22 October 2014

Sore yet so thankful. Online connection - it's a cheer squad.


I was so very sore yesterday. It felt pretty awful. My legs were throbby and weeping and inflamed. I don't know if you know what it feels like to have sore skin. I can't even really explain. It's like my skin is hot and damp, and my limbs are heavy. It feels like my skin is torn. It feels like I can't remember what it's like to not feel pain.

I went to work for a few hours, because a few hours is better than not going at all, and then I went home to bed to sleep. I had an oil and salt bath. And I rested some more. It hurts.

However, I keep saying it, but I feel so lucky for this life! Even during the sore times.

This morning, I'm flying to Sydney to the 100 Women of Influence Awards. I'm worried about flying when my legs are so sore - lucky it's a short flight. I plan to rest up in my hotel room instead of exploring the city this afternoon. Maybe get a manicure if I feel up to it. And then, it's the awards night, a time to dress up and celebrate the way women are changing the world. So excited!

On Monday I was contacted by some former teachers of mine to tell me I will presented with a plaque and my photo hung in the Murray High School 'hall of fame' at the end of the year.

I'm even more excited to be able to talk to the students about appearance diversity and acceptance, and about finding your tribe - a message so important for those who feel alone.

That event will be the first time I've been back to my high school in years. I went on stage to accept various awards, but I'd never spoken to my peers. I always imagined that if I did, I'd be laughed at. Sniggered at. Not paid attention to. Come December, I will have trepidation. School was not a good experience. But it's such a privilege to have a small moment now, as an adult, to address my school. The students aren't my contemporaries, but it will feel like I'm talking to the class of 1999. I've got so much to say.

I just can't believe the life I've created for myself. As Darren Hayes sings, who would have thought it could be this amazing?


Being online so much, and being connected to so many people affected by Ichthyosis, I see so many people who uncertain about their future. It's hard not to take these on as my own worries. I want to let people know they're not alone. I am always quick to welcome someone and offer them an ear - or set of eyes - if they want to talk (or tell their story on my blog).

I understand that parents (and patients) grieve for a life that could have been. I know how hard it is. I know the not knowing. Wondering whether life will ever be 'normal'. Feeling as though they are, or may be, missing out. Resenting the cream and skin that gets everywhere. I've been there. My parents have been there too. I maintain that life with Ichthyosis will be hard, but it can be amazing, if you let it.

I can't promise that it will happen soon, it might take years of feeling lonely and like an outcast (like I did). And it can be physically painful. I don't mind looking different, but what I'd give to have pain free skin. I get it.

When I was laid up in bed yesterday, elevating my legs to reduce the pain, I saw a post from a mother. She worried that her child was missing out, that she would face rejection because she's not like other kids. It saddened me. I wrote back, telling her what life has been like as an adult with Ichthyosis. I said:

I can tell you that life with Ichthyosis is hard, but it can be wonderful. I never feel life I've missed out on things...Things were hard for me, especially at school, I faced a lot of rejection. But they did get better. Your daughter is different to other kids, but she's not missing out if she has the love from her parents and family and friends, and the encouragement that she can do anything she wants to (even if it's a little differently to how others do them). Physical appearance is not the defining feature. What's important is a kind heart, inclusion and good values. If your daughter has these qualities, I am sure she's well on her way to making some strong friendships.

And then a woman who also has Ichthyosis wrote about how she is married with two grown up kids and works as a neuropsychologist. She said "life is what you make it". Yes it is! My friends Hunter and Bailey perform concerts together to raise awareness and funds for Ichthyosis. Mellissa, who I met in San Francisco, is about to have her first baby. Little Evan goes to preschool and LOVES it. Katie is studying to be a nurse, she's recently interned at an African hospital. Jeff is a Cub Scout leader, teaching children life skills and values. Larisa is a teacher. And baby Mason loves to get into mischief. These friends, and many others, are just going about their life, being ordinary through extraordinary circumstances.

This connection we have through the Internet brings a world of support that - sadly - many people never get in person. It's a chance for us to shine, to tell our stories and be ourselves. And we can lean on each other. This online connection is an empathetic cheer squad, a band of security guards ready to tackle any bully we're faced with, a fan club, a mirror to make us see how worthy we are.

When I read stories of little girls being bullied in a dance class because they look different, or little boys being excluded and called names, I leave a message for their parents to pass on, telling them how amazing they are.

Every day I am grateful for the support I get, and I am so glad to see it given to others in similar situations too.

While sometimes people might see me as unrealistically positive, or a little too chipper considering I'm in a lot of pain, or too enthusiastic to want to tell my story to the world, I will continue to let parents and patients know that life with Ichthyosis is hard - it's so damn hard and sometimes it feels like my skin is on fire - but it's amazing.


I made this video last year. I hope it gives you some hope.



20 October 2014

Paint the town Ford: road tripping to the Mornington Peninsula. Win a $500 Temple & Webster voucher.

This post is sponsored by Ford and Kidspot. There's a chance for you to win a $500 Temple and Webster voucher too.

Earlier in the year, my little old reliable 23 year old car went to the wreckers - it died an accidental, premature death. I didn't have a car for quite a while because I went overseas. As serendipity would have it, I was offered a loan of a Ford Ecosport for six weeks.

I was SO EXCITED to be able to drive a brand new car! Living in inner Melbourne, a car has been a nice to have, not a must have. It's not so necessary for me to have anything more than a reliable, safe and economical car as I live so close to public transport and walk around my local area, and now Adam drives me everywhere else. I've had three cars of my own - and they have all been old (one was older than me!). None of them have been fancy. So It was such a novelty when the Ford Ecosport arrived and I didn't even need a key to turn it on!

My first adventure was immediately after I received it. My friend Kate was stranded with a suitcase and a bike! I couldn't let her get home on six wobbly wheels! The bike fit in the back and we had a lovely chat on the drive home.

Her verdict: "everything is intuitive except for unlocking the boot". (That works when you open the driver's door if you're still inside the car, or unlocking it when everyone is out of the car.)

The Ford Ecosport is like a skinny car in a fat car's body (probably like me!). It feels small and zippy to drive, but it sits high enough above the road to give the driver a vast view and a soft ride. Its size is perfect for the city. I admit that I don't drive much but this past month I've had performance rehearsals across town and I didn't even mind sitting in peak hour weekend traffic because the ride was so enjoyable. (What is with peak hour traffic on the weekends?! It's as bad as in the week!)

It's got some other amazing features that I haven't had the privilege of experiencing in a car of my own before:

- Keyless entry (to help when your hands are full) and ignition (this was like real life Beyond 2000! - I just needed to put my foot on the brake and press the Power button to start it!

- A little spot in the car's ceiling to hold sunglasses.

- A shelf in the glove box to hold a small box of tissues, plus the deep part to hold CDs, the manual and other stuff.

- A USB outlet to charge my phone (any phone or music device) and make the songs play through the stereo.

- Reversing sensors and a screen that showed me how close my car's rear end was to the object behind me.

- Auto headlights - great for me who forgets to turn on the headlights in the Burnley tunnel.

- Adjustable seats that could be raised and lowered. I tested out how sleepable the seats were (very!). They reclined nicely.

- A boot big enough to hold a bicycle.

Adam and I went on a road trip to the Mornington Peninsula last weekend so we could explore all features of the car. The weather was perfect for our day out.

I have only been to the Peninsula once before. This time I took the sea views and cute sights along the way. I snapped pics and uploaded them to Instagram, my instafriends giving me advice of where to stop next! We had lunch, looked at galleries and shops and went to a cheesery. We forgot an esky but the car's glove box is cooled so we were able to store the cheeses we bought from Red Hill.

