised on their music - listening to them on record and cassette from when I was very small.
The music tonight was outstanding. The professionalism, talent, engagement with the audience, energy - amazing. Although we had seats in the nosebleed section, the band treated us like we were front row.
- Stevie Nicks' tambourine, and her pep talk about "reaching for the stars (stores) and following your dreams" before Gypsy. Landslide was perfect.
- Christine McVie's voice. Her golden honey voice. And her gratitude to be back playing with the band. Songbird was beautiful.
- Lindsay Buckingham's anecdotes about the band were interesting. He has so much energy. Big Love was a stand out.
- The tinkles Mick Fleetwood made on the glass. His charisma. Those red shoes. He must have a great heart to play a three hour set on the drums.
- That John McVie is in good enough health to have toured 110 shows and counting.
- The confirmation that the past is in the past and the band is together now. "The Mac is Back", Mick Fleetwood said.
My only regret is not shelling out more money for a better view.
Loved it. A million stars.
02 November 2015
Back on a rainy Saturday evening in August, I was travelling home on a train. I'd just been at Quippings rehearsals, fittingly discussing disability politics, including the behaviours of over niceness and pity thrust upon disabled people. I was looking at social media on my phone, not speaking and not in any need of assistance (I would ask if I was - and that's rare). Suddenly I was faced with this situation:
Stranger on train: "excuse me, would you like a wet wipe?"
Me: "no thanks."
Stranger: "I think your face is a bit sweaty and you could use one."
Ahh they mean well, don't they?
So I wrote about it on Facebook. Those exact words actually. I wanted to show I was amused and exemplify the audacity of strangers. This is what I call intrusive behaviour, no matter how well-meaning their intentions were.
What followed, and even harder to take than the initial intrusiveness, was the responses from friends and acquaintances. They argued that I should educate at all times, and that kindness was a motivator.
While I do educate where I can, I also have the right to decide when I want to educate. Most times I just want to get on with my day. There have been suggestions I should carry cards with an explanation about Ichthyosis, and hand them out to the curious. Depending on how they ask or approach me, I tell them I blog and give them a business card. I don't put anything about Ichthyosis on my card because I don't want that to be defining. And I've also seen how people react to info cards, and it's not positive.
Then there's the kindness thing. A friend said this woman on the train was probably being kind, and she hopes my response doesn't put her off being kind in the future. I totally see this point, but I think people need to consider whether a disabled/sick person is really in genuine need of assistance, or whether they're just being nosy themselves. I would have preferred it if she had said hello, and then politely asked about my skin.
Many told me they have been raised to offer help to people with disabilities. There are so many times I've seen people genuinely in need of assistance and no one stops to help. But often assistance is offered when we are just doing average things. Like eating or reading or using an iPhone to read the internet. Kindness is lovely, but kindness in this form can be attached to assumptions. These assumptions of helplessness that are rude and awkward and pitying. And it's so hard to explain that to people who might not have encountered this in any form.
This is such a difficult issue for me to discuss. Sometimes the comments from others around this topic are harder to digest than the comments received from strangers. It makes me want to censor myself. It's judgmental and demanding at times. I also think that for people who don't encounter these kind of questions on a regular basis, it's easy to dismiss this as caring or curious. Many friends with disabilities and facial differences get it - sharing stories of intrusiveness that I relate to. I read this great blog about the disability voice - the one we put on when we are offered assistance.
I recall Stella Young saying how a lady offered her help in an airport, and Stella asked "help with what?". She didn't need help reading a book. And the lady responded with "I told you all disabled people were rude." And so it's these assumptions about the help we need or the bad lives we lead, and also our responses that create this cycle of further assumptions about our attitude to this help. Assumptions that disabled people are ungrateful and rude.
Similar to Stella's experience, I once had a woman in a London theatre ask if I wanted a drug to stop me scratching. It was dark, she couldn't see me well, and obviously we did not know eachother. She said she was a doctor. How could I accept that? - she's a stranger to me. I'm allergic to some medication and I wasn't about to rattle off my allergies in whispers during a Queen musical. "I was just trying to help", she sighed. And so my declination of her kind offer made me seem ungrateful.
These questions put us on the spot. They are loaded with the assumptions that we need help (and perhaps pity) when we are really just getting on with our day. And they come with the expectation that it's our job to educate them, and be polite - Every. Single. Time.
It's tricky to respond to well meaning offers. If we decline, no matter how politely, we are seen to be rude, creating a bad experience for someone interacting with a person with a disability. And if we really do need help, like a seat on a train or intervention in an abusive situation, how can we ask for it? And I do try to be friendly, because that's in my nature - when interacting with anyone about topics unrelated to my appearance.
