A hissy fit about the inconvenience of Ichthyosis.

(source)

So here's the thing. Ichthyosis is socially and medically challenging. I don't like to complain about it. But that's the reality of it. It is a bitch to live with. After a minor catastrophe today, I got to thinking...it really is an inconvenient condition.

I was doing my washing today. In Melbourne, it's cold and drizzly - not really washing-drying weather. I have been hanging it up on my clothes horse near the heater. My washing machine stopped before the rinse/drain cycle. So I switched the machine off, and set it to the rinse/drain cycle only. It finished, the door opened, and then I hung my washing up.

I thought my washing machine may be suffering from vaseline/skin build up, so I shook some bi-carb in the barrel and set it on a quick cycle. Only this time, when it stopped mid cycle, the machine would not turn off. I had a look at the manual. It seemed my filter was blocked, so I opened it. Whoosh! A flood of water all over. I swore and cried a little.

My $1400 four month old washing machine may be broken. Fuck. I shall call the company tomorrow. It is under warranty. It was $1400. My return trip to America was $1600...

My previous machine lasted less than four years and five seals and then it had to go.

Other than the washing machine here are the other inconveniences of Ichthyosis. I don't care if these gross you out. I'm the one that has to live with them.

• Skin everywhere. On my carpets, in my bed, on my walls after combing my hair, in the speaker and earpiece bits of my phones, in my keyboard, at work, on my clothes, on other people - eek. It looks a bit like mysterious white powder. Sometimes I try and see whether the bigger pieces resemble countries.
• Vaseline everywhere. See above. Particularly difficult when it's on doorknobs and tiles. And washing machines. It's also a particularly obvious pash-rash on the bloke you've been kissing, particularly if he's prone to a bit of acne.
• The cost. It's around $35 a prescription now. I get 10 kg of customised liquid paraffin/soft-white paraffin (which I refer to as Vaseline, because you're familiar with that, and it doesn't seem like I am fueling a hot air balloon, yep) and this lasts around three weeks. When I go overseas, I will need to take 20 kg of the slippery stuff and may have to get it over two scripts. Then there's the antiobiotics, shower and bath stuff and shampoo that is not just off the shelf, antihisthamines, pain killers and bandages. That's a lot of money. There are other products I could use, but I simply can't afford to. There needs to be better financial support for people with chronic illnesses who work full time. A health care card would be nice. I'm talking to YOU, Australian Government.
• The temperature thing. I am usually cold. Even on warm days. And when it's over 30 degrees, I can't cope. I get a few people being judgey about my temperature. "But you're ALWAYS cold, your thermostat is silly". Yes, yes it is. But I can't help for it. It is particularly difficult when people want to sit outside and I am too hot or too cold for it, or it is too sunny or windy for me. And it's very difficult being in the company of a menopausal woman. She just wants the window open and the aircon on ALL THE TIME. Not ageist, just writing from experience.
• Not having eyebrows and eyelashes. Other than the lack of framing of my face (and this beautiful face ought to be framed) a lack of brows and lashes means that lots of stuff gets in my eyes. Dust. Hair. Dirt. On the upside, I don't have ANY body hair, and I save a bit on beautician stuff. Win. Ish.
• The pain. When it hurts to stand, sit, have blankets on, when my legs are hit by my shopping bags or someone else's body or belongings, when I bump into things, when I accidentally scratch myself so I bleed, when someone else accidentally scratches me. The pain... And the time off work because of the pain.
• The time it takes to get ready. I have cut down my preparation time a great deal. I can get ready in half an hour now. But it I want to look really fabulous, it takes time. There's the showering, washing face, putting cream on my whole body, walking around naked a bit til it soaks in, patting the excess off, getting dressed (sometimes carefully), combing scale from scalp, doing hair, smoothing Vaseline on face... Sometimes I will get ready in the early afternoon so I am less red for going out at night. I was listening to an interview with a man who has a similar condition, and he said it takes him three hours to get ready. If he has to be ready for a 9 am appointment, he will get up at 4.30 am! NOW THAT'S INCONVENIENT and a lot of time taken to get ready, and he's not even a woman!
• The whole looking different thing. Think of the time when you walked out of the house with your skirt tucked into your undies, or got a particularly bad case of sunburn. Or when you dated a Really Attractive Person. The sniggers. The questions. The turns of the head. The gaping jaws. That's my life.

Look I'm not going going to be a sad sack.I'm not asking for sympathy. But sometimes days are really shitty. Like today. Fingers crossed the washing machine is fixed soon and without cost. Though I guess it's really lucky that I have enough clothes to see me through an apocalypse.

PS: May is Ichthyosis Awareness Month. The Foundation of Ichthyosis and Related Skin Types (FIRST) is doing a great job in promoting it. Visit FIRST for more information.

Seeing a different picture

"The more you praise and celebrate your life, the more there is in life to celebrate."
~ Oprah Winfrey

When I doubt myself it's usually in the midst of success. Am I really doing enough? Can I do better? Am I the right person for this? Am I still allowed to have my own thoughts about disability when I am involved in the disability community? Am I really a writer? Am I really chronically ill enough? Is my appearance defining me?

(Do other writers feel this way? Or people with chronic illnesses and disabilities? Do you feel a bit fraudulent, that one day someone will discover that you're really just winging it?)

And then I tell myself to toughen up, Princess. None of this would be without hard work. And sometimes it takes another's perspective to make you see your worth. To make you see a different picture to what you've come to know of yourself - like that gorgeous picture above.

Lots has happened in the past few weeks - more writing, more recognition. Being published on The Punch and JustB, modelling on Mamamai and the Best Blogs finalist announcement. Wow. I can't say I haven't enjoyed it. I'm living my dream of being a writer. But there's always that niggle, that doubt that I am not good enough.

And then I realise - after reflection on why I blog for my thesis and a chat with two very smart creative friends - that, as I wrote here, I am running my own race. And, because I want to pack the most into life, I'm putting on some proper running shoes.