Adam had the chance to test out the sports mode when we took the windy hills overlooking Port Phillip Bay. He liked this feature - he said "it helped me accelerate a bit quicker, helped with the hills, and I didn't have to push the pedal down as far on a steep slope".

I loved the stereo - It's all hands free, controlled by voice command - I just have to say "sync". The sound quality was great and I could play music through the radio or my phone either on BlueTooth or USB. I made my first ever phone all while driving (again, such a novelty!). "Hi Mum! I'm calling you from the Ford! Look, no hands! Gotta take the next exit now! Bye!" And I could adjust the volume of the stereo on the steering wheel. Adam and I did a lot of singing and seat dancing in the Ford - the climax was Shake Your Tail Feather - where bemused onlookers were totally jealous of our dance moves.

It was so nice to get away for the day. Life has been busy, and that outing on a sunny Saturday refreshed us. Having a loan of the Ford Ecosport made me realise that a car is not just for getting from A to B. It's for creating a great journey to get to my destination. Thanks so much Ford and Kidspot.



So now it's your turn. To celebrate me loving this car so much, I'm giving away a $500 Temple and Webster voucher. In 25 words or less, tell me where you'd go on a road trip.

Entry is open to Australian residents only. One entry per person. Entries close on Monday 27 October.



18 October 2014

Sticking my hand in a giant tub of paraffin will probably feel like I'm helping a cow give birth.

I ran some errands this morning - visits to the post office and pharmacy.

The pharmacist made me up a two litre tub of cream (my usual mix of 60% soft white paraffin and 40% liquid paraffin). My tubs are usually 500 grams. This is huge!!

I imagine dipping my hand into this giant tub will feel like a farmer who helps a cow give birth.

Ichthyosis can be messy, itchy, embarassing, inconvenient and can attract stupid comments. Thank goodness for seeing the funny side!

Tell me something funny about your disability or illness?

(Also pictured are some products I use in the bath/shower: table salt for baths (cheap and good for infections), MooGoo eczema and psoriasis cream (I have only used this on my hands), Aquaphor bath wash (DeDe gave it to me in her wonderful houseguest hamper when I was in Connecticut - it's a non creamy bath wash, and a good size for travel - I will reuse the container), and a large pump pack of QV Gentle Wash (I decant this into a smaller bottle and use in the shower - it's a great every day wash, though I prefer MooGoo Mini Bubbly because it's even gentler and leaves the skin in tact when I wash - I don't scrub like many people with Ichthyosis do).

15 October 2014

Reflections on final high school exams, 15 years on.

Final high school exams have started in Australia. I hope the High School Certificate (HSC) students went well with their first exams on Monday.

Please remember your end of school exams aren't the be-all and end-all of your life. There's so much ahead of you. Doing you want to do is a journey, and you don't have to know what that is at such a young age.

I sat my HSC 15 years ago. It was full of humanities subjects - 3 Unit English done in the early morning hours before school officially started, and General Studies instead of Chinese - a subject I'd given up after I couldn't go to China the previous year. I studied Shakespeare and Charlotte Bronte, the impact of the Vietnam war on Australia and John Donne poetry. I did Maths in Society (I did MUCH better at that compared to the advanced maths I'd done in the junior years) and Biology. I also did art, enjoying it so much that I'd applied for Art History at the University of Western Sydney (and got in). I was a very good student but in the end, my HSC was only worth 74.65. Just a number. It doesn't matter now.

Oh I was a dreamer, buried in classic books and poetry, loving history of the world and arts, and thinking too much about bad boys I was chatting to the Internet. Most of my swot-vac was spent writing poetry that was a cross between Douglas Stewart and Silverchair's Neon Ballroom album (I was heavily influenced by the words I studied). I had very few friends. I'd not touched a drop of alcohol, or even kissed a boy more than an apprehensive peck on the lips. I was scrawny and nervous, lonely and creative. That's me up there. I knew there was more for me out of the confines of school.

I didn't get the amazing HSC score I wanted, I didn't go on to do the university degree I had my hopes set on (journalism). I did a Bachelor of eCommerce - in fact I really hated half of the course (the numerical subjects). I had never failed anything until my first year of university. I had also never worked so hard to stay afloat. I was paying for this degree. It was tough.

However, I made some amazing friends at uni and at my part time job, learnt some life and career skills and went on to a stable day job.

And now, I'm doing the stuff I want. I studied journalism after my undergraduate degree. I have a day job and write on the side. I've won some awards, written for some big media outlets, been overseas, lectured at a university, fallen in love. When I sat my HSC I never dreamed I'd be doing exactly what I want 15 years on.

So final year high school students, I implore you not to put too much pressure on yourself. It's just a number. No one cares about what your final mark was 15 years after school. Focus on being a good person and on happiness. Place less emphasis on that golden score. There's always another chance.

If you find yourself doing something you don't love now or next year, trust me, there's plenty of time to work towards doing that thing you do love. You might have to stick it out for a bit, but sticking it out makes finding your way so much sweeter.

Just do your best.

How did you do at school?

Are you now doing what you set out out to do at the end of your schooling?

Have you ever used algebra?


13 October 2014

Recovering from blogger burnout. Losing myself in shaping my blog.

I wrote some of this post, ironically, after I said I need to take a short break from blogging. I was writing again pretty much immediately after pressing publish. I got this amazing comment on my blog, after that post. It spoke to me:

"This is just my opinion, so take it for what it is worth.

Content does not always have to be "research, back linking, proofing, social media promotion" - I'm reading *your* blog, and it is ok to be you. Not some content producing robot. It is ok to just post a photo and/or a quick thought, or a link to something you read which you found interesting.. a memory, a this is what I did today, a recipe you love..

"bloggers are being encouraged to"

And who exactly made that person king of blogging? :) I think "problogging" can be a great thing at times. Sometimes, it can put massive amounts of pressure on people to be a certain way or produce posts which totally and completely bypass the reason we - their readers - loved them in the first place.

I find this seems to happen a lot after "conferences" where people are told all kinds of wonderful things and then they want to come home and put all this stuff they were told into action, and in the process they lose the one thing which most of their readers loved about their blog - themselves. :(

"I want each blog post to move a reader."

And wouldn't that be an exhausting blog to read, not to menton write - for every single post to move your readers. It is ok to move people on an irregular basis. It is ok for moving people to come as a surprise to your people, and not be an expectation for every single post written. I think you want to move people once a week at most, otherwise you'll burn out your readers as well as yourself. :)

Just be you. I like you, for who you are, not the "content" you produce and twist yourself into pretzels to create. Pretzels can be fine, they can be awesome, but if you have them each and every day, you crave icecream, or a macaron, or a cat photo. :)

Do your own thing. Be who you *are* - not who someone else says you should be, not someone you are "encouraged" to be. That is the reason I subscribed to your blog, and I am sure I am not the only one who feels this way."

Thank you so much Snoskred. That comment! I needed it! I get you and agree with you and this is what I wanted to read. Somehow I may have lost myself in shaping the direction of my blog. Somehow I've made myself busier!

I do feel the pressure to write, to perform, and like everything I do in life, I'm a perfectionist. I write for me - and so my theory about perfection vs excellence means I strive for perfection rather than excellence. It's silly isn't it? Feeling the most pressure from ourselves.

I came back from Problogger with so many good ideas. I've already been filling up a notepad, talking to people who can bring these ideas to life. Funnily, many of those don't involve actual blogging. Those ideas are all about blogging, but use the blog as a springboard. And so while I want to focus on building those projects - all will be revealed soon - I need to just be. And I've enjoyed taking some time out, reducing that pressure to have something on the blog every second day.