In our Quippings show, we did a word score where we each said a word or phrase related to a theme around disability. One theme was over-niceness - showing examples of well-meaningness. Jarrod's phrase, said with a frustrated tone and gesture, was "I was only trying to help". And that parody is so true. When we talk about these experiences of well-meaning people trying to help us, people respond with "they were only trying to help". When I told the wet wipe woman on the train that it was rude of her to assume things about my appearance, she said she was only trying to help. And so, supposedly, I framed her experience with disability as a bad one.
There's a difference between being uninformed about a disability and intrusiveness and rudeness towards appearance. That comes down to politeness and how people enquire. Start with hello. Don't just launch in. And being mindful that if someone looks different to what you're used to, it probably means they've been asked time and time again about their appearance. (I really liked the comment Stella made in an article - "It doesn't matter how we got like this. Really. If you're just sitting next to one of us on the train, or taking our order at a cafe, you don't actually need to know.")
Strangers' well-meaning, kind intentions are rarely malicious, but even so, it's rude, presumptuous and intrusive (and tiring). We are not here to satisfy someone's good deed or be their conversation starter.
Kindness begins with hello. And then, maybe, you can ask me if I need help.
This piece has since been republished on Daily Life.
29 October 2015
Last month I took a Facebook break. I felt overwhelmed - with online and offline life. I just wanted to escape for a while. I felt suffocated, watched, pounced upon at times, argumentative, lost for and full of words simultaneously, and tired. So tired.
(I want to write about activism burnout in depth soon, but I'm still tired.)
I couldn't pretend that everything is ok when it wasn't.
As an online writer, I put myself out there, addressing (what I and others consider to be important) issues and giving a lot of myself.
These recent months have been really tough and I needed time out, away from the noise, criticism and seemingly never ending issues. It's sometimes thankless and met with a lot of misunderstanding about me. I know I don't have to 'take on' every cause, but when issues around discrimination and exploitation of appearance affect people in my community, they affect me.
It seems relentless - ableist language, lack of solidarity from a support group, misuse of our photos for exploitation, the demonisation of those who dare to speak up, photos of naked children in Facebook groups because people are desperate for medical answers, the misunderstanding of activism from friends, awful behaviour from other bloggers, the high expectations to be on/polite/educating/putting up with at all times, scams to tug at heartstrings and to open wallets...
It's not all bad though. I love what I do. I just can't do it all.
It's funny how words and pictures we scroll our thumbs over can weigh us down. They only exist virtually, but crawl into our hearts and minds, chipping away at our emotions. Tragedy, issues, events and opinions can be burdensome.
During the week off Facebook, I reconnected with life. I read books. Wrote. Watched TV. Caught up on chores. I also was blissfully unaware of all online outrage. When I logged back on, I saw one of the most shared stories was an inspiration porn one, about a disabled man in McDonalds. I was so glad I missed that!
I'm proud of my online writing. I try to work hard at it, research well and talk to lots of people so I can learn and grow. During that week off, lots of friends emailed or texted asked where am I?, concerned and hoping they'd see my musings again soon. It was really nice to know that I (and my writing) was missed - I surely missed my Facebook friends. But the thing that made me smile the most was when a friend texted me asking me to send her a daily photo of what I'm wearing, because she missed my outfits the most.
That week I'd unplugged was so refreshing. My world didn't end. I still kept up with the news, via news websites and Twitter, selecting what I read on my own terms. I didn't get sucked into circular comment wars. When I reconnected, I wrote many words for long form pieces that I'm proud of, and have been even more considered about how I engage on Facebook. I'm not clicking on every link to outrage. If I see an issue that I could weigh in on, I consider the impact it will have on me and the impact I could have on it, and walk away if needed. And those decisions mean I feel lighter.
26 October 2015
The thing about looking different is that people tell you what they really think. Not all of what they say is malicious - it's a case of unthinking behaviour, personal discomfort/projection about someone else looking different or no filter between brain and mouth.
These are three conversations I've had recently.
Lady at bus stop, pulling disgusted face: "Ughhh have you been burnt."
Me: "No. I haven't been, I was born like this. There's no need to pull that face at me."
Lady: "I'm sorry. But you're very attractive though. Very attractive even though you look like you've been burnt."
A couple of months later:
Man on tram, laughing: "you've been covered in blood!"
Me: "No, born like this. Not a Halloween costume."
Man: "sorry, I bet everyone thinks it is."
(I do believe this idea might stem from scary face at Halloween.)
And then, in the same week:
Lady in African restaurant, waving her arms around her face: "what's the significance of this, your face?"