I've been worried I talk myself up too much. I mean, I am modest, but I want to speak about my achievements so they are more real. I've been reading this in literature about blogging for my thesis - that some people blog to record that their lives are actually happening, that they are really living. I'd say that's true of myself. One thing I have learnt to do though, is to only speak about my achievements to those who matter, to those who care.

My friend (one of those creative, smart women above) and I went to the RMIT SEEDS public lecture this week - it was a discussion among women in social enterprise. It was so inspiring, and I took a few things away from the conversation. Three things that I will employ in my own career.

"People don't buy what you do, they buy why you do it" ~ Hayley Morris - founding director of Sustainable Table

This statement reinforced to me that it's ok to be myself and do what I am doing, and that's why my readers come back. And it reminded me to keep being passionate. It doesn't matter that not everyone is passionate about blogging or appearance. What matters are those people who share my passion and enthusiasm, and get excited with me.

"We can't sell out to the corporates! Well yes we can! Take their money and do good!" ~ Sally Quinn, co-founder of Green Collect

I'm going to do take up some advertising offers - but I won't compromise my values. When I'm done writing my thesis, I will be more confident and submit my writing to publications that pay. I don't need to only write about disability and appearance either. I'm going to write about what matters to me.

And finally, a question I asked at the lecture...

"When do you know when to jump from the job that pays you to your passion?"

When? I like my day job. It pays. But what I really love, and my managers know this, is all the stuff I do outside of work. I registered myself as a 'professional artist' with the Tax Man so I can start earning some proper money from this caper. It's no longer a hobby - how can it be when I put in 20 hours a week in writing outside my day job? I've sent off my media kit to five companies this week, and enquired about some payment that I should receive for an article that I wrote last year. Like Eden, Zoey and Veronica wrote about recently, I want to be valued more as a blogger. I want to be a Blogger. Maybe even a BLOGGER (to quote Eden). Maybe I'll be able to make that leap, rung by financial rung.


There are no certainties. But there are opportunities. I received the draft academic program for the Appearance Matters conference in the UK this week. The topics look so interesting. I have already printed off the program and highlighted the sessions I want to go to. My trip is becoming real now.

Today I think I'm in my local hometown newspaper - the one I did work experience at when I was 16. My supervisor back then interviewed me earlier in the week. It may be online, so if it is I'll link to it, and if not, I'll see if I can get a PDF copy and upload here. For now, clickety click for the pic.

When I read the copy of the story - which was really nice, celebrating my finalist place in Best Blogs - don't forget to vote for me in the People's Choice! - I thought about this: Would I really have a story if it wasn't for my appearance and chronic illness? Perhaps. I don't know. And I thought, there is a tough balance between telling the story of my achievements and telling the story of my appearance and illness. Maybe. But it's inevitable. I am always going to prefer telling my story about my appeance out of choice rather than being asked about it by a stranger. But people are going to ask questions. That's inevitable too. And lots of people are going to see that I'm doing great things, that I am celebrating my life and mention my achievements alongside my appearance.

And all I can do is tell my story the best I can. With honesty, integrity and humour. My (day job) manager (I can't afford to have a writing manager yet - but god I'd love an intern to make calls and sort emails!) held up my business card today, when I was telling her this, and pointed out that I am, after all, an appearance activist. I make people think about what it's like to look so visibly different, and I don't really have a choice in that.

Sometimes it takes a conversation or a thought from another person, or even someone else telling your story, to make you see that different picture of yourself.

On being a fan - part 2

Two of my favourite musos, Steve Poltz and Bob Evans (Kevin Mitchell from Jebediah), coming together and saying hello to me in a tweet.

I love being a fan ♥

To read On being a fan part 1, go here.

Blogging at JustB: Five things I wish I'd known at fifteen

I am blogging over at JustB! Pip put together a pretty collage of my pics - I love it!

I have written the five things I wish I'd known at fifteen.

Pop over to read what I have to say, and explore the fab JustB site.

 Thanks for having me, JustB!

Blogging Against Disablism Day

On Sunday night I was alerted to Blogging Against Disablism Day via a tweet. Disables is discrimination against people with disability. The event is being run by Diaryof a Goldfish. You can get involved by blogging, on Twitter (theTwitter account is @BADDtweetsand the hashtag is #BADD2012) and sharing the posts about Blogging Against Disablism.

“The seventh annual Blogging Against Disablism day will be on Tuesday, 1st May. This is the day where all around the world, disabled and non-disabled people blog about their experiences, observations and thoughts about disability discrimination. In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we've made.”

The internet can be used for evil. Especially toward minority groups – there is a lot of online bullying by anonymous trolls.

The other day I saw a news article online about a young girl with Downs syndrome whose photo had been used in a cruel internet meme making fun of people with disabilities. While the news article covered this in a compassionate way, some of the comments didn’t, and were equally as offensive as the original meme.

I have also seen pictures of children with disabilities circulated on Facebook with the caption “like if you feel sorry for this baby” or “like if you think she is beautiful”. Again, the majority of the comments are discriminatory and offensive.

Pretty disgusting. And these meme and photo taunts spread virally. I am not going to link to the articles and pictures, I am sure you've seen them or similar.

However, the internet can be used for so much good. Blogging is a brilliant way to stamp out disablism.

Sometimes I feel like a bit of a fraud when people call me an activist or advocate. I am merely sharing my own experiences, and sometimes I feel I don't feel I know enough about disability or am not disabled enough to be an activist or advocate. So for this blogging event, I want to share some other fabulous bloggers who are doing their bit to raise awareness and change attitudes about disabilities.

Here are a few websites that I would love you to visit. These are every day people doing extraordinary things.

Avery's Bucket List – Baby Avery was born in November 2011 and at the beginning of April was diagnosed with Spinal Muscular Atrophy (SMA). It is not expected for her to live past 18 months old. Avery has a blog where “she tells” her story of ticking things off her bucket list. Her blog – written from the perspective of a baby, is very funny, and very uplifting. So far Avery has been kissed by an older boy, been to a sporting match at a stadium, eaten a cupcake, been recognised by a fan AND received her first tattoo of a Hello Kitty. Her blog raises awareness about SMA and asks for donations to help her achieve her bucket list and raise money for SMA research. Avery’s Bucket List is a beautiful read.