A blog conference always leads to heightened inspiration - the content coupled with being in the presence of like minded people really does make you realise your potential. But there is overwhelm - of the crowds, the wonderful inspiring speakers, the ideas that you come back with, and also the experience of being away for a weekend. If there was a scale of overwhelm, I'd say this type is at the good end. I'd much rather be overwhelmed with excitement and inspiration than anxiety, fear and idea blockages - but I acknowledge that for many, these conferences might leave them feeling all of those things on the not so great end of the scale. When I got back from Problogger, I did notice bloggers wonder if they fit in; if they're doing it right. The ever lovely Pip Lincolne has some nice advice about how to overcome the overwhelm.

After blog conferences there's a danger of comparing ourselves to each other. The thing for me is that I keep comparing myself to what I've already done and want to do more. I compare myself to my last achievement and want to do more, do better. This is blogger burnout.

While blogging hasn't stopped being fun, the pressure to produce a post - or content as it's known in the industry - is tiring. For now, this isn't a full time job. I've been looking to decrease my day job hours so I can do more of this amazing writing and speaking career. I don't want to just be producing content, because that seems robotic. I want to keep it interesting and topical and continue to educate. But as my dear commenter said, it is ok to move people on an irregular basis.

This isn't a whinge about the sheer volume of wonderful opportunities that have come my way because of blogging. But the input definitely doesn't match the output. I did some invoices in bulk recently and the money I've made in projects away from my blog was more than 10 times the amount I've made through ads and sponsored posts here. It is hard work.

I've also found recently I've began to temper myself more online. The more of a following I have, the more conscious I am about what I'm saying, how I'm presenting myself online. There have been times I've been questioned for having an opinion on experiences and issues - because there's the belief my opinion contradicts my appearance activism.

I don't style my life online, but I am focused on what I write here - trying to ensure I set a good example, that don't contradict what I stand for, and knowing that what I do write may be scrutinised and criticised. But sometimes I will have an opinion that doesn't seem like 'me' - the online Carly that readers are used to seeing online - and that is ok. Please don't be disappointed. Hell, I commented on our Prime Minister's budgie smugglers recently and was hauled over the coals for not being true to my appearance activism work - I was told I was body shaming him. I wasn't.

I read an article about whether personal blogging can survive monetisation and this paragraph resonated with me the most:

"Most of all, when you blog about yourself, you’re putting YOU out there for strangers to judge. Most 99% of the time it’s good. But there will be times when people will judge, say they don’t like what you’re doing, or what you’re wearing and you will have to be tough enough to live with that judgement."

You do have to be tough. It's funny how out of a bajillion lovely comments, the not so nice ones stick.

There are opinions I'd love to share but, for many reasons, I can't. Having an opinion has cost me friends. And truthfully, I'm devastated. Having an online opinion is probably harder than in 'real life' opinions because there's no body language or fluid back and forth conversation for the intention to be interpreted clearly. And it seems that it's more difficult to clear the air in person when communication with them is mostly online. And the worst is when people who don't ordinarily contact me do so just to disagree. I'm all for differing opinions but if a differing opinion is all you're going to offer, then I'm going to feel hurt.

I've recently seen some commentary about blogging (and other issues) online that has caused some heated words. Looking at these examples, and also experiences I've had, I wonder whether we are able to ever ask questions about blogging/bloggers' behaviour/social media online or is this something to ask in person? Does this commentary get more dramatic online because of:

-the chance of misinterpretation

- the length of question and answer

- the pack mentality of the replies

- replying in the heat of the moment

- the ease of typing something compared to talking in person?

I don't know. I do think conversations aboutblogging issues, online behaviour and etiquette need to be had - the more transparently the better, but I question whether having them online all the time is the right platform. (I saw this post about that topic on Facebook - must listen to the podcast soon.)

We're making this blogging business up as we go along. That's how new it is. Sure, there are many experts providing us great advice. But the great thing about blogging and having our own blogs is that it can be anything we want it to be. It's ok to slow down or change direction or only post on Sundays.

Me? I've got to keep telling myself that it's ok not to go at full speed with everything I do. It's ok to let some of the day-to-day posts creep back into this blog. And it's ok not to be liked by everyone. It's good to find myself.





08 October 2014

Building confidence in children with visible differences.

Recently, a friend told me about her son’s reaction to someone commenting inappropriately about his Ichthyosis. She said it was not confident like it would have been a year ago. He looked down on the ground and said nothing. I felt sad for him – and could relate.

Sometimes it seems like the questions we receive about our visible difference can define us. They can make us feel worthless, that we’re no more than a red face, and they can make us feel tired – it’s relentless.

I suggested that she get her son to list all the great, fun and special things about himself, aside from his skin, so he has this list to remember when people question him.

Or better still, organise an after school play session with some of his friends and encourage them to create a collage featuring positive statements about each other.

When I mentored chronically ill young people at a hospital a few years ago, I received a ‘warm fuzzy’ after each camp. Each camp attendant did. Warm fuzzies are books featuring words and pictures from campers about the difference the warm fuzzy recipient made to them.

Camps were often emotional. The young people (and me included) challenged themselves to do physical and emotional activities – high rope climbing, rafting or song writing. Some of the young people were mobility impaired and modifications would be made for them to participate in the physical activities they wouldn’t usually be able to do outside this supervised, accessible environment. It was so wonderful seeing them achieve what seemed like the impossible – swinging on a flying fox or building a hut from scratch. And these achievements made everyone emotional – from the young people, the volunteers and the nurses and doctors who assisted at the camps.

So the messages in the warm fuzzies were often of awe – describing what it was like to see someone achieve a goal or push themselves. These messages remind us we can, when we think we can’t.

I treasure my warm fuzzy books – often reading them when I need a pick-me-up or remember that I’ve made a difference to someone. I know the young people I mentored value their warm fuzzies as much as I do.

Child behaviour consultant and researcher Nathalie Brown says, "Encouraging children to realise the good in themselves when they are different is 24/7. You need to build up their self-esteem as much as you possibly can.

"I love the warm and fuzzy book idea or you can create a book using a display folder that you add to every day. Each page is all about them, things that make them happy, activities they enjoy doing, a list of friends, games they like playing, my wonderful family, things I can do, things I would like to do and so on.

"You also have to speak to them about how others may perceive them as different – because they don’t know any better. And how it may make them feel sad when others say not so nice things or ask questions and how you will help them. The help can involve the school talking about differences and acceptance, talking to the other parents at school and how they can talk to their children about acceptance and kindness, encouraging play dates, finding children with differences to be pen pals with, joining a support group together. But most importantly, not losing sight that they are a child and children thrive on love, empathy and fun."

How do you build confidence in your children?

(This post was originally written for Kidspot.)


06 October 2014

How wonderful life is now that you are in my world.

Today marks exactly one year since Adam contacted me through OK Cupid. I went back through my emails confirming the date - and while I can't see his full message because I no longer have an account, I could see that he told me I seem like a nice person and that he likes my smile. At first - because of a bit of spelling judgement and assertive activism on my part - and some very uneventful dates - I didn't think it would work out between us. But I'm so glad he was tenacious in his perseverance, and I'm so glad I gave him a go.

Every nignt we talk about the best thing about our day. "You", he tells me, without fail. He just has to look at me and I know he loves me.

Love is hard - it takes work. The mundane can detract from the romance. There are compromises and a whole lot of learning for both of us. But it's so worth it. He's my biggest fan, and I'm his. And we've both grown incredibly.

Who would have thought our lives would have changed so much in a year? A proper relationship. An overseas trip. An engagement. A change in jobs for both of us. Moving in together. Just wow.