Me: "what do you mean?"
Her: "is it traditional African?"
Me: "it's traditional genetics."
Her: "I've seen pictures of people in Africa who wear makeup like that."
Me, laughing: "I'm sure you have. That's one of the strangest questions I've been asked. And it's rude to just come up and ask a stranger about their appearance."
Her: "Sorry. I don't think it's rude. I was kind of hoping it was traditional makeup. I love it."
Adam: head in hands, bewildered.
(I have South African heritage. Never worn traditional dress.
I was dumbfounded. Like I'd black up to go to an African restaurant (even though I'm part South African, I don't appear that way, nor accentuate racial features). So strange.)
I'm not even making this shit up! These microaaggressions happen to me a lot. I acknowledge they're not discriminatory or upsetting (for me). Others might take these encounters to heart. But they're tiring. And fortunately, laughable (and blog fodder).
I just don't understand how people think it's polite behavior to say stuff like this. And then the conversation gets really awkward because they've interrupted me to discuss my face and how they feel about it. And if I call them out on their rude behaviour, they might perceive all people who look different or with a disability as unapproachable. So ultimately I (perceivably) end up being the rude person because of assertion.
Outsiders (and even insiders - those with my condition) see these encounters as an opportunity educate the ignorant. And while I agree with educating, I maintain that we don't have to be *on* all the time. But then it's assumed that because a number of people welcome that, we ALL do. That we are all ok with questions and comments and education 24/7 if it helps the greater good.
I also believe that people who make such comments - particularly about an appearance being akin to a Halloween costume or feeling sad for someone for looking "unfortunate" might be projecting their own insecurities of what it might be like to look different.
I'm not sure of the response that people expect me to give to make them feel comfortable. It seems that being honest about born like this isn't enough to evoke empathy. It seems that me calling out their rudeness isn't enough for them to realise they are, in fact, being rude.
Are boundaries blurred because of curiosity - and when people are curious, they're not rude, right? Does social media make people feel they have the right to offer an opinion on everything, even in person? Or is it just a case of not engaging the brain before the mouth?
I've discussed the issues of intrusive behaviour and unsolicited comments and questions so much on this blog - and I still have no answers (and still get people telling me I should expect this, and that it's my job to educate all the time). Sometimes I find myself in the most bizarre conversations - defending my appearance and setting someone straight about whats polite behaviour. All I can do is laugh.
23 October 2015
With just under five months to go until the Big Day, wedding planning is in full swing. It certainly helps that I was an event planner for so many years in my day job. I had hoped the wedding stuff would be organised by December, but I think the end of January is more likely. This year has gone so fast! I've been super secretive about the details - there are so many things I want to show you NOW but I will wait until The Big Reveal in March.
I tried on my wedding dress again this month - the first time since I bought it. Really pleased it still fits, considering my love for cake, cheese and wine. Phew! It's perfect.
A talented dressmaker friend came to my house to take my measurements for a bolero she's making me. While I'd love to go sleeveless for the day, it's just not practical. And so lace adds a different texture, with some peeks of skin. Of course I've also bought a warmer little coat because I know I'll be cold! I scored that at a bridal shop that was closing down - 75% off!
And last Thursday night I was a guest of Etsy and Bride's Wedding Trunk Show. I took Cassie, Adam's sister and my bridesmaid. It was so much fun. I'm so lucky to have an amazing woman as my sister in law to be - I love her. We were given gorgeous flower crowns made by Mint and Melon - I wore mine to work the next day!
The trunk show featured 20 Australian and NZ sellers, showcasing their beautiful (and affordable) wedding accessories and stationery.
I am confident that I found my headpiece - again I want to show you everything I'm wearing but you'll have to wait! Here's me wearing a different headpiece - this one (and the other flower accessories) is by La Plume De Fleur.
I'm not having a veil (because it will most likely stick to my face!) but it was SO FUN trying on a veil at the trunk show. Cassis suggested I try one on, and of course I loved the candy pink veil. It was so long - lots of tulle! It sadly won't suit my wedding dress, but it worked really well with my corporate wear, don't you think?! This veil is made by Laced Up With String. Pretty!
On the weekend, I browsed Etsy and found a perfect accessory - a pocket mirror in my exact wedding colours! I've emailed the seller to ask her if she can make some extra accessories for my bridesmaids. Isn't this the prettiest!! The maker is Clay and Chic - she's in Russia.
I love the idea of handmade, but I don't fancy myself as a hand-maker, so Etsy is perfect for me!
Some lovely Facebook followers gave me great advice on wedding lingerie. And on the weekend I took their advice and bought some (Simone Perele)! Corsetry out and comfort in! And it was on sale! Hurrah! The sales assistant at David Jones was so lovely - showed no disinterest or surprise that I was getting married. A great experience.