Living with Bob – Michelle writes about the challenges she faces living with Dysautonomia. One of the powerful posts Michelle wrote recently was to draw attention to a disablist Facebook group that was discriminating against people with disabilities using disabled parking spaces. Because Hate Is Not Hilarious. With the help of this post, she and her readers reported the Facebook group and had it closed down.

AutismOur Words – a site created by a number of mums, sharing their stories of having children with autism, and inviting others to do the same. The site is brand spanking, and I think they've done a great job to raise awareness and help others tell their stories.

And lastly there's this beautiful post by Magneto Bold Too. She writes about it being ok not to know what to say. It really moved me, and that is a sign of great writing. (Sorry I can't do a proper link - I'm updating on my phone.) http://magnetoboldtoo.com/2012/04/30/its-ok/

Please stop by to look at the blogsI've mentioned. And remember, disability is about all of us – it's about changing the way society treats people with disabilities, and changing attitudes towards them. Make a difference, blog against disablism.

fly

Steve Poltz at Riverview Footscray - again!

I was hanging out for Friday night like you wouldn't believe. It was the first of two Steve Poltz gigs I was attending on his Australian tour. And it was a chance for me to celebrate my Best Blogs finalist placement. A few drinks were in order. An early start at work, then 4:30 drinks with the work girls, a quick shower and outfit change and then I taxied it to the Riverview Function Centre in Footscray. How exciting to see a gig so close to home! The function centre overlooks the Maribyrnong River and faces the city skyline - a beautiful sight at night - neon and sparking on the water.

My friend and I sat on a table with Steve's manager Chris Modl, his graphic designer and music journalist Paul Cashmere (I was kind of in awe, having read Undercover since way back when I was 15, and now Noise 11) and his wife and another photographer. We chatted about The Voice and accommodation recommendations in Los Angeles and Instagram (we are all addicted).

Matt from Riverview put on a San Diego feast - well priced food and beer, inspired by Steve Poltz's home town in California. I ate like a lumberjack, and the others on the table were impressed. Two fish tacos, two beef burritoes with guacomole, salsa and slaw, and later on a flan (or "flaarrrn" as Steve Poltz pronounces it!). So yum!
Jessica Paige opened the show, like last time. A beautiful voice and melancholy songs, though she ended on Here Comes the Sun which was delightful.

When Steve Poltz came out, we moved to the front row. I like to view bands from the front row, though this proved to make me blush on Friday night as Steve pointed me out quite a few times! And it takes a lot for me to physically blush as you can imagine! He asked me how I was, and I managed a girly giggle, and it was all laughs from there. He used my name in a song, and rhymed blogging with jogging and eggnogging, and didn't expect me to request Handjob on a church bus - "but I want to do the actions" I said!

 

He played a lot of songs from his new album Noineen Noinee Noin - the title playfully mocks the Australian accent, and refers to a conversation Steve had on his first trip to Australia with Jewel in 1998 (noineen noinee ate?). His songs at this show were quite romantic, and again, so beautiful on the guitar. He is so passionate about his music, and you can really see it in his facial expressions that he loves playing. He did play a few classics: Silver Lining, Cold German, my request, and the Rugburns' favourite Fairies. I like his improv - when he singled out a couple in the small audience and commented on their love for each other, and when he pointed out ladies who were "the most improved" for their handjob actions. I also loved the voice alteration tool - so clever how he makes music with his voice alone.

Again, he stopped to chat for ages after the show. Such a lovely guy. I am seeing him again at the Northcote Social Club on Thursday, and he's also playing at Ruby's in Belgrave on Wednesday.

Thanks for coming Steve, you always make me happy!

Supermodelling over at Mamamia!

I am over on Mamamia today, being a supermodel. Back in December last year, the lovely Lucy from the editorial team at MM sent me an email asking me to send in some pictures of the outfits I wear for a new feature on the site - Wardrobe Week. I was flattered.

Wardrobe Week is about real people wearing real clothes. It is this diversity in fashion media that I like. Diversity and body image is so much more than fat vs thin and it is great to see Mia Freedman and her team supporting this - and the MM readers asking for more.

And so Camille from CurlyPops offered to take some photos of me with her good camera against a white wall. I love how they turned out, and dressing up was so much fun.

Pop on over to Mamamia to check out what me and some other gorgeous women are wearing.

A thousand words.

Popularity contest

When I was at school, I never won the popularity contest. Girls didn't want me in their cliques, and boys didn't want to hold my hand during the barn dance. I wasn't cool. For some reason, I raised the topic of Dolly Model of the Year competition with a girl at highschool. Because back then, in year nine, looks were everything. Of course they were, when all I wanted to do is be accepted for the way I look. I said that I couldn't enter the modeling competition because I was too short. She said I couldn't enter the modeling competition because I was too red. "And you'd have to chop all your skin off anyway" she told me. Yep. Because chopping off my skin would leave me dead. So dead girls can enter modeling competitions, but red girls can't? Makes sense. People are dumb.

I've been doing a lot of research for my Masters of Communication thesis. My thesis is about blogging - specifically my own blog, and how it has shaped my identity. I've read literature by academics - the motives for blogging, how blogging is "empowered exhibitionism" and how it "evokes sympathy" in the readers (yes and yes). I've read my own blog entries - the pivotal ones that have been written after an event or impacted my life in some way (and these blog entries usually fall into both categories). Autoethnography as a research method is pretty narcissistic, but then again so is blogging. And I write what I know, so it makes sense to research what I know.

Anyway, through my research, and discussions with my thesis supervisor, I have come to realise that so many of my blog entries have shaped my identity and paved my way. Since I've had my blog, it is the most comfortable I've ever felt with myself. The work I've put into the writing on my blog is the same type and level of work I've put into my day job, my volunteer work at the hospital and on TV and freelance work (though writing could be classed as volunteer work too, because so much of it is unpaid!). It's helped me find myself and validate myself to an extent. And having this blog has made me find amazing people - online and in real life. Wait! Blogging is in real life! It is as valid as the conversations we have on the phone or over a cup of tea. It's as valid as a journal. It's more real than watching a soap opera. The community generated by blogging is warm and embracing and supportive - for the most part. And blogging is one of the best ways to get writing out for the world to see. Most importantly, my blog allows me to be me, finally.

