29 June 2015

My unborn child has inspired me to think about disability and genetics and the value of a life.

I wrote this for the Amazing Babes event at the Emerging Writers Festival. Gosh I was nervous about reading it out. I cried when I read it to Adam (and so did he). And I choked up on stage. And I was scared about publishing it. Because these issues aren't discussed enough. And people fling judgment around - even people in my own community. I don't think they realise how their judgement creates fear about discussing issues like this one.

But I got brave after getting such a good response from the Amazing Babe audience and I pitched it to Daily Life. It was edited and published. And the response was wonderful. People told me how much they related, they told me their stories of deciding to have a family, and said that Adam and I will make loving parents if we decide to have children. People said they cried. Even my editor. And I cried. Here is the unedited version - longer and funnier than you may have previously read. Thank you.




This is a letter to my unborn daughter - an amazing babe. The hardest letter I’ve ever written and read.

Before my fiancĂ© Adam thinks I’m telling you before he hears the news (he can’t be here tonight), before you tut tut at me for drinking wine, and before you tweet to the world that Carly Findlay is having a baby, I’ll set things straight. I’m not pregnant. Nope. Not yet. That’s just a food baby under my dress.

I’m not even certain that I want my life changed so drastically by a baby. But I’m getting clucky. I’m 33, due to wed next year. My friends are having babies. I gush over animal hoodies and denim pinafores - I’ve been browsing the baby section of H&M. I want to squeeze chubby cheeks and blow raspberries on tummies and tickle wriggly toes.

Last month I hosted an event for adults and children affected by the same condition as me. Adam was king of the kids - entertaining them, making them laugh and making play dough hearts for me. As I was chatting to a panel of doctors, the view of Adam distracted me. The photographer was taking a photo of a 10 month old baby, and Adam was behind the photographer making the baby laugh. Oh my ovaries. He will make a wonderful father.

Amazing babe, I'm wondering so many things. I wonder what you’ll look like?

How will I handle changing nappies and wiping your nose when I can’t look in the toilet after someone else has left their poo unflushed?

What will your hair be like when mine is African and Adam’s is Asian?

Will I hold back from sharing your photo on social media? Will having a baby make me a mummy blogger? (I wonder if brands will be more willing to work with me then?!)

Will I be a stay at home mum and a writer, or will Adam be a stay at home dad?

I wonder if you'll be an only child like me or have a sibling like Adam.

Will it hurt when you come out?

How will we even afford it?

Will I have to go to weekend sport when I hate sport, and can your dad take you to swimming lessons because I can't swim?

How can I give up soft cheese for 9 months?!

All these thoughts and you’re just a twinkle in my eye.

When I grew up, the kids at school told me I’d never have sex. They assumed that my appearance and skin was a deterrent to all boys. And for a long time, and after dating a few idiots, I assumed I’d be single forever. But then I met the beautiful Adam. And now we’re getting married. I can’t believe it! This wedding, as well as being the best party I never thought I’d throw, is the middle finger to those high school bitches.

And with marriage comes the possibility of having children - something else I never thought would be on my horizon. Amazing babe, you might be in my life one day.

You’ve inspired me and you’re not even born yet. You’ve inspired me to think about disability and genetics and the value of a life.

After doctors congratulate me, they talk family planning. I am confident that with my medical team, Adam and I will have all the support we need to make informed decisions.

For me, it’s not just simply going on or going off contraception. It’s about genetics. A gamble. An informed choice. And it’s made me think about being pro choice. I am pro choice - a woman’s body is her own and if she is not in the right space to bring a child into the world - for whatever reason, I respect her choice. I believe any life, even a life with a disability - including my genetic skin condition - deserves to live and be loved.

And then there’s this. I know the heaving pain that this condition brings. I know the social challenges, the isolation and the discrimination. It gets better but it never ends. Could I put my little one through that?

There’s also my health to consider. A woman with Ichthyosis having a baby is possible - I have friends who’ve recently become mums. But what if I get too sick to be a good mum? How could I care for a tiny baby and myself when my skin is sore? What if you have the same condition as me?

So many thoughts. And you’re just an amazing babe in my mind. This isn’t even something I feel I can discuss in my own illness community because views about pre-selection, abortion and religion are so staunch, and genetic testing isn’t often considered until after the baby is born.