It's getting so exciting! I've been able to spend the money we've squirrelled away on little purchases to make the big day special. And everyone has been so lovely with their advice and support.
(This post isn't sponsored but I did receive free admission into the Etsy + Bride trunk show - and much sparkling wine and cheese was consumed!)
Are you planning a wedding? Are you having handmade? What do you recommend?
21 October 2015
Last week I saw Turia Pitt speak at a Business Chicks event.
When I got the email from Business Chicks to tell me Turia Pitt was talking at an event, I put off booking a ticket. I wasn't sure if I could afford it, and I'd just started a new job. But she's someone I admire so much, and have been following for two years or so. She's one of my appearance activism heroes. And so I checked with my manager if I could come in half an hour late, reshuffled my funds, and booked it. It's been one of the best investments I've made this year. I am so glad I went to the breakfast event. (I'm a big believer about investing in your own development, and Business Chicks events are a great way to do this!)
In 2011, Turia was badly burnt while running an Ultra marathon in the Kimberly in WA (she endured burns to 65% of her body). She has had more than 200 surgeries including ongoing facial reconstruction. You might remember I wrote about her Women's Weekly cover being a game changer, and then I interviewed her.
During her (far too brief) talk last week, she showed such intelligence. She's funny, unpolished, sweary and lovely. And so very stylish.
(Photo from Business Chicks' newsletter)
Here are 13 things Turia Pitt taught me at Business Chicks. (I love that through hearing others talk, we can learn things about ourselves too.)
1. Turia's appearance alone doesn't make her interesting.
"I find it hard people think I'm interesting because I've been burnt. Truth is, I've always been interesting", Turia said.
2. Humour is everything.
The first time she wiped her own arse after her accident, she felt like she'd won the Olympics, she told us. She's funny. And she sees the funny side. Turia showed us photos of her wearing the compression mask. She laughed, and we laughed, as she showed us her driver's license and passport - her face covered by the mask. She said she could be the world's friendliest terrorist.
3. She is a burns survivor, not a victim.
A woman in the audience asked Turia advice for her young daughter - describing her as a 'burns victim'. Turia answered, saying she is a burns survivor. The audience applauded.
4. Turia wants people to own their appearance diversity.
Her advice to a child who's a burns survivor: "Own it. If you're self conscious, others will notice. Fuck it."
She said that she's embraced her physicality and appearance, and is not letting it stop her enjoying life.
5. She doesn't set out to be an appearance activist.
Turia said she doesn't feel she's a celebrity, and doesn't actively promote positive body image. But it's merely by being, by speaking and showing confidence in herself that she is.
When I interviewed her last year, I asked her whether she hopes that her AWW cover changes the way the media showcases appearance diversity? While she said she was forever grateful to be on the cover of a high circulating magazine, she also told me "Honestly, I haven’t really thought about it." I was surprised at this response then, but when I saw her speak, I realised she's not setting out to be a role model or an example or a change maker, she just is.
A friend recently reminded me to stop and realise there's more to me than my appearance activism crusade, and remember to have balance, and Turia's talk reinforced that for me. Sometimes we can have the most impact by just living our lives.
6. Gratitude is so important.
Turia credits her mother and partner for being with her every step of her journey since the accident. She acknowledged how hard it is for them to see her in pain ("it's traumatic for the people we love to see us go through pain."). She thanked many strangers who did their jobs, risked their lives and gave up their time to save her. She said she feels she has a duty to live life to the fullest to thank and honour everyone who's helped her. She credits her success to everyone who has helped her.
7. There will be bad days, and that's ok.
While she's the fittest she's ever been, and happily engaged, she has bad days.
"I accept life isn't always going to be great. It's ok to own a shit day. Tomorrow's probably gonna be better."
8. She challenges people to grow by getting outside of their comfort zone. (Because that's how she grows.)
"We don't grow & hold onto an outdated version of ourselves 'cause we don't want to evolve or try something new", she says. "It's crazy the excuses people use to keep themselves stuck."
9. She has proven naysayers wrong.
From her highschool teacher who said she wasn't smart enough to do the subjects she chose to a doctor who challenged her during rehab, Turia is using peoples' negativity to drive her success. She says "screw you mate" to those who said she can't.
10. She's living the dream life.
Speaking, doing charity work for Interplast, training for an iron man event, surrounded by amazing people. And she's engaged! She's seen amazing kindness in times of tragedy.
"It's so beautiful. The best in humanity can just show up in the worst moments." She's finished working an engineer, though she's glad to be able to throw that qualification into conversation! Now she loves her new career.