So when the finalists for the Sydney Writer's Centre Best Australian Blogs 2012 competition were announced yesterday, I held my breath. I wondered if I would be a finalist again. Between reading academic literature, I refreshed the browser and updated my Twitter feed.

Turns out, the judges like me. I am a finalist in the personal/lifestyle blogs category. Along with some amazing writers. Amazing writers. And what's more, supermodel and writer, Tara Moss, is a finalist in the words category. So, take that year nine girl - I am getting my chance to shine against a model! Winners are announced on 10 May 2012.

When I first started out blogging, way back in 2000, I was 18. I didn't put my name to my blog, nor my face. It was a Diaryland platform and I don't even think Diaryland exists anymore. Then I moved onto Deviantart, Blogsome as a uni new media assignment, and then MySpace. I started Tune into Radio Carly in December 2009. My first posts on this blog weren't that great. I didn't expect much. But my motivators were to develop and improve my writing and become a part of the blogging community - that for a while, I was just a spectator in via reading blogs and tweeting to bloggers.

And now, wow. It's given me so much. A voice to help educate people a little. A passion. New friends. Confidence. Improved skills in writing, photography (if you count iPhoneography), observation and self promotion. It's also given me the ability to be introspective and reflective, and write out my thoughts. Sometimes it's hard to be 'on' all the time as a blogger. People expect a lot of you, particularly if you stand for some sort of cause. I try my best to represent well, but in the end, I'm just me, having opinions and making mistakes like everyone else. As for the criticism - it can be tough, but I get more walking down the street than online. It's nice to be sort of popular.

I was nominated for this Best Australian Blogs competition by someone I don't know. Thank you, whoever you are.

Thank you to the Sydney Writers Centre for judging me as worthy. It is nice to be recognised as a real writer and included in this list.

Thank you to everyone who comes to read this blog, those who leave comments here, who share my links and who join in the discussion on Facebook and Twitter.

Thank you to the beautiful friends I've met through blogging - those who I've met in person and over the screen, you're wonderful.

Thank you to the wonderful bloggers who make me want to be a better blogger. I admire your writing, your honesty and your lives so much.

Thank you to my parents who are my best publicists (would you believe that they met someone in a Flinders Island (off Tasmania) pub who reads my blog?! - it came up in conversation as Mum's into giving randoms my business card!) and my friends and colleagues in real life who support me (and probably roll their eyes at my passion!).

Thank you to my hospital team who are more than just skin specialists - they're an ear and a laugh, and are now convinced that putting a picture of myself on my blog was for the best. And they believe in me so much that they're helping me get to the UK to speak at Appearance Matters! Now that's a brilliant sponsorship of sorts!

Thanks to the Layne Beachley Aim for the Stars Foundation for helping me out too - so exciting to be a grant recipient.

Thank you to that boy for breaking my heart several times (and for giving me permission to write about it!).

And thank you to anyone who has ever doubted, teased, patronised, harassed or insulted me for how I look.

Thank you for believing in me.

(Should I ever win an Oscar, that will be my speech. How very Gwynneth.)

If this hasn't convinced you about the power of blogging, wait til you read my thesis. It's due in on 11 June. ;)

Lastly - I don't think blogging, nor this competition, is a popularity contest unless you let it be. Yes, this competition is one that is judged by writing experts and the peoples' choice is, er, voted by the people (and you can vote for me here). But blogging's about writing. It's about sharing stories and photos. Being authentic. Having a voice. Making a difference. Amongst the blogging community, I believe we're all running our own race. To be the best we can be at our own measure. To write the best we possibly can.

A poem by my grandfather

On Monday my paternal grandfather, aged 91, went to palliative care. He's not been well for a few months now, going in and out of hospital with various illnesses. My Mum called me to tell me these may be his last days. As I write this, he is comfortable, free from pain, and the nurses tell me he is alert and doing well despite being incoherent. Those terms, comfortable, free from pain and palliative care, are daunting. They are the terms to describe the end of days. It feels strange to literally take each day at a time.

If he was well enough, he'd be attending an ANZAC Day ceremony today. He and my grandmother served in the Second World War. Years ago we used to march in the same ANZAC Day parade in my home town. He'd be marching with the war veterans and I'd march with the Brownies or my school.

In all honesty, my grandfather and I aren't close. He gave me a book of his poems, and I have read some of them in the past day or so. He's a great writer. I wanted to share one of his poems here. Maybe I'll share more one day.

Life is wonderful

Yesterday's gone
into history now,
and if all my horoscopes
sand money was about
then Fortune was joking,
because if Yesterday
was living, then
Yesterday was terrible.
But Today is different,
Today is a promise
of what is going
to happen to me today
and hasn't happened yet.

All the while while I am
living today,
I will be thinking:
there is Life,
there is a promise,
and there is Hope,
and today
could be wonderful.

-
I know that he will get good care in the hospital. He's had a very long life, and I hope this time for him is peaceful. Through reading his poetry, I've discovered a man I've never known.

Need.

"I've stuck around, through thick and through thin
You cannot deny, I've always been in
But I've watched you stand, still as a snowman
But I don't see you change, you're always at meltdown

Yeah I've been your crutch, your smell sight and touch
Yeah I took you home when you've drunk too much
But I can't survive, with you by my side
See I'll never get laid, while I'm running your life"

~Sia, The girl you lost to cocaine

I finished my bottle of Frangelico now. I've had it in my cupboard for 18 months. There was no other alcohol in the house and I wanted a wind down drink at the end of the week.

The bottle's lid has got his teeth marks in it - from when he opened it for me. It was the bottle he bought me after he drank most of the first one I bought for myself. He drank about three quarters of it straight, after around 15 bottles of beer. Well that's how many I counted when I put them in the recycling the next afternoon, right before he started on 10 more bottles. That Frangelico was from the last time since. Since everything. It carries too many memories for me. I never get that nostalgic when I have a glass of Frangelico, lemonade and lime at the pub.