There will be more anniversaries in the coming weeks. Our first date, our second and third dates. The one where he took my hand and said he was my boyfriend. But today, a year since he sent that hopeful message, marks the moment he came into my life.

How wonderful it is. How lucky we are. This is the love story I've dreamed of being a part in.

Here's his song for me, the one he sent me before we'd even met.


05 October 2014

The Australian Financial Review and Westpac 100 Women of Influence Awards for 2014

I am excited to announce some news - I've been named a winner in the The Australian Financial Review and Westpac 100 Women of Influence Awards for 2014 - it's for my work in promoting appearance diversity through writing and speaking. Read the news story here.

It is an honour to be named as a Westpac Financial Review Woman of Influence - the calibre of women is outstanding. It is great to see the diversity of winners. Many women I admire are current and past year winners - some I am lucky to call friends and mentors. Congratulations to them all.

I have worked hard at blogging and branching out to showcase appearance diversity and promote inclusion. I would like there to be a greater representation of diversity in the media, so we can normalise appearance diversity. Body image and diversity is so much more than fat and thin, and it's so good that powerful women in the media like Turia Pitt, Francesca Martinez and Stella Young are bringing diversity into the mainstream.

I also think blogging is at the forefront of diversity in the media- showcasing all types of people - their image and stories - and I'm so glad to be a part of this. It's so good to be able to make our own media so our stories are told fairly and without exploitation. I'd like wider society to see beauty in those who look different through getting to know their stories.

Thank you to Westpac and the team of judges for recognising me. Thank you to my wonderful online community (especially those people who have contributed guest posts about living with Ichthyosis or a visible difference) and my friends and blog/activism colleagues for helping me on my journey - your support is so appreciated. Thank you to my amazing employer who supports the work I do outside of my day job. And thank you to the people I love the most - Adam and my Mum and Dad - for always being my biggest fans.


Now in its third year, the 100 Women of Influence Awards celebrate outstanding women from a wide variety of sectors across Australia. There are ten categories: Board/Management, Public Policy, Young Leader, Social Enterprise and Not-for-profit, Philanthropy, Global Influence, Innovation, Local/Regional Community, Diversity and Business Enterprise. Entrants into the awards were assessed by a panel of esteemed judges and have been recognised based on their outstanding ability to demonstrate vision, leadership, innovation and action in and beyond their fields.

Gail Kelly, Westpac Group Chief Executive Officer said, "The breadth and calibre of our 100 Women of Influence for 2014 is remarkable.

"It is such a privilege to be able to recognise and celebrate the outstanding contributions these women are making to Australia. The 2014 winners will join the now 300 strong, prestigious alumni of these awards.

"With over 40% of leadership roles at Westpac filled by females, I am fortunate to be surrounded by inspirational women every day. We are blessed to have such great numbers of influential women doing incredible things in many industries and organisations right across Australia", Gail Kelly said.

On Wednesday 22 October, a gala event will be held at Sydney’s Town Hall to celebrate these women and the significant impact that each has made within their chosen field. The ten category winners and overall winner for the year will also be announced on the evening.

For further information please visit: www.100womenofinfluence.com.au.



28 September 2014

Overwhelm. Blogger burnout. Taking a short break.

I currently feel overwhelmed with stuff I have to do. The day job is busy, I'm performing at the Melbourne Fringe Festival this Friday and Saturday, I've got some nights out at the movies and theatre this week, I need to exercise and keep house, and there is a backlog of draft blog posts (and articles) I have to finish. Yesterday I had a three hour nap in the day, and I still went to sleep by 10.00 pm. Life's good, but it's busy.

So this week I can't promise to have anything up on the blog. I've been trying to write two to three posts a week, but by the time I finish at my day job - which is a communication role - my brain is done with the thinky and I just want to zone out.

I'm stealing a few minutes to write this as I feel guilty for the basket of washing that hasn't been folded yet, and wondering how long I can go to the gym for before Fringe Festival rehearsals this afternoon. And then I think, stuff it, I just want to write a few words. While listening to a podcast of course. And the dishwasher is on. I've taken an hour this morning to send off $3500 worth of invoices while eating breakfast. I'm the queen of multitasking.

I was reading an interesting article on blogger burnout last week.

"A tricky thing to avoid as a full-time blogger, considering that the Internet never sleeps, readers want fresh content daily and new social media platforms must be mastered and added to the already demanding workload. Add to that the economic challenges of blogging full time. "

Sometimes I feel this way. Each blog post is more than the writing. There's research, back linking, proofing, social media promotion and something I'm really bad at - replying to the lovely comments.

I feel the pressure to create new and interesting (and good quality) content on a regular basis. I want each blog post to move a reader. I want to write well enough to be republished. I place ridiculous pressure on myself. Of course, the world won't stop if I don't blog, but bloggers are being encouraged to write regularly and consistently so readers know when to expect a new post. I could just get over myself and realise that people aren't relying on my blog, and reassure myself that I will pick up writing again next week - it's my passion, how could I leave it for too long?


I also get this unnecessary worry that the more I write about appearance diversity, the more people will be bored by my incessant activism, or think I'm overreacting. I get messages telling me that I should see each encounter of having my appearance questioned as an opportunity to educate, or that I'm being defensive or that these encounters are not an intrusion but a part of life that I should expect. The truth is, I'd rather educate on my own terms - here - rather than having my day interrupted to satisfy a stranger's curiousity. And that's ok. And I know putting myself out there for comment through this blog is my choice, but I really don't want to be made to feel I'm overreacting or imagining things when I write about them.

Blogging is hard work - it takes time and work to build a community of followers, and while there are infinite topics to write about, my time is finite. I'm tired. So this week I'm going to take a break from the blog. I just don't have the energy to write. You can catch me on Facebook, and Instagram to see what's going on in my life.

Thank you for your constant support, see you in October!

Do you feel burnt out by blogging sometimes? How do you overcome it?



24 September 2014

Unfit. I'm changing that today.

After many, many months of not going to the gym because of not having a car, traveling the world and a long time being sore, I'm taking it up again today.

I feel like a heffalump and need to get my bridal body. I don't weigh myself but my clothes feel uncomfortable on me, and I know it's time. When I was exercising regularly last year and earlier this year I felt the best I'd ever felt.

I've been yearning for the endorphins, for the small achievements of running through a song - and then another one, and before I know it I've done two kilometres. I've wanted glowing skin again. And a flatter tummy. I want to feel good.

And so I go, after work this afternoon. Wish me luck. Here's to social media keeping me accountable! As friends also on the fitness kick tell me, we are in this together.


22 September 2014

Lads' mags and nude films. A lesson in appearance diversity.

Part one

This isn't a piece to examine or to criticise the intent, it's writing out my feelings. It's exploring why I feel this way. I've sought permission from Adam to run this post. It also contains a little nudity.

I don't believe women's bodies should be objectified, and I don't believe men's should be either. I stopped buying women's magazines years ago because there was too much direction of the reader to be something they're not. Get thinner, wear this, make sure you're having sex five times a week to keep your boyfriend, you won't get a boyfriend looking like that, don't eat this, aspire to be like that celebrity. I just wasn't that person women's mags were targeting.

And so I was surprised when I got home to see Zoo Magazine sitting on the coffee table. A bright yellow cover featuring a young woman in a skimpy bikini and maybe a truck and some shouty headlines. I don't know, I didn't look that hard.

"Why is Zoo Magazine here?" I asked.

"I'm going to read it", he said. If I had proper eyebrows, I would have raised them.

"But not for that stuff", he added.