11. Pain is tortuous, and inevitable.
Anticipating the pain has been one of the worst things since her accident.
"Anticipating pain has gotta be the most torturous experience I've ever had", Turia said. She spoke of the fear of bandage changes: lying in a burns ward hearing others having their bandages changed, screaming, made Turia fear her turn. (I could relate to this - anticipating the pain of sore skin is a difficult thing).
12. While she doesn't let the fire define her, she believes her wounds have made her so strong.
"Your wound, your weakness is your biggest strength", Turia said. She said everyone has wounds - they're not just physical - and everyone wears a mask. She doesn't have to wear a mask around her fiancé.
13. Successful people have a team behind them.
Turia has a team behind her. They cheer her on, give her praise and encourage her to be the best she can be. "When you surround yourself with like minded and successful people, anything is possible", she said.
I've seen a few high profile speakers now. Turia Pitt has been my favourite. She is so honest and so lovely. When we met, she gave me a big hug and told the Business Chicks staff that we've been online friends for a year now. It made my day. Thanks Turia!
19 October 2015
The Good GP - crucial for patients with rare medical conditions. (Brought to you by The Royal Australian College of General Practitioners.)
One of the most difficult things about having a rare medical condition is that I feel like a lesson for doctors. I've written previously about how I was involved in medical conferences as a child, and regularly take part in medical exams for dermatology registrars during my hospital appointments as an adult. I've moved from the role of patient to teacher now - educating dermatologists on their training days. I'm constantly explaining what Ichthyosis is, and what the condition means for me.
When I visit a new GP (when my regular one is away, for example), they are often unaware of Ichthyosis. Sometimes they can do no more for me than provide a medical certificate and a prescription for treatment that I've recommended. Or they are so fascinated with my condition they haven't been able to focus on the illness I'm there for.
It's often not practical for me to go to my specialist - which is hospital based, and only available in a clinic a few days a week. Of course, there's the option to go to emergency, but I don't fancy sitting there waiting for five hours.
It's important for me to have a good relationship with a GP, and for them to be knowledgeable about Ichthyosis, as well as putting that aside to give me advice about an unrelated medical condition.
It's pleasing to know the Royal Australian College of General Practitioners (RACGP) is committed to training GPs in specialised medicine. The RACGP ensures industry standards are set, and GPs are supported through continuous training to improve their medical care and knowledge.
The RACGP website lists over 1700 specialised training courses available to GPs - delivered face to face, online, blended learning environments and events around the country
A quick search for dermatology showed me there is a primary care dermatology course available - which is really reassuring for me, and other parents and patients affected by Ichthyosis.
A good GP was crucial for managing my condition when I was a child. I grew up outside of a rural city - bang in the middle of Sydney and Melbourne (each a five-hour drive away). There were no suitable dermatologists in the rural city, and while I went to the wonderful paediatric group, I couldn't see them all the time. And so my parents took me to the GP. I went there when I had colds and sore throats, but also for sore skin. My mum says:
"Although Carly was a very sick baby, we did not visit the GP often. She was in the care of a paediatrician until she was about 18. Most of her illness required specialist…i.e. ENT, Eye Specialists etc. We had a family GP who was great and we made a point to educate him about the Ichthyosis. When she did have to visit the GP it was either for fever/colds and flu. So our experience with the GP was not a difficult one at all."
When I was really little, I was playing in the park and fell on a tap - resulting in a big split of the skin above my eye. Mum panicked, not knowing what this would mean for my Ichthyosis, and she rushed me to the GP. They immediately knew what to do, fixing my face with butterfly strips.
I visited that GP clinic for years - and my parents still visit the clinic. Sadly, the main GP I saw - who still practiced until recently - passed away a few months ago. We all thought so highly of him, it's a big loss to the community.
Having a good local GP saved my parents from asking the paediatric group questions about illnesses unrelated to my skin. The doctors were mindful of my condition while providing the right treatment on each occasion.
I was chatting to some mums of kids with Ichthyosis, and it seems not much has changed. A good GP is still important for treating patients with rare medical conditions. Their comments emphatically said knowledgeable GPs are so important in remote communities.
Cheryle lives in rural Tasmania and has a two-year-old with Ichthyosis. The Royal Children's Hospital - where the specialist (and affordable) dermatology clinic is a plane or boat trip away - and a trip to the hospital can be very expensive when transport, hotels and food are factored in.
Cheryle told me how her local GP has gone out of his way to educate himself about Ichthyosis - including pharmaceutical treatment and interstate treatment options that might benefit her daughter.