I never noticed how drunk he was. I had drunk a lot on our first night too - a bottle of wine and a quarter of the first bottle of Frangelico - though I was still in control. I guess it was nerve calming, passion fueling, confidence boosting. We were both as shy as each other. The amount of drink he consumed alarmed me, but his behaviour didn't seem seem extreme. Not even when he stepped back and fell on the heater as we were making the bed. I reached out to pull him up, worried he had hurt himself on the grill. He didn't feel it. He was most proud he'd fallen with his beer upright. In the morning, I showed him the burn marks on his ribs. He didn't remember the fall. I guessed he had a high tolerance to alcohol.

When he told me he had gone to rehab last year, and then to psychiatric care, he said he was determined to give up the alcohol. He wanted to change his life. He did with the help of counseling and medication and some temperamental willpower. It was hard reading his words. There were so many of them and I was hurting for him. He'd tell me his darkest thoughts. But there was progress too.

When I spoke to him at his most desperate, he'd been drinking again after six weeks of abstinence. He sounded so desperate, so sad. He got some proper help, again.

His medication kicked in. We continued to send long messages to eachother about everything. Mainly about how he was feeling, and how pleased I was about his progress, and sometimes he told me about how he regretted losing me for a while. I liked this 'new' person. The gold I saw shining from him since I first came to know him again was shining the brightest then. I loved him again. I hadn't stopped loving him. And he needed me again. The written word between us was as powerful as our embrace.

I told the counselor that I felt guilty about wanting to feel needed by him, and feeling useful, especially at his most vulnerable. The counselor told me that the desire to feel needed is natural and if I felt I was getting something from this relationship, then it was ok. My second greatest fear was that one day he'd no longer need me.

And then it all fell apart. He met her and things couldn't be the same between us. Of course we won't still be friends. Or whatever the hell we were. I was no longer needed.

I said to my mum that one of the things that upset me most was that I never spoke to him on the phone or in person sober. That really hurt. Especially knowing how happy he was, sober, loving his new life and love, and knowing that I couldn't share in that.

The situation changed so quickly that I experienced grief. Gone were the long emails and texts. Gone were the moments he made me smile and cry at the same time. From then it was just tears. He had used me in one of the worst ways possible.

I worried that I was as addicted to contact with him as he was to drugs and alcohol. Was I? Was I experiencing the same depression as him, if not for a brief period?

We are still in contact, sort of. If you count him liking my Facebook statuses and me silently questioning his maturity. I see he's drinking again now. I'm so disappointed. Hurt even. All those hours and messages and suicide threats and tears of worry were for what? Another girl can deal with that now. It doesn't mean I don't still wonder and worry. But I can't help someone who doesn't want to help themselves, or who doesn't want me.

I received the most amazing email from a friend, confirming my worth and congratulating me on my success. My friend told me he had tears at 2.30 am just thinking about what I've achieved. I realised that I'd been receiving validation from the wrong person for far too long. I've been wanting to be needed by someone who doesn't deserve me.

I haven't been remembering him as vividly lately. I guess I haven't been actively thinking about things. As I poured that last glass of Frangelico, I realised I had washed away a story. I didn't feel pain, in fact, I breathed a sigh of relief and said "it's gone". Ironic that I had drank it away. There were two drinks left in the bottle, 13 less than the beers he'd had on our first night together. I felt in control. Not sad. My eyes have stayed dry as I've typed this story, and that Frangelico helped me tell it.

Slow cooked Mexican pork

I'm a big fan of multitasking. So much so it's probably more procrastination than multitasking. When I'm doing something, I feel like I should be doing something else.

So today when I had important stuff to do, I really wanted to be doing something else. Cooking a meal. And so I did. In the slow cooker. It's the perfect way to cook a meal when you've got stuff to do. And it's like a reward at the end of that important stuff.

I am obsessed with Mexican food now. I had tacos from the Taco Truck yesterday. And I wanted more today. But I didn't have the time to make and assemble tacos the way I wanted.
And I needed meals for weekday lunches. And I wanted it to be cheap. A slow cooked meal ticks all these boxes.

I bought a few ingredients for this dish, but I also had some in the pantry and fridge.

First step: marinade pork scotch fillets (low fat and cheap, and freerange at $8 for six). I cut each fillet into four with kitchen scissors. My marinade was half a cup of lemonade, the juice of one lime and one lemon, chopped coriander, chopped chilli and a garlic clove. I lay the pork fillet in the marinade and put it in the fridge for an hour.

While it was marinading (and my dishwasher was washing the slow cooker pot from last night's meal (Moroccan lamb and apricots) I cut a heap of veggies - carrot, onion, garlic, red and green capsicum and mushrooms.

Once the dishwasher was finished, I layered the veggies and pork in the slow cooker with half a tin of tomatoes, a tin of kidney beans and sprinkled half a sachet of fajita mix over it. And I poured over the marinade. I put the lid on and cooked it on low heat for five hours.

I've had a spoonful and it is amazing - the pork is melt in your mouth soft and it's such a tasty dish. I'll be serving it on rice with corn, plain yoghurt and more chilli, plus some cheese.

While it's been cooking I've been able to work on that very important task. :)

The business end: Call for votes and business cards. Being my own brand.

As I mentioned here, I was nominated in the 2012 Sydney Writer's Centre Best Australian Blogs Competition. I am very flattered to be thought of as worthy to be nominated. The voting for the peoples' choice award has commenced, and I'd love for you to vote for me. (Go a couple of pages into the survey and tick Tune into Radio Carly.) While you are there you can vote for many other fantastic blogs - I consider so many of these bloggers to be my friend. There are some talented writers in Australia, and it's really nice to be in their company. I love that this competition acknowledges good writing, because for me, that is what blogging is about. I'll be casting my vote soon - I am so glad all my favourites are listed. Voting closes at 5.00 pm AEST, 9 May. If you choose to vote for me, thank you so much.

A favourite singer of mine, Bob Evans, supported my call for votes by retweeting me! How lovely of him!

Another thing - I designed some new business cards, and they arrived in the mail last week.

 

They were designed for the purpose of my overseas trip. I am SO happy with them.