You mean you can read those mags?, I wondered.

I stormed off to the kitchen, giving him the silent treatment while I went to make a potato bake. With cheese and bacon. Clearly to ensure I will never feature on the cover or inside the magazine.

I thought about why I'm angry that there was a Zoo Magazine sitting on our table. Sure he's a man and can watch or read porn if he chooses - perhaps on his own electronic device, away from my eyes. And so can I. But it's confronting to see it sitting on my table among magazines filled with food and journalism and wedding ideas. It's literary snobbery I know. And it felt like an invasion of my space - even though we live together now. But this is mostly about my appearance activism work. And also, my own appearance. I can't be strong all the time.

I want people of all appearances to feel good about themselves, and I want there to be more diversity in the media. These types of magazines aren't representative of diversity.

Zoo Magazine and others goes against everything I believe in. It contains near naked women, airbrushed, posing and portraying a sense of ideal perfection.

Didn't he want to look at me anymore? Why did he need women in a magazine like that?

He's looking at women that I'll never be - taut stomachs, smooth tanned skins, long hair, bikini clad bodies and cosmetically enhanced faces. For a minute I was reminded of that - I didn't feel normal enough. I didn't feel good enough.

And I wondered if my activism work has been enough.

Paper ladies can hurt.

I realise that I'd come across as controlling and slightly overreactive, and perhaps held misinformed prejudice because I really did judge a book (using that term loosely) by its cover, but I wasn't expecting the feeling I'd have when I saw that magazine in my house, bought by my fiancé. Adam and I talked about the Zoo Magazine later that night. His intent was not to disrespect me or other women.

Part two

Fast forward about a month later and I was invited to see Exposed at the Girls on Film Festival. Exposed is a documentary about eight burlesque performers. It's a story of appearance diversity, self acceptance and celebrating difference. It was so good!

I took Adam along, and a few other friends were there - including the director and the publicist of the festival who warned us there was LOTS of nudity and body parts at different angles. I joked to Adam and those around us that this is our first nude film, and I hoped that the winner of the ticket giveaway on my Facebook page would enjoy the film and not hold bad feelings towards me if she was scarred by the content (she loved it! Phew!).

The film contained so much nudity and swinging around of breasts and penises. It was certainly eye opening. However, the burlesque performers in Exposed were not on stage for the male gaze, rather for the universal gaze. They'd created characters that they feel comfortable with, exploring issues wider than just a naked body on stage.

Mat Fraser - an English performer who has a show called The Arms (because of his short arms due to the effects of thalidomide) - spoke about how he is able to push out a political statement by being funny and pushing boundaries of conformity. For years he didn't feel in - until he became a disability activist and then a performer. He said "I became normal by highlighting my difference". And you know, I feel this way too. I feel a part of some incredible communities (the blogging community and the disability community) because of the way I've told my story and highlighted my difference on my own terms.

The World Famous *BOB* (above) - a female drag queen who, for years, identified as a gay male, also spoke about being proud and highlighting difference. She said that women ask her how to conceal cellulite. "How do you hide cellulite? Cover it in glitter and shine a fucking spotlight on it", she said. I love this!

I realised that I was so much more comfortable watching these bodies and sexuality with Adam because the subjects in the film are in control of their appearance. They're proud and empowered and showcase their self professed imperfections - which I call diverse beauty. It was easier to watch than reading the lads magazine due to the diversity within.

Even though more graphic to watch than the content of Zoo Magazine. these people had a purpose of showing off their bodies proudly - even though they didn't fit the mould of perfection. Exposed showed representations of diverse bodies - non normative and non conforming. There was no airbrushing. The performers were in their natural state - laughing, educating and being vulnerable.

While watching Exposed, I was furiously taking notes, thinking back to the day I found the Zoo Magazine. This isn't about who's more of a real woman or degrading their employment choices. The women on those pages must be every bit of in control of their appearance as the burlesque performers. Yet for me, there was something much more powerful seeing the performers in Exposed really owning and loving their image, bringing their identities to life in a three dimensional way, and giving people who don't fit the perceived beauty ideal permission to do the same. I felt connected to these performers, knowing that I'd have a place on 'Misfit Island' (as Exposed performer, Tigger called it) if I wanted, too. I could never be in Zoo Magazine.

* I promised Adam that I owe him a movie of his choice after watching Exposed. His choice. I will sit through anything!


18 September 2014

The SCAR Project. On beauty.

I pinch myself at the opportunities I've had these past few years. It is amazing to be asked to speak or write about what it's like to look difference - to such diverse audiences. On Friday I'm talking on a panel at The SCAR Project in Sydney.

"The National Breast Cancer Foundation (NBCF) is proud to host the Australian premiere of the international exhibition, The SCAR Project, created by fashion photographer David Jay.

The SCAR Project is a series of large scale portraits of young women with breast cancer. The images are unflinching, revealing the raw and honest face of breast cancer. They ask the viewer to reconsider beauty, permanence and the simple but immense power of our daily interactions. Ultimately, The SCAR Project is not about breast cancer, but the human condition itself; the images transcending the disease, illuminating the scars that unite us all."

Here are the details of the session I will be at:

What is Beauty? 19 September, 12.30pm - 2.00pm

Hosted by Eliza O’Hare, Associate Editor at Harper’s BAZAAR and brought to you by Estée Lauder

Exploring different definitions and challenging traditional views of beauty. The discussion will examine how society defines beauty, how beauty is portrayed in the media and the impact this has on society.

RSVP at beauty@nbcf.org.au

Numbers are limited and the session is FREE to attend, with refreshments and food provided.

NOTE: The SCAR Project exhibition is suitable for ages 16 years old and above, at the discretion of parents and guardians

Come along!

I've been thinking a lot about acquired visible difference lately, and the adjustment and grief over losing an appearance one becomes used to. The panellists and I have been asked to talk about our definition of beauty. Here are my thoughts on beauty - you may have read some of this prior, but I wanted to collate some of my thoughts in one small piece:

When I think of beauty, I think of outer appearances and also the mind and heart. Good writing, intelligent thoughts and creativity are as beautiful as a Cupid's bow lip and silky hair. Above all, it's a kind heart that is most beautiful. People get more beautiful the

People don't automatically see the beauty in difference. They stare out of curiosity or confusion or ignorance or disgust. People don't aspire to stand out by their difference - they want to be like the women dancing on MTV or on the covers of magazines. And many young men expect the women they date will look like supermodels. Little girls want to dress and look like Elsa from Frozen - blonde hair and porcelain skin, and a flowing dress. They don't want to look less than a Disney beauty ideal. I wonder if there were more diverse role models in children's cartoons and books, would they be less taken aback by difference, and and more inspired to embrace individuality.

I would like there to be a greater representation of diversity in the media, so we can normalise difference - so that we can see there's beauty in everyone. Body image and diversity is so much more than fat and thin, and it's so good that powerful women in the media like Turia Pitt, Francesca Martinez and Stella Young are bringing diversity into the mainstream. I also think blogging is at the forefront of diversity in the media- showcasing all types of people - their image and stories - and I'm so glad to be a part of this. I'd like girls to know that it is ok to be interested in fashion and taking pride in their appearance even though they have a facial difference or disability. I'd like wider society to see beauty in those who look different.

Lots of people stare at me and ask questions and ridicule. But so many more - the people who matter - see ME.

My love, he's got this joke with me. It's a play on everyone who intrusively asks me about my face.

"What's on your face?", he says.

Then he adds, "Oh it's just beautiful."

And boy do I smile when he says that. I am the luckiest.