Amazing babe. If you are born with Ichthyosis, know that you will be as loved as if you were born without. I know this condition so well. It will get better, but it will be hard. And you’ll have a supportive community around you. And my mum, the most amazing babe, has taught me so much. She’s going to make such a wonderful grandmother. You'll be spoilt!

And there are so many new developments in the treatment and management of Ichthyosis that weren't around when I was little. Play therapy, assistance in school, cooling vests and creams. Society is so much more diverse now, and there are anti bullying programs in schools. Progress.

And maybe you’ll be our adopted child - Adam and I can give you the life that your birth parents couldn’t. You’ll be loved no less than if you had my smile and Adam’s nose.

You might get some comments about your mum looking different to your friends’ mums. I hope that you teach them about diversity and inclusion through leading by example, and you don’t get too tired explaining my appearance.

My parents had no knowledge of Ichthyosis when I was born. They came to Australia as political refugees - to escape apartheid. They moved to a regional city two months before I was born. And they knew nobody. I wasn’t expected to survive. But I did. And they did an amazing job. Fast forward 33 years and look how much we know about Ichthyosis.

Amazing babe, before I’d even typed these thoughts into my computer, before Adam had the chance to smile at me during a folate commercial on TV (he does it all the time now!), before we’d even been engaged for four months, I was faced with The Talk. The one where I’d have to tell someone my thoughts about having children. The one where I had to tell someone my views on Ichthyosis, genetics and pre-selection and abortion and …

I hadn’t even processed the idea of having children myself.

What should have been an exciting conversation - preferably with Adam or my own mother or my geneticist - was one that left me in tears and shaking. Words were spat at me. Words about me being a burden and being an irresponsible mother because I have a rare, severe, genetic illness. And some arbitrary facts were thrown around about the likelihood of me passing on this condition to my unplanned, unborn child. It wasn’t said but I could hear what they were thinking in their tone: “I’d knowingly cause physical and social pain to a baby by passing on this condition"

A quick google search does not provide accurate details of the chance of me passing on my condition. With Adam’s ‘normal’ skin, and me having the condition, it’s less of a chance than my own parents had. A discussion with my geneticist confirmed low odds - and she also said I should not be denied the right to be a mother.

It did not matter to this person that I’ve got a wonderful team of specialists or that I know more about the condition than they will ever know. It did not matter that my parents had no family support when I was born, but they did their very best. It didn’t even matter that my partner is 100 percent committed to me - and that not even he and I had discussed having children at the time. It didn’t matter how much this conversation hurt me and that I will never be able to feel comfortable around them again. Disability was seen as a tragedy - my disability and your potential disability - and I could not reason otherwise.

My friend Jax Brown, who has a disability, was confronted with a conversation about eugenics - the majority agreed they would terminate a foetus considered to be abnormal. Jax wrote: "Conversations like this devalue the contributions to society of anyone with a disability. This, situations like this, is the weight of marginality. This is minority stress. This is one of the fundamental things that make our lives hard, the unexpected times when you have to fight for your right to be as you are, when you have to tackle the assumptions all of a sudden and with no warning, and you have to do it well because if you don't the injustice will just continue on.”

When you have a disability, your appearance, body and ability is up for discussion by everyone. From stares and comments, questions and assumptions, judgment and sometimes discrimination. I never thought I’d be discussing my reproductive choices with anyone other than my partner and my medical team. People assume that through disability, we will make ‘irresponsible’ choices, and people will vocalise their judgment.

I know what people think of children with disabilities being born. I see it in the media - headlines scream: "Disfigured Dad Decides To Keep Baby With Same Disfiguring Condition, Despite Cruel Comments And Push By Others To Abort- and commenters unfairly weigh in on a right to life. Friends always say they don’t mind the sex of the baby, as long as it’s healthy. Doctors force sterilisations and abortions on people with physical and intellectual disabilities. When I was in year seven, a fellow student told me that if I was born to her mother, she’d have given me up. I’ve been shamed because I’m an only child, and told that it would have been fairer on me if my parents had given me a sibling - preferably one with Ichthyosis. A person with my skin condition told me it was child abuse for people with the condition to have children. And as mentioned, last year I was forced to discuss my preference to have children.

It was then that I experienced a small part of what my parents might have felt during the apartheid. That my colour - my condition - will make me an unfit mother.