Someone asked me why I included my photo on the card - when I put out a call for assistance in design, some people advised me against putting a photo on the cards.Perhaps they don't read my blog or aren't aware of my advocacy work. This was my reason:

I used a picture because I will be doing some appearance activism work overseas and also the success of my writing has been because I am honest about the challenges of looking different. I need people to remember me. It's hard to explain but for so long I was noticed - or not noticed because of the way I kook. I have been excluded, stared at, teased etc. Now I have found my confidence and am using my appearance for good things. I am using my appearance for the better. It's my brand, if you like.

I can't wait to start meeting people to hand them out. Thanks to everyone who provided suggestions for the design. :) 

Speaking of brands and being myself - I approached a few about sponsorship for BlogHer, after encouragement and advice from other bloggers. I became despondent after no success. Bit this week, something amazing happened! I am not sure if I can officially announce it here yet, so for now I will say that an organisation that knows me, that believes in me and that has helped me for so many years, is assisting me with funding my trip to speak at the Appearance Matters conference at the University of Western England. I am so incredibly excited and grateful for their generosity. It's better than any corporate sponsorship. And confirms that I am indeed my own brand.

An interview with a comedian: Francesca Martinez

Last week I saw Francesca Martinez, an English comedian, at the Melbourne International Comedy Festival. Her show, called "What the fuck is normal?" explores the themes of having a disability, the pressure to conform, and the need to familiarise difference, because everyone is different. No one is normal. She is a funny woman.


I left the show full of thoughts and happiness, and a lump in my throat. So much of what she spoke about resonated with me. Despite us being different, I could relate to her experiences of living life with such a visible difference. Francesca has Cerebral Palsy, which she's renamed 'wobbly'. The messages she gave in her show were applicable to everyone - it's ok to be different.


Francesca is an accomplished actor, comedian and writer. She manages to bring humour to her wobbliness so well. Stories about being considered too scary for talkshow panels and the condescending attitudes she's experienced are awful, but she tells them with such sunshine and humour. I loved her romantic stories too - she is a beautiful poet.

A few months ago a relative in England told me about her. I am
So glad he did. I really admire her acceptance of her wobbliness, and her encouragement for everyone to embrace their diversity.

Francesca has been kind enough to do an interview for me. Here it is, I just love what she has to say.

Tell me a little about you. Tell me your challenges and triumphs of living with Cerebral Palsy.

"I was a very happy and cheeky kid and my family made me feel very loved. I never felt abnormal and my childhood was great – I had lots of friends and I was always playing and performing. I really loved making people laugh!

When I went to high-school, my life changed dramatically because I felt judged on my appearance and my physical differences which, up until then, hadn’t been important to me. I became very ashamed of myself and very insecure, I remember not wanting to go out anywhere, not going out to parties, and not even going out to walk along the street as I hated people staring at me. I’ve been through those insecurities, and I had to go through a journey, and that’s kind of what my latest show is about. I think it’s a journey we all take to figure out how we are going to define ourselves. I remember a couple of thoughts that really changed my life – one was that I had never met a normal person before, so why would I ever want to be one? Two was that life is so, so short, and am I going to waste my life worrying about doing things differently, when in reality, the only normality is difference.

Those two things really helped me to see the world differently, and I really believe that those shifts of attitude can change your life. I am fascinated by the fact that abstract ideas can have that kind of impact, because my disability didn’t change, it didn’t get better in any way, but suddenly it ceased to be a problem for me. And I guess that is what is at the heart of my show. I’m very interested in exploring ideas that will have a real impact, If people leave your show perhaps either feeling better about something, or seeing something in a new way, then that’s fantastic."

Why do you use the term "wobbly"? - I like it.

"I’ve re-christened myself wobbly, because wobbly is a word I like, wobbly is cool, wobbly is not scary or off-putting. I think it’s really disempowering to grow up having this label slapped on you and I talk about in my show how much I hate the word “cerebral palsy”, how it makes people so nervous. It may sound really trivial – they’re words, they’re sounds – and in one way, I agree, but in another way, words really betray what we think of whatever they’re labelling, and it’s quite a big section in my show, I talk about the awful words given to disability, whereas there are other truly awful things that have quite nice names, like friendly fire. Why? Because those in power want them to sound acceptable.

I think the way we label things is a very political area, and being a baby and having terrible sounding names slapped on you, it’s quite hard to struggle free of them and feel like you’re not a faulty piece of equipment. It’s something I struggled with for years and it’s ironic that I’m still labelled a disabled comic because from the first show I ever did I was questioning how we label each other, and in my experience the only normality there is, is difference. So these labels that try and separate people I find divisive, and in the end it just makes us all feel that there’s a secret club that we’re all trying very hard to fit into, when actually that club doesn’t exist, and a real revelatory moment was when I realised that I’d never met a normal person before. That was really powerful because I thought, wow, they don’t exist."

Laughter is the best medicine. How does comedy help you?
"Comedy’s had an amazing effect on my life, because it’s made me feel happy in my own skin and it’s made me questions society’s attitudes towards disability and normality. It’s empowering to go on stage and talk about difficult experiences and turn them into something positive.. I feel that in a way everyone has got their own disability, whether it’s visible or not, and we’re no different to anyone else. My challenges are often physical, but every person on this planet has challenges, and often the invisible ones are worse. Look at Amy Winehouse, she died at such a young age, and externally she had everything going for her. But obviously her inner struggle was so difficult and a lot harder than, let’s say, what I have gone through. But the world we live in would classify me as having the worst circumstances. However, I would say, actually, I am very loved, I have a very caring family, and I feel I was given the right kind of tools to function with. Ultimately, I just wish that society would stop being so bloody superficial and stop being so obsessed with the physical spectrum, because in my experience there is no correlation between happiness and physical perfection!

As a creative person stand up is very fulfilling because you can take an idea you had while in your bedroom or on a train, and that night you can share it. It’s liberating. And it’s addictive. I love connecting with people, and being able to communicate something that you feel is not only entertaining but of some value to their lives. All my stuff is pretty personal, and my new show is the most personal yet. I love it when you come off stage and people come up to you, and they feel like they know you - and it’s that intimate thing that takes place on stage which I love."