I don't need anyone but myself to make me feel happy with my appearance. But it is amazing knowing and seeing how someone else sees me. It's such a joy to love and to be loved. And I love how it shows. This isn't vanity. It's seeing myself as my love sees me. When I see a photo he's taken, I see the beauty he sees in me.

How do you define beauty? Has the definition changed through your life?

15 September 2014

Sliding doors moments.

This post has been in my drafts for more than a year. I am glad to relive these conversations and finally post this. This is a lengthy post about 'sliding doors moments' - you know, the times when you are at a fork in the road and could have chosen left but you went right? How would your life have turned out differently?

It was June 2013 when the Hottest 100 of all time was on Triple J, and friends on Twitter were saying that Twitter makes this countdown more fun. We talked about where we were when songs were released, and how they changed our lives.

I got talking about how I was never into Jeff Buckley because I hadn't heard him, and that I felt like the mid-late 90s was a Savage Garden bubble of fandom for me. It really meant that I wasn't exposed to anything outside of the top 40 on the radio or TV as I would be too busy listening out for Truly Madly Deeply at number 1 (even though I had more than one copy of their CD!). I missed Jeff Buckley. And I know my friends were shocked. I realised that my life might have been different had I discovered Jeff Buckley instead of Savage Garden. Of course I was laughed at for my music choice. It was my musical sliding doors moment.

Silverchair's music contributed to another sliding doors moment - perhaps my biggest decision in my life. I mentioned this at a speech last week, and my current day job manager said he sat there with his head in his hands, shaking his head at my honesty! When I was in my last year of university, I applied for 26 graduate position jobs, all around the East Coast of Australia. I was to move from my small hometown near Albury to a big city of opportunity.

In December of that year, I was offered two jobs - one in Canberra and one in Melbourne. I weighed up my options in a very short timeframe. The Canberra job paid more money at the time, but the living expenses were more expensive and the public transport was limited. Melbourne's job paid slightly less but the public transport was more accessible. There was also the Melbourne lifestyle that appealed to me. I had a few friends there at the time. I knew it well from regular trips to hospital yet I'd only been to Canberra once or twice then.

And the there was this deciding factor. In late 2002 I'd booked tickets to see Silverchair in Melbourne the following April. I worried that if I took the Canberra job, I wouldn't be able to get time off for the concert in Melbourne as I would be new in the role. And so my choice was made. I chose the Melbourne job because of that Silverchair concert. I did get to see them in 2003, it was at the Palais and it was amazing! That was the Across the Night concert, which was a mix of slower Silverchair and the rock they're known for. I also remember a couple of women with massive hair sitting in front of us, obscuring our view. When I was asked by the former head of my organisation why I chose this workplace, I told him the truth, and I think he was very surprised.

I wonder how my life could have been had I moved to Canberra? I wonder. I am so grateful for the life I've built here in Melbourne. Could it have been the same way there?

I think back to my parents - they had to leave South Africa to marry due to Apartheid, and Dad applied to work in Canada and Australia. He said to my Mum, "we're going to Australia to get married." And so they did. What would a Canadian life be like?

After I briefly shared my sliding doors moments on Twitter, I asked my Facebook friends what theirs were. And they shared them for me to blog. I love these. They're truly life changing, life saving. Thank you everyone.

Kathryn: "When I left government style job at legal aid, and went into private practice !!!"

Rebecca: There are many! I was accepted into teaching at Charles Sturt in Wagga but decided to stay in Illawarra for a boyfriend who turned out to be a violent, possessive and crazy so I wonder what would have happened if I'd made the move and become a teacher. Who knows where I'd be now! Also wish I'd travelled more when I was younger. Have to say my path lead me to have my amazing son so he's worth all the bullshit along the way!

Mia: "Everyone has one ... Transfer with my job to New York and work on Wall St. or Work for my Dad ... I chose my Dad, my family. I still choose community over profit."

Jess: "If I had chosen a different path in life, I would not be alive.

At thirteen years old I became life threateningly ill with a chronic illness.

A few years later, I developed Anorexia Nervosa. When the body breaks, so often the mind follows.

I could have continued on the path of self destruction, and starved myself into oblivion. I could have remained angry at what had happened to me, and I could have continued to punish myself for something which I never had a choice in.

I never had a choice in developing a chronic illness, and I never had a choice in developing an Eating Disorder. But I did have a choice in recovering from my Eating Disorder.

I remain Chronically Ill, but I am free of my anorexia.

I am alive.

If I had taken the alternative path, I would not have been here to answer this post.

every single day I am reminded of why the path I chose was the right one xx"

Belinda: "At age 19 I had dreams about moving overseas and working somewhere exciting for a few years. Met a guy while still in Sydney, stayed with him far too long (he was also abusive) and that dream never happened. I wonder what would have happened if i never met that guy...."

Cindy: "selling my hairdressing business and leaving my career to become a disability support worker. I often wonder how much richer I would be or if i'd just be miserable. I love my job now but doesn't pay well. Also if I didn't buy my house, I lost a lot of freedom for it, but gained stability. Lose win or win lose? I was a hairdresser for 14 years before I decided to give it away.. I loved that I made people feel great, but it just wasn't giving me the personal reward I was looking for. I have that now, and I do all my clients hair for them for free. The joy on their faces is irreplaceable.. I have the best of both worlds right now, just poorer! LOL!"

Robert: "The most significant (from which all of my other sliding doors moments in the last decade have derived), was moving to London (although I didn't really fret about that choice at all - there was no alternative in my mind at the time). There was an interesting one when I first arrived in the UK, and was living with some Irish Travellers (gypsies) in Bristol - was with them for 5 days before deciding that London was where I really needed (wanted too, but needed more) to be."

Bianca: "I often wonder what my life might look like had I not met my fiancé five years ago. Before meeting him I had absolutely no direction and a very low opinion of myself. Since meeting him, my life has completely changed. He encouraged me to go back to school and I am currently completing my Masters in Teaching. I'm very thankful that I said yes to that date!"

Michelle: "I wonder what would have happened, had I applied myself to uni the first time around. I would have graduated in 1998, and probably wouldn't have spent 20 years in retail."

Sharnee: "When I was 15 I didn't move to QLD with my boyfriend. (we fell in love at 13). We spoke for months, him singing to me and pleading for me to move up. I wanted to be with him, but I wanted to finish year 10 & 12 and go to uni with the support of my family. We had to let each other go- and move on with our lives. Over a year later (at just 17) I fell pregnant to a new boyfriend. And we created a beautiful family. What would my life had looked like if I had chose to move to QLD... Hmmm I know I would've tried to finish school, but it would've been hard being so young, no licence, no parents, I would've hoped to have gone to uni... But I could've failed to do both...in my dreams I see me playing pro golf with Brett - and him being my caddy."

Rachael: "For me, my friend and I changed the date of our cruise ship holiday and on the holiday we went on I met my now husband! Had we gone on the original dates we had planned, I have no idea where I'd be now.... Funnily enough I wasn't thrilled about changing the dates at the time but now I'm so glad we did because I'm happy with what turned out to be!"

Jean: "When I decided to move interstate to study my dream course, leaving behind close friends, family and bf. Maybe I should've just settled for second best, different career path but possibly more stable and stayed with those I loved."

Lynn: "Choice of two jobs 18 months ago - chose the wrong one I think x"

Khairani: "When Carly asked what my "Sliding Doors" moment was, apart from the fact that chopping off my hair did not lead to my death-slash-the-birth-of-a-child (Late Spoiler Alert!), I would have to say that each and every moment in life could be a sliding door-portal-thingy to another universe entirely. If I brush a mosquito away with my left hand instead of my right, will a snowstorm happen in Ottawa? If you decided to click on a cat video instead of this link, would a chain of events have unfurled that sends you to Mount Kilimanjaro in the next four months? Could we teleport cheaply sooner if we eat more carbs?