"As a carer for a person with Ichthyosis who is too young to have her own voice, having the right fit GP has been invaluable both in terms of medical care and support. I've found my GP has become my medical Advocate for my daughter in a sense", Cheryle says.
"Our current GP has not always treated our family and it took some time to find one who is the right fit. We've gone from a once every 6 months to every second week and he insists if we feel like coming out to touch base with him otherwise he rings every two weeks. This offers me support and a chat with someone who understands."
"His advocacy and support is all I have in a small town where treatment and hospitals are a significant travel and a problem to a little girl who overheats."
Cheryle told me how difficult it was when the regular GP was not there and she saw a difficult GP - one who wasn't aware of Ichthyosis. Her daughter had a common cold, yet the GP lectured Cheryle about the child's redness and suggested Cheryl do more to relieve it.
Cheryle hopes that for GPs in rural areas, there is more incentive for them to train in specialised medicine. For a patient in Tasmania, the travel time, infrequency of transport and cost is prohibitive to seeing a specialist in a main city.
The RACGP website details the support rural GPs receive, including upskilling, grants and fellowships.
Melissa, whose nine-year-old daughter has Netherton's Syndrome (the same type of Ichthyosis as I have) told me about another GP success story.
"My daughter has been very lucky with doctors. Her Paediatrician had told me that there was a chance that she had Netherton's Syndrome the day she was born. He has always been a wealth of knowledge and if he needed extra information he reached out to her dermatologist. My daughter's GP is amazing and works hand in hand with her paediatrician. I will not go to another doctor unless absolutely necessary as I think another doctor will not really understand 9 years of treatments in a 10-minute consultation."
Knowing 90% of Australian GPs are members of RACPG makes me more confident in visiting the GP. The RACGP are responsible for their members professional development, setting industry standards and supporting GP’s by continually evolving and bettering their modern medical care and knowledge. GPs are specialists in whole medicine - knowledgable in 22,000 different illnesses as well as each patient's life history.
It's also such a relief for new parents of children with Ichthyosis - knowing they are supported and understood even when the condition is so rare.
(This post is sponsored by Royal Australian College of General Practitioners.)
Tell me about your experiences with a GP. Do they know about your rare condition? Do you spend a lot of time educating them? Have they suggested new treatments and provided additional support that your specialist hasn't?
17 October 2015
A little vote for a big cause - Kidspot Voices of 2015 Alumni for the Heart and Lung Transplant Trust of Victoria
See those two beautiful ladies either side of me? They're Rebecca and Camille. They're transplant recipients. Generous organ donors gave them new life. Bec had a double lung transplant in September 2012 and Cam had the same in February 2013.
Through the help of the Heart and Lung Transplant Trust (Victoria) Inc (HLTTV), they're able to life a good life - connecting with other transplant recipients, and having access to education and rehabilitation resources. Bec and Cam - and other recipients and families - are members of the HLTTV, ensuring the Trust continues to provide care for future transplant patients and their families.
Here I am with Bec, Cam and Belinda - Belinda's husband had a heart transplant earlier this year and is doing very well.
The HLTTV donated exercise equipment for the Alfred Hosptal rehabilitation gym, refurbished the transplant patient clinic and established a quiet room for patient families. What an awesome cause!
I'm in the running to be named Most Popular Voices of 2015 Alumni, and if I win, I'll get some money for myself, and Kidspot will donate $2500 to HLTTV.
This cause is important to me because it's meant my best friend Cam is alive (and will be my bridesmaid!) and through her I've met Bec and Belinda! Next year, Bec will take part in the Tour De Transplant - a five day, 600 km cycling challenge run by the HLTTV, and Cam regularly takes part in semi marathons. They're tireless campaigners for the Trust - holding regular fundraising events and promoting the cause on social media. Their energy is amazing - and they can do these things because of their transplants.
When I first met Cam, she needed an oxygen tank to breathe. Now she's the busiest woman I know - shopping, exercising, travelling, puppy raising, working, crafting and volunteering for charities - plus bridesmaid duties!
When Bec and I met properly, we shared a dessert - an amazing peach and white chocolate pizza. Look at our faces!
I'm told this money will go a long way at the HLTTV If I win.
#donatelife (and have the chat).
15 October 2015
I've written about getting on and falling off the exercise wagon a few times now. Before I met Adam I was really enjoying it. I was committed - getting up early to use the elliptical trainer at the gym, and I loved the changes to my body. I made modifications to suit my skin. And I was glowing.
But then I found myself without a car, with little time, the endorphins I got through pushing the pain barrier replaced by endorphins of love. Then I went overseas. And I ate. I came back and I ate some more.