Comedy is a leveller. Tell me how you performing comedy makes people more comfortable learning about and discussing disability, and even interacting with you.

"I think comedy is a unique art form in that it allows you to cut through the chit chat and to just address topics, but in a really lighthearted way. One of the things when I started that I was aware of, is that you hardly ever hear from anyone different making jokes and talking about their life as a person. It’s always quite serious, or quite sad, so I was really happy that I could stand up there and humanise a scary label. It’s interesting, because some critics when I started said, oh she’s funny, but her material needs to broaden out from that issue, and I’ve always felt, it’s not an issue, I do exactly what every other comedian does, I talk about my life. Full stop.

I’ve always felt very passionate that while difference isn’t really covered in the mainstream, I’m going to do my best to be honest about it and share my life. I think comedy is such a perfect way to do that, because it does dispel nerves and fears very quickly. I do feel [that disability] is still the last taboo because if you look at the representation in the media, it’s next to zero, and when it is covered it’s often in a serious or worthy way. I also think maybe it’s because [the subject of disability] conjures up feelings of pity, it makes people confront questions of mortality. I understand there are complex reactions but I also feel the very solution to those feelings is exposure and relationships with all kinds of ability, because ultimately we are all people and that often gets lost if your contact is limited. I can understand why it’s been a difficult area for humanity to come to terms with, but I also feel like we need to deal with it. The funny thing is, disability is normal, because it’s always
existed; there’s no point trying to cover it up or ignore it, it’s always going to be there."

Your comedy touring schedule is rigourous - you tour internationally. Does this have an effect on your disability?

"I have to pace myself and plan my schedule to allow rest time! Luckily, I love travelling and my boyfriend is wonderful at helping me to look after myself during the busy periods!"

What projects have you got coming up?

"I have a 40-date UK Tour which starts in May. I’m also developing a documentary idea called ‘WHAT THE **** IS NORMAL?!’ which we see me travel around searching for a ‘normal’ person. I’ve been working on a sitcom project for years too and hope to pitch it in Australia. Adam Hills is very keen to co-star so I hope to make that happen soon!"

Francesca is playing at the Melbourne International Comedy Festival

Wed 18thto Sunday 22nd April at 6.30pm.

TheUpstairs Lounge

HairyLittle Sista

LittleCollins St

Buy tickets here.

Punching on - Why I love Hamish Blake

Yesterday I was featured on the News Limited social and political commentary website The Punch. I took up the request to write an article about my love for Gold Logie winner, radio and TV presenter Hamish Blake (I was obviously in the social commentary category). I wrote a light, fluffy piece about celebrity crushes and the reason I like Hamish. Because he's cute, but above that, because he's a nice guy.

It was nice writing this piece - not too personal, fun and I got to watch some videos of Hamish on YouTube. Note that I did not write the headline, and I acknowledge this isn't a piece about world peace. In my article I discussed how Hamish takes the piss out of himself to make humour. And I also took the piss out of my own celebrity crushes.

So I now have a byline and profile on News Limited.That's exciting!

I admit that I was hesitant to write for them. But what did I have to lose? It's not as though I put my heart or my face on the line. And thank goodness I didn't. The comments from readers were brutal. There seems to be the attitude that writers put themselves out there and so should expect feedback of all types. Yes, feedback is welcome, but sheer bullying should not be expected or tolerated.

I've been trying not to read the comments, but like the man I love/d's Facebook, I cannot look away. It's fine, the commenters don't know me or what I do. And they've got no context about me. They don't put their names to their words. But I'm ok. One of the positive things is that their negative comments are only restricted to that article on The Punch, and haven't strayed over to my personal blog or email. I do feel very cushioned by the blogosphere and that is lovely. I know you've got my back, where ever my words are. Thank you.

And I am so grateful for the opportunity. The editor was very encouraging and praised the work on my blog.

Here's the article, and you can view the original and comments (if you can bear them) here.

But enough negative comment gazing. I'm on the fucking Punch! And it made front page of news.com.au today!

I have had many celebrity crushes in my 30 years. If these celebrities were remotely attainable, I reckon I’d be in with a chance. None of my friends understand my celebrity crushes. (I understand the passion of those One Directioners.)

(source)

I have loved Darren Hayes for half of my life. I only realised I couldn’t marry him in 2006. Callan Mulvey has made my heart stop since he played that bad boy in Summer Bay. Once I ignored two calls and three texts from a boy who was actually interested in me because I was watching Callan in Rush. I bought the Ben Cousins biography because he is hot. But there were too many words about football and drugs, and not enough pictures. And I also used to love Shane Warne. I never said I was cool.

These days I’m really crushing on last night’s surprise Gold Logie winner Hamish Blake. He’s the obvious crush for a woman of my age. He’s the guy my girlfriends don’t cringe at. They are happy to discuss the intricacies of his attractiveness with me. And there are so many.

Firstly, he is honest. He doesn’t look Hollywood (or Chapel Street). He hasn’t had his teeth whitened or straightened. He gets around in hoodies and jeans. His hair is ruffled. His smile is cute. This makes him sort of attainable, if he wasn’t engaged to Zoe. But it’s not all about looks. Really.

Hamish is the fun guy that everyone wants to be friends with. He works hard, but is not a corporate wanker. He’s clever. He demonstrates success after hard work and persistence. Hamish started off on Channel 31, then Channel 7, then a Saturday morning shift on Fox to drivetime radio and lots of TV work. I think the idea of a funny guy doing radio for two hours a day may suggest laziness but there is so much work that goes on behind the scenes that lazy is not the case. And he gives hope that someone like me, a dabbler in community TV, can make it big by being myself.

He makes his humour through not being afraid to take the piss out of himself. He makes people laugh. And that quality is far hotter than being a beefcake. The childish, yet clever games he invented with Andy – street golf, ghosting, tying themselves together for a week – they’re the things adults wish they could get away with doing.