This morning, my father excitedly sent the family a link to an article about a "time cloak" invented, that could literally hide data. It made me wonder if the scientists had ever read "A Wrinkle In Time" by Madeleine L’Engle, and if they hadn’t, would their emotional makeup over long nights of researching be different? Would they have had the same children and bought the same car or soy milk brand? Do subatomic ripples effect the whole of life? Yes, yes, and we’ll never know. All to say, vagueness is the stuff the universe is made of. God, or as my friend said last night, "Whatever passes for God" in your universe, is playing it coy, and this means, delightfully, that the human soul is set up to imagine difference and possibility. New haircuts. Bad choices. Sweet music. Empathy. Goodness. Grief. Cheese concoctions.

And take a breath with it now, where you are. Close your eyes. Touch your eyebrows. Now I’m just messing with you… But truly stay in this moment. Choice and fate have quarreled to lead you here, and you are safe, or will be. There is grace here. The seconds run large."

Tenniell: "For me, definitely the way i met my future husband & father to my 4 children ...we met at the skankiest pub in Geelong (my first & only time there) after deciding to go out with my uni mates on less than $20 .. I accidently bumped into him on my way to the toilets & he was just getting to the upstairs landing .. I said "sorry mate" & he replied "you're quiet welcome, don't do it again!" .. throughout that night we kept bumping into eachother in the packed nightclub .. at bar, walking through crowds, etc!! Here's the kicker ... the next fortnight, without any forward plans or interaction, we met again in a different pub, this time I bumped into him as I was leaving the girl's toilets & he was waiting in the que for the men's!! We got chatting, I was on my way back home, he said wait up, ended up doing his wee outside the pub ... I met his best mate that night (who will become our kids godfather!!) ... 13 years later and we're still bestmates!!!"

Cheryl: "About a week after my wedding, I started to have dreams where I said to my Dad just before he walked me down the aisle, "Stop the wedding!" How sad. I'm not sure what I would have done if I hadn't gotten married; I had no other plans. In 1969 you went to college and got married at 20. I did what I was expected to do."

Tamsin: "I have 2 big ones.

1. Agreeing with my boyfriend at the time that I shouldn't try to become a model.

2. Deciding to date the man who is now my husband, even though I'd only been single for 2 weeks after 4 years with the guy from 1.

What would alternate me have looked like? Maybe a model. Maybe a failed model. Maybe with someone else, maybe with the Viking anyway. Who knows..."

Alysha: "Choosing to leave my abusive partner when my son was 6 months old. I'm not sure that I'd still be a functioning human being if I'd stayed. And my beautiful boy certainly would have been a different person if raised in that environment."

Tash: "Looking back, I feel like I have a few moments and decisions in life that could have gone either way, and changed everything if I’d followed the other path. I think the one that stands out the most to me, maybe because I am now middle-aged and single, is choosing my uni dreams over a boy.

I had always dreamed of going to university, in Melbourne, and leaving my home town. This was connected to what I thought I wanted to be when I grew up at the time, and this did not match with what was on offer in my home town university. Although, to be fair, I never actually considered staying in my country town. I had built a whole idea of what life would look like, living and studying in Melbourne, and that dream took hold hard.

But towards the end of Year 12 I met a boy at my part time job, who I still think could have been someone significant in my life. I wonder if I had not had my sights so firmly set on moving to the big city and going to university, whether something significant would have happened with him. Maybe I would have started uni in Melbourne still, but had a reason to return home more often, or transfer to the local university….. Maybe things would have worked out, and I could now be settled down like my peers from high school, with at least two children, and a house in one of the new estates.

But I didn’t let this potential relationship change my path, and this boy and I grew apart, and then lost contact. I met new people, new boy crushes, and followed a much wider study path than I even imagined back at school. So instead of a home selected off a developer’s plans, I am well travelled, well educated, and feel confident that I can work anywhere I want to work, anywhere in the world. But chronically single!

Sometimes I do wonder what happened to that boy, and how very different life would be now if I had followed that other potential path."


I love love LOVE these! Thank you to all of my friends for sharing these personal, intimate and interesting journeys.

What's your sliding doors moment? How has it shaped your life?





12 September 2014

Ichthyosis Awareness: Mark and Hunter's story. "It’s not what you are dealt, but how you deal with what you’ve been dealt."

I've admired Hunter Steinitz for a long time. She's a fantastic role model for young people with Ichthyosis. I'd love to meet her one day. In recent months, I've come to know her Dad, Mark. I love their close relationship, it reminds me of my Dad and I. I asked Mark to tell his and Hunter's story, and I'm so happy he and Hunter agreed.

Meet Mark and Hunter.

"My name is Mark Steinitz. I have a 19 year old daughter named Hunter who is beginning her sophomore year at Westminster College. Like other college students, she isn’t quite sure what her life’s work will be, but has begun her studies as a double major in religion and theater. Not necessarily unusual on its face, however Hunter has Harlequin Ichthyosis, which makes it somewhat unlikely.

As a carefree 39 year old guy, I was thrilled to learn that I was going to be a dad. Patti and I chose to marry and live the family life that we were both familiar with. We could not have known that we were both carriers of a recessive gene. Our combined genetics brought Hunter into this world in the 35th week of pregnancy with a rare skin disorder. Within hours of her birth Patti and I had to consider a do not resuscitate order and quickly arrange for a baptism in the neonatal intensive care unit that we casually toured just weeks before. This wasn’t what I signed up for.

While the folks at Magee-Womens Hospital here in Pittsburgh, Pennsylvania took care of Hunter, at home, Patti and I held each other. I remember sitting on the living room floor with our 10 year old daughter Dana. Comforting each other, we committed to do whatever we need to do to move forward. "One day at a time" became our determined creed.

Hunter beat the odds in those very uncertain early days. The initial milestone on this journey we found ourselves on was the lifting of the order to not resuscitate. After a stay at Transitional Infant Care Center, where we learned how to take care of her, she came home. Unlike today, information about what came next moved at a snail’s pace. Our dermatologist learned of a support group, and Patti went to work. That group, FIRST, the Foundation for Ichthyosis and Related Skin Types became our lifeline. Six months later, leaving Hunter at home, we attended a FIRST Family Conference in San Diego, California.

Families from FIRST provided some best practices to follow. Turning every stare or comment into an opportunity to educate, Patti was determined that Hunter’s education would be a mainstream one from pre-school forward. There were many challenges along the way. The tools we came to know and use, IEP’s, the 504 (editor's note: disability action plans at American schools), up front discussions with teachers and administrators all enabled us to meet each new issue. Every experience along the way put Patti in the position to help other families as we had been helped. Unselfishly she grasped every opportunity. With graduation from high school within sight, good fortune turned on us and we lost Patti to pancreatic cancer in 2011.

Our advice to each other, never give up. It’s not what you are dealt, but how you deal with what you’ve been dealt. Our recovery is ongoing. I’m extremely proud of how Hunter navigated the remainder of her high school days in spite of our loss. She was awarded The Amelia Earhart Scholarship presented by the Zonta Club of Pittsburgh.

"The most difficult thing is the decision to act. The rest is merely tenacity. The fears are paper tigers. You can do anything you decide to do. You can act to change and control your life; and the procedure, the process is its own reward."

- Amelia Earhart.

Hunter has become the voice her mother no longer has. She most recently appeared as a guest on the Katie Couric Show to inspire others, promote FIRST and Westminster College.