This is why I blog. To raise expectations. I have to do that every day of my life.

But disability is not the worst thing that could happen.

Stella Young wrote: “Disability is often framed, in medical terms, as the ultimate disaster and certainly as a deficit.”

Disability is not the worst thing that could happen because you will be loved, supported and planned for. You will be warm and your tummy will be full and you’ll have lots of books to read. You will have a wonderful life - I’m proof that you can. Amazing babe, you will be so planned. I’ll even draw up a spreadsheet for you - and I don’t make spreadsheets willingly.

Disability will not be the worst thing to happen to you as my child, or for me as your mother. The worst thing that could happen is other peoples’ closed-mindedness.

Amazing babe, I don’t even know if you’ll exist. But it doesn’t mean I haven’t been thinking of you.

25 June 2015

Fangirl.


Hollywood hall of fame - "stop worshipping idols, humanise them, and realise you've got a place next to them." - Tavi Gevinson

It was almost two years ago that I saw Tavi Gevison speak at the Melbourne Writers Festival. She was 17 at the time, and had equal amounts of wisdom and immaturity. I wrote about it here. Her words about fandom have stuck with me all this time. Being an avid reader and fan, she shared many quotes with us. I kept playing this quote she mentioned over in my head, frantically searching for it online and eventually buying the book to read it again. (Can I just remind you how risky it is to google and book called 'I love dick'?!)

"You're shrunk and bottled in a glass jar, you're a portable saint. Knowing you's like knowing Jesus. There are billions of us and only one of you so I don't expect much from you personally. There are no answers to my life. But I'm touched by you and fulfilled just by believing." 
~ Chris Kraus - I love dick

Fandom is believing in something. It's relating to lyrics and lives. It's finding the joy in the little things. It is being able to take something of someone you admire with you through your headphones or in a lyrics booklet or in your pocket through a social media app. It's precious - knowing that you're part of a tiny, or big community that all feel the same way about a band or an actor or a book.

Tavi seeks solace in fangirlism - something I can relate to so much. She calls herself a "professional fangirl", and said "being a fangirl is one of the most happying things anyone can do." Fangirlism is both an expression of individuality and something that brings people together. Tavi said "you might look uncool for expressing enthusiasm" - I identified with that a lot - my friends always tease me for loving Darren Hayes, citing that's uncool. But I feel the coolest. Because I've got this fandom to hold on to.

Tavi said that it's ok not to like high-brow everything - she juxtapositions her fandom of One Direction alongside Fleetwood Mac. She also spoke about how fans of one idol can tend to look down on fans of other idols - "let others like stuff", she said. I’ve been a fan of a few celebrities - and most people tell me how daggy I am for loving them. But I don’t care. Just like I don’t mind not conforming, I don’t mind that my idols aren’t mainstream either.

She said "stop worshipping idols, humanise them, and realise you've got a place next to them." And as I've moved into my 30s, and with social media providing instant connection with my idols, this is so true. I've got a few idols - it's no secret. I see what they're into, their beliefs and values, and realise that maybe we've got more in common than I used to believe.

My good friend Lauren Moss told me that in her leadership training courses that she delivers to youth, she asks her students to list all the qualities they see in their idols and then list all the qualities they recognise in themselves. Her students are able to see that their idols are human, on the same level, and they share similar traits.

The interaction fans and their idols have on social media is unprecedented. It's a personal connection, and a window into each other's lives. I'm sure it could be detrimental to an idol - invasion of privacy and high expectations from fans to respond; and likewise for fans - especially if their expectations are not met. But on the whole, it's positive. Idols and fans get to know each other like fans only dreamed of.

And now, Darren Hayes has read my blog. I've been a fan of his since 1996.

He read it and tweeted me, referencing something I wrote in it. He's done this a couple of times now and every time it's happened, I've jumped up and ran around the house, squealing.

While that may not mean a lot to many of you, and may seem like I'm chasing celebrity, it means so much to me. For 18 years and counting, I've carried his words in my ears and in my heart.

I screenshot all of his twitter correspondence with me. While I can't say we are friends, we now communicate more deeply than me just squealing at him. We've talked about coming out as gay and disabled, and about star wars costumes and my Reddit experience. The stuff we talk about on Twitter is far from the "OMG I love you" conversations I had with him as a younger fan. And I've spoken to him on his podcast. He was genuinely interested in my story.