Those episodes where he appeared on Spicks and Specks, not really knowing many answers but having a laugh anyway are a testament to that. I think he prided himself on humour coming before musical knowledge on Spicks and Specks. He answered questions before knowing the answer, and gave completely irrelevant answers at times. His lack of music knowledge didn’t matter.

Hamish is also loyal to his mates. That bromance with Andy is lovely. Through his own high profile programs, he’s give his mates a chance to break through. Jess Harris. Ryan Shelton. Michael Wipfli. He lets others shine alongside his success. And he adores his Mum.

But most importantly, I have never seen or heard either Hamish or Andy put others down. They don’t resort to derogatory jokes to get cheap laughs. They’re not racist, sexist, ableist or homophobic. The humour purely stems from poking fun at themselves. Unlike some other high profile radio announcers…

Carly Findlay is an appearance activist, writer and community TV presenter. She loves the passion generated from being a fan. She blogs at http://carlyfindlay.blogspot.com and tweets from @carlyfindlay.

(Originally on The Punch 16 April 2012)

Vietnam on a Plate - food tour in Footscray

Vietnamese food is high on my list of favourite foods ever. I have always wanted to go to Vietnam, but health-wise, it is not practical. So the next best thing is to go on a food tour of Vietnamese markets, shops and restaurants in my own backyard.

On Saturday Heidi and I went on a food tour around Footscray. It was a guided walking tour run by Mei Ling from Vietnam on a Plate. Mei Ling provided us with a very comprehensive tour of the Footscray and Little Saigon markets, a number of shops and few restaurants and bakeries. Vietnamese community in and around Footscray is thriving, and it really was like experiencing another culture for five and a half hours.

The indication of the quality market sellers' produce is based on the number of people who shop there. Mei Ling told us that much of the produce in Footscray market is sold to local restaurants and the Victoria University's hospitality school. Here is the produce at Footscray market - the greens, all things chicken - the best chicken stockist in the market, including eggs from the inside and outside of the chicken, quails, pigeons and duck - and the view of Melbourne from the top of the carpark.

Mei Ling spend a considerable amount of time showing us vegetables, and telling us how to cook them. There are so many different green vegetables, and equally as many herbs! Here the photo I took of Heidi taking a photo of water spinach.

 

The Vietnamese don't waste much, and so in most cases, all of the vegetable (and animal) is used - even the sweet potato leaves. The eggs from inside the chicken - before shells had formed around them - were sold. (Heidi and I were discussing the line we draw about what we feel comfortable about eating - it's interesting that so many of us feel comfortable eating the outside of an animal, but not the inside.) Mei Ling spoke of a store that sold the three day old duckling in a shell. There was one market stall that sold pork, and next door the pet shop was selling dried pig's ears and tails.

We broke for morning tea where we were given Vietnamese pork rolls (my favourite - full of coriander, chilli and pork) and tea or coffee. I had a really good hot chocolate. 

 

The market sellers were vocal in selling their fruit and vegetables - it was loud, crowded, exciting and a bit scary. We were given custard apples and persimons to taste as we were jostling through Little Saigon - delicious!

We spent a long time exploring the supermarkets - we looked at spices and shrimp paste, and tofu and cookware. These pictures reminded me of the Asian Snack Challenge that a friend and I did after uni two years ago. I want to reignite the challenge!

At one point, a lady on the food tour asked me whether I was taking photos so I could remember what I'd buy later. I told her I am a blogger, and explained what a blog is, and she asked me if it was legal! Very cute :)

We learnt about cultural traditions - symbols to attract wealth and to ward away bad luck, and we saw these paper suits, that are given to the deceased for their afterlife.

We also learnt that the Vietnamese who come to Australia are often very stressed from the life they've left behind, and their health is often suffering.

Lunch was at Quan An (102 Hopkins Street Footscray). We shared a range of meals which were fantastic. Pictured (from top left, clockwise) is prawn, pork and green papaya coleslaw, authentic Vietnamese spring rolls (eaten wrapped in a lettuce leaf with Vietnamese mint, lemin leaves and dipping sauce), grilled fish with rice vermicilli and steamed rice paper with minced pork and pork cake slices.

 We also had combination fried rice and fried taro cake with egg.

After lunch we walked some more, and were given egg tarts - my other favourite! =(I had three due to other tour walkers giving them to me!) - and saw these panda fish tofu and tiny eggplants. I found it funny to see the freshness of the fruit and vegetables, contrasted with the cutesy, highly processed food in various shops and supermarkets.

The tour was exceptionally good value (this was an extension of the Melbourne Food and Wine Festival, and subsidised by the Maribyrnong City Council). Mei Ling was very knowledgable and I learnt a lot about how to cook with vegetables and herbs, and also about the cultural aspects of the Asian community.  Heidi and I were quite exhausted by the end of it though, and we thought it could have been a little shorter. I would have liked to have been given more opportunity to buy produce as they were being explained to us, because after the long day of touring, I was tired and not so much in the mood for shopping, and most of the produce I wanted had sold out (I only bought shrimp paste, duck maryland and curry paste.). I was also a bit tired of my "sunburn" being mentioned four times - I believe this was out of concern initially, but once I gave an explanation, it needn't have been raised again.

A few things didn't sit well with me either - and this isn't a reflection of the tour itself, but rather a culture shock, or my naivity. We were told Footscray is largely a cash economy, and it made me wonder about the tax implications and regulations around hygiene and quality of the food. We saw a group of people selling counterfeit Louis Vuitton out of a van. I was also hesitant to buy the meat from the market because of the smell, and I wondered about the farming ethics of the meat and fish. There were lots of crabs in crates, their legs tied, and they were out of water.

Some of the other tour walkers and I talked about how this seemed cruel - they'd die a slow death. We also saw a live fish shop - the boys went in to explore, the girls shrieked at the fish being killed in front of them. I guess these new sights really opened up my eyes to the way food is treated in other cultures.

Overall it was a good experience. I left feeling more equipped with the knowledge of different Asian fruit and vegetables, and how to cook with them, and also found that Footscray is a lot safer than when I used to visit there, every day in transit between train and tram when I first moved to Melbourne. I definitely want to spend more time shopping at the markets there. I do recommend a food tour - it's a great way to experience the culture of your city!