We attended the FIRST Family Conference in Indianapolis to once again give back, and upon learning of a family with a newly adopted child with Harlequin Ichthyosis it was her mission to visit them and share her wisdom. I can’t wait to see what comes next."

Watch Hunter on the Katie Couric Show.



10 September 2014

Your curiosity about my appearance doesn't need to be satisfied with an explanation.

It is an interesting (not necessarily comfortable) place to be in - the subject of discussion and speculation. Things like this happen quite regularly, still they never cease to amaze me:

While waiting in a queue at a cafe near work yesterday morning, I heard the baristas say things like "she uses cream because her body produces too much skin", and "we're so excited she's getting married...no, he has normal skin". Of course it caught my attention. I find the language people use interesting. Normal skin.

The baristas were talking to a customer who was so curious about my appearance they asked the baristas about me (when they could have either asked me myself or kept their curiosity to themself). I go to this cafe a lot, and the girls who work there are wonderful - always happy and interested in my wedding plans and they play awesome 90s music.

When I got to the front of the queue, I asked the baristas whether they were talking about me, and they said yes. That customer had the audacity to ask them about me. "Why is her face like that?", they asked. I was especially taken aback about the assumption that I'd be marrying someone else who looks different.

They handled the customer very well. And they also told me they are often asked about me. Who does that?! But we all agreed that what a stranger looks like is none of anyone's damn business. It's certainly not for cafe staff to explain their customer's appearance.

And then we had a laugh. People are intrusive. It is rude to ask someone directly about their appearance. And it's rude to ask someone else about it too. There's an assumption we can't talk for ourselves, or that it'd be more polite not to ask us. I prepared a talk for a conference I am speaking at today, and one of the points I made is let the person with the disability/facial difference lead the conversation. Don't you raise it first.


I ask you to watch a video. I want to show you that what happens to me is not uncommon. Sometimes when I talk about situations like I've mentioned, people try to justify intrusive behaviour. I'm tired of that. This intrusion is real. Unfortunately it's common for those who look different.

"I wanted to stop telling people what happened to me," he says in the video. "I wanted to show people what happened to me."

Just watch this short film by Jonathan Novick.

Before you go to ask someone about their appearance/disability, it's important to consider how many times that person has been asked before. Because it's very tiring. Just because you are curious, it doesn't mean the curiosity needs to be satisfied with an explanation.


08 September 2014

Why did I decide marriage is for me?

A little while ago, I asked you what questions you'd like answered. I got some questions on my blog, Instagram and Facebook. Peter, a friend I met on online dating about two years ago asked me this big questions:

"In this day and age, when there are many happy de facto couples, why have you chosen to get married?"

I can't speak for Adam but I wanted to share my life with someone and have this formally recognised. When Adam asked me to marry him (actually I asked him first - but more on that another time!) I was so excited that we'd be planning this big day and also our lives together.

My parents have been together for 37 years, married for 33 - they've done so well together when so many odds were stacked against them at the start of their relationship. They moved countries to marry.

I also love the idea of a wedding - a big party to show our love and to share it with our families and friends. Of course I know that the wedding day is not as important as marriage itself, but as someone who thought I'd never get married, I want the best party, the most beautiful dress and the funnest celebration ever. This wedding planning thing is so exciting, though we are mindful it's a budget for one day, and not the rest of our lives. On the weekend we set up a high interest joint saver account so we can start saving properly. We don't want to get into a ridiculous debt for a wedding.

Life with Adam has been great - it's nearly a year now and I can't believe the change in me (and him). Who would have thought, hey?!. It's not without challenges though - I have certainly had to adjust living with someone after living alone for so long. But we've kept the same interests, share the bills and have regular date nights. I love cooking for him (not in a subservient way) and he writes me the most romantic cards. It works.

It still surprises me that there was someone out there for me - someone who is so loving, caring and kind. Someone who loves me just like I've always dreamed of. Someone that I could give my love to, too.

Sure we could have stayed a defacto. But it feels so much more special to be married. I'm not religious so I am not getting married because of God's direction. I'm doing it because this feels so very right.

How about you? Married or defacto? Single forever?


06 September 2014

Good blogging is all about love.


I've been hearing a few murmurs of worry amongst the new bloggers. 'Am I doing this right?' 'I don't want to compete, I just want to write for the love of it.' 'When will I be recognised?' 'I feel like I don't fit in.' 'I just can't get the engagement that others have.' A lot of this has stemmed since Problogger, and I think that understandable because there were so many passionate bloggers talking about it all at once, and there were so many messages of how to grow your blog, how to make money and how blogging has moved from solely writing to being on all the social media platforms. (I've encouraged bloggers to write for the love of it, and not to feel pressured by what others are doing. Bloggers blog for man reasons - to make money, to share knowledge. to write and to connect. Blogging can be anything you want it to be.)

The reality of bloggers feeling anxious because they don't feel like they fit in, or a part of a community, or even feeling like they're overlooked (for competitions, brand sponsorships or even just readership) makes meet sad. Because I've felt that way too - in blogging and in other aspects of my life. I wrote this on my Facebook page and wanted to share it here.

(I know I've had a high concentration of blogging posts lately, but I'm just so inspired by Problogger. I will space them out soon.)

Being a blogger is so rewarding. There is readership, friendship, the practice of writing, and some perks. As bloggers, we put our heart and soul into our work - writing, photographing, sharing and connecting. Putting yourself out there is brave and scary and should be noted. For many it costs money to blog - website design and hosting, education courses, travel and tools. These reasons make it hard. It's bloody tough. If can be isolating, competitive, cliquey, costly, overwhelming, pressured, hurtful, tiring and downright dead-ending. And it's constantly changing. I met a ghost blogger last week, who adopts different personas for blogs. What even is this?! I thought!

Sometimes bloggers just don't feel like they're a part of a community. They give and give with little reward - both in terms of community and remuneration. One of my favourite bloggers, Little Wolff, has decided to say goodby to blogging. She feels burnt out. This post made me cry.

I discovered her blog one night last year and devoured it - reading years of archives and commenting on almost each post I read. I love her writing, her view point and her creativity. Her photos are amazing. We've become online friends and I am so thankful for the advice she's given me recently.

While many bloggers (including me) are writing for the love of it, sometimes there is frustration and anxiety about a low readership, about missed opportunities and about not fitting in. I've felt this way.

Good blogging is about the love, as The Everywhereist says. And that love goes both ways as bloggers.

I urge you as bloggers and blog readers to tell your favourite bloggers what they mean to you, and to share your favourite blogs so they have a wider reach. It's easy to drop someone a quick email to tell them. I did this a couple of weeks ago; and the blogger said I made their whole month!!

Bloggers: include new bloggers in the community - if they write to you to tell you you're awesome, take the time to write back. Give them shout outs on your blogs. Recommend them to brands. If you guest blog, even if you're not a blogger, share that post with your online networks. (I admit to being pretty disappointed when someone who wrote a post for me - whose story I was so excited to share and put a lot of effort into doing so - didn't share their guest post on their highly subscribed network.)

And brands/publications: give these smaller bloggers a go. Look at engagement and passion, not just page visits. Take note of their commitment and skill. If they do well on their blog, chances are they'll do well for you. Blogging is more than a hobby now, it's an industry, and for many, it's their main income and creative outlet.

I'm always sad to see a blogger go - many cite giving up blogging is because of lack of time. But it makes me even sadder when it's because they don't feel part of a community.

Do you agree?

I challenge you to give a shoutout to the not so well known bloggers you love in the comments below. I will share each one on my Facebook soon. And let them know they're awesome by leaving them a comment. Let's bring back the community spirit.




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