I fell deeper in love, content to sit on the couch. I've written more - that never takes place on a treadmill - always in bed!
I got really sore. Last year was one of the sorest of my life.
Since early 2014, I've been to the gym more times to use the shower when mine was broken than to use the equipment. And that shower made my feet sore - I picked up some nasty from the communal recess.
So many excuses (and legitimate reasons) not to move. My metabolism has changed since hitting 30.
And lately, I've felt fat.
I look in the mirror, unhappy with my body, not feeling I'm the right size for me. I've never had this issue until now. I've always been ok with my size and shape.
My skin hurts as it presses against bulging fastenings. My arms wobble and my tummy is far from the toned pride I had in my early 20s.
Fat hasn't been a way I've ever described myself. And I know worth is not determined by dress size or body shape. So with feeling fat, I feel guilty, because I am aware I have thin privilege.
Most sadly, I've been looking at other women and comparing myself - thinking I'm not as slim/toned/gorgeous as them. Which is completely stupid of me because that's not what I'm about. I'm about loving my body and appearance and encouraging others to do the same. I guess I have the same vanity as everyone else.
I've never compared my appearance or been concerned about my size because I thought that was trivial when I had health issues to manage. Plus, I feel comfortable with unconventional beauty. And I feel it's an expectation I am happy with myself, considering I label myself an appearance activist. But now I catch sight of a tummy roll in photos and I want that conventional ideal. Again, the guilt nibbles.
As the reality of fitting into a wedding dress has drawn closer (less than six months!), I know I've got work to do.
All of this negative self talk aside, it's for my own comfort that I need to tone up.
So I've been gently easing back into exercise and eating better. Not back at the gym yet, but once I settle back into my new job and manage my time better, I'll go. I will. I want to feel that rush again, to kick those goals of running through songs and for my skin to glow. I want to have more energy for life. Because burning energy gives me more energy.
This last month I've been on long walks, short runs in my neighbourhood, done lunges and squats in the park and skipped like it was 1989 when I did jump rope for heart. In my previous job, I walked to and from work each day. And I've done incidental exercise, walking to get groceries instead of driving there.
I feel better. Happier about my body, even.
Not liking my body is out of character. I want to look in the mirror and see what my body can do, see tauter skin, and see what Adam loves about it.
I've stocked up on cute active wear - it makes me want to move. Proof looking good can make us feel better about ourselves.
I took a cheeky selfie in my active wear recently, and liked what I saw. My skin was clear and my body felt good - more toned and on the verge of a glow. It's a start.
12 October 2015
It has taken me so long to write this post. Almost two years of processing my feelings and drafting my words. Because the impacts of going viral are both temporary and long lasting.
I want as many people as possible to see my posts. But I would never want to go viral again. Because going viral was not something I was prepared for. And it’s taken a long time to write about, because it affected me more than I imagined.
Going viral is perhaps a goal for bloggers. Most months I see posts in blogging Facebook groups asking how to go viral. I see bloggers actively chasing virality - aiming to be published on viral sites. And I cringe.
Bloggers talk about their Pinterest or blog posts going viral, and I wonder what they define as viral? How many hits? How much of their confidence was shattered? They ask for advice - and others say you can't control virality, it just happens. I offer advice in an attempt to dissuade their wish. You've got to have thick skin to go viral.
I went viral in December 2013. One part of it I had no control over because someone had posted a photo of me on Reddit. And then when I took on the bullies, and wrote about it, my story went public and lots of news outlets wrote about it. I've written and spoken about it a lot, so I won't rehash what happened today. You can go back and read and listen about it via those links.
Done? Read on!
The dark side:
It seems every week there is a new viral sensation online - and most times, the subject is not intending to catapult to fame. As I've experienced, going viral seems to be both a positively surprising and difficult time - a rollercoaster of instant fame and accolades as well as sheer vitriol from keyboard warriors.
The New York Times reported on the sinister side of viral fame, detailing the way 16 year old Alex Lee's life changed in November 2014 when he became #AlexFromTarget. A teenage girl took uploaded of Alex to Tumblr - a photo that was sneakily taken the previous week, with the caption "Yoooooo" and soon his photo went viral - the hashtag was born. While teenage girls threw themselves at him (Alex told the NYT: "I’ve been in the house the entire time," he said. "I’m kind of scared to go in public."), he also received death threats and was called obscene names - his parents feared for his safety.
Alex gained over 500,000 Twitter followers in one day (more than the population of his home town Frisco) - and almost a year on, a mundane tweet stating he's hungry was shared 695 times.
The blog post went viral and was then republished by Mamamia. The views and shares escalated quickly - and she endured callous comments from strangers, especially Thermie fans. In her posts about going viral, she said - a number of times - she found it hard to believe whether it was all even real, consumed by checking stats and screen-shotting them for prosperity. I love how she hasn't taken herself too seriously - in describing the impact of emotional exhaustion, she writes: "And then, the final crash. I curl up in the foetal position on the lounge and fall asleep at 7pm. I am so thoroughly over myself.The post isn’t even that good...I also discovered that I really do prefer obscurity. I don’t know how Kim Kardashian does it."
Here's what it felt like to go viral:
Going viral felt out of control.
While it was exciting to see the blog stats climb (80,000 hits in two days) - and like Melissa, I was constantly checking and screen-shotting them, it wasn’t exciting to wake up to awful comments. Some of the commenters told me that I should be dead. People said whatever they liked because they're not my supporters.
I couldn't control who saw my blog or commented on it or reproduced my story and photos. I couldn't unsee the hate speech and death threats - only passing on the job of comment moderator to Adam - and it wasn't so easy for him to read them either.
New (or voyeuristic) readers had no context about my life and previous writing because they mostly only saw one thing I’d written.
While I do my best to keep aspects of my life private from my blog and social media, those who know me are excited to see me on a website they read and say "she works with me" or "she comes into my shop all the time", and so they reveal more of me than I intend to. This happened a lot after Reddit. My workplace and home suburb was revealed.
Lots of people sent me friend requests and messages in Facebook - some sent me offers for 'cures'.
People who saw how distressed I was told me to switch off the computer. They aren’t digital natives and don’t use the internet as much as me, and they just didn’t understand how it wasn’t easy not to switch off.
The misuse of my photo on Reddit didn’t happen just once. It happened twice more, in murkier depths of Reddit, between Christmas and New Year. In hindsight, it was probably worse than the first time – because the comments became threatening. I was scared for my safety. When you are threatened in the street, you know to call the police. But who do you call when you’re threatened online?
When I commented on the threads, demanding for my photo to be taken down, I was just mocked even further. One moderator told me that Reddit doesn’t own the place the picture was posted to, and so I’d have to contact Imgur. I privately messaged the moderators – and I realised one thing.
Trolling is fueled by a pack mentality. The same moderators who were condoning this stuff on the public forum were apologetic to me in private messages. They felt some sort of compassion I guess, and the photos, comments and then threads were removed. When I tried to raise attention to this, it went unnoticed. People were on holidays, the time I took on Reddit was a week before (and that’s a long time on the internet).
I still get a huge amount of traffic from that post on Reddit, and from some of the stories written about it. Stories about my Reddit experience pop up occasionally - mid 2015 there was a spurt of international coverage, 18 months after the event. Today, the initial post I wrote about Reddit has over 99,000 views - the most viewed of my blog.
It's the story that keeps on giving.
Bullying is a pack mentality, but so is kindness. The amount of support shown soon overtook the amount of negative comments. People killed those trolls comments with kindness. Minds were opened, the Redditors told me so. The media attention and most of the comments was overwhelmingly positive. I've got long term readers since Reddit. And I have been stronger and bolder than ever, writing much more focused content. Because I now know my positive influence.
I want my work to reach as many as possible - I want to influence the way people think about appearance diversity and disability. I want to continue writing and hopefully release a book. Being an online writer And having a social media profile can help me achieve these goals.
But I want my work and writing to reach the right people. Going viral is not the right way to make this happen. Longevity is not 15 minutes of Internet fame.
Internet fame doesn’t last long. For about a week I was that red woman who took on Reddit trolls. And for the rest of the year I was that woman that they’d maybe seen somewhere before…
Ask yourself why you want to go viral? Fame? A measure of success? Can you handle the implications? Can you continue to maintain your profile?
Know that most people who visit your blog (or YouTube or social media platform) at the height of you going viral (when you're at your most contagious?) don't know you. They don't know what you're about and are only judging you from the 500 words you'd written then. They probably won't stick around - but if the nice people do stick around, that's great!
Remember whatever you write online is in the public domain. Your stories and photos are fair game for journalists. You might feature in media outlets you don't read or like. Try to negotiate fees to tell your story on your own terms if this happens.
Going viral does get you noticed. It wasn't all bad for me - I've achieved a lot since. But the attention will fade, and you'll have to continue to work hard to get noticed further.
If going viral happens to you, make sure you've got someone to talk to - someone who understands the online world. Make sure you're not alone through the experience.
Kids Helpline: 1800 55 1800
Have you gone viral? Have you got any advice? Did you orchestrate it or did it happen accidentally?
(There is an edited version of this post on Daily Life.)