When I wrote about meeting Darren outside the Enmore in Sydney in 2011, I mentioned I told him I loved him and he said "I love you too Carly". I received one of the most critical comments ever. It sticks with me now. Someone told me they were concerned for my emotional well being because of my love for Darren.  And yet it was completely the opposite. Darren's words validated that he knew who I was.

Tavi's talk reminded me that there are people who understand fandom and there are people who do not. It reminded me there's a sense of unity in fandom - unity in love, knowledge, fashion mimicry (floral headbands galore at Tavi, hand printed tshirts at a Lorde concert ) and excitement. Fandom gives the isolated a place to belong.

And maybe this is what kept me going as an isolated teen. Knowing that there are others out there like me, relating to lyric after lyric, and having a special interest that I could devote my time to. One of my best and only friendships in high school was strengthened because of Savage Garden. There were nights spent dubbing videos of their performances, sharing our first concert experiences and feeling excited about this higher being that we'd chosen to follow. And when my friend said she had drifted away from the band and Darren Hayes, our friendship drifted apart too.

Tavi said that it's ok not to like high-brow everything - she juxtapositions her fandom of One Direction alongside Fleetwood Mac. She also spoke about how fans of one idol can tend to look down on fans of other idols - "let others like stuff", she said.

I fond this photo from when I was 15 years old, in the queue for my first Savage Garden concert. 5 May 1997. St Kilda. That excitement on my face is the same as I feel now when I think about my fandom.

18 years on and Savage Garden’s greatest hits album was released. I squealed like it was 1997.

I am so proud to have followed this band since I saw them on TV in 1996. This fandom has changed my life. And I’ve also realised that my idols are people who walk alongside me - creatives, managers and friends.

Who do you fangirl over? Has your admiration for idols changed over the years? Have you connected with your idols?



22 June 2015

What an editor's rejection letter taught me.



I got a heart-sinking rejection email from an editor this month. I had written a few posts for an entertainment website and was quite proud of my work - showcasing a different angle there. But my writing style had not performed well - traffic wise - and they don’t have the budget to keep me as a regular writer. I actually haven’t had a rejection from a pitch for a long time - and I’ve been feeling very fragile, so this was a hard email to read.

And then I got over myself. I thought about some truths. That rejection wasn’t so bad. This is what a rejection letter taught me:

I hadn’t felt confident writing articles for that publication anyway. Well, my writing was good, and my ideas were original, but I couldn’t conform to their Buzzfeed-like style. Pop culture isn’t really my thing anymore. I prefer to delve into bigger issues, write more words and make an impact by getting people thinking about diversity.

I dabbled, but didn’t make a splash there. And that’s ok. I don’t have to be good at every style of writing.

I spent a long time researching and writing for not very much return. I can put my time to other things like creating a super blogging course.

It might have been another byline, but it’s ok that I’m not a regular at that website. That opportunity can go to other writers. There’s enough Internet for everybody.

While I am time-poor, I should play on my strengths, research and write what I enjoy, and focus on my area of expertise. And it’s ok if my writing style doesn’t match the style of that website. I don’t have to push myself if I can’t.

I write for fun and a bit of extra pocket money. When it stops being fun, I can stop. I am lucky to have that privilege.

I’m having success at pitching myself to brands as well as pitching articles to editors. I hadn’t had the confidence to do this until recently - and I’ve had so much success partnering with brands for the Australian Ichthyosis Meet.

Just because my writing style doesn’t suit a website, it doesn’t mean I’m not a good writer.

Most of my pitches elsewhere are accepted and get a great response from readers. I’ve won some awards. And I've helped people see a different perspective. For that I can be proud.

What has a knock-back taught you?

19 June 2015

Bloggers with disabilities on No Limits.

Australian disability bloggers on the set of No Limits - Carly Findlay, Leisa Prowd, Hayley Cafarella and Michelle Roger

You might remember that late last year I was invited back to produce and anchor an episode of No Limits on Channel 31. My dear friend Kath (director of the show) was interested in how blogging allows people with disabilities to have a voice, and she wanted me to discuss that.

I asked some other dear friends - who I've met through blogging of course - to chat with me. Hayley, Michelle and Leisa came to the studio and were complete SUPERSTARS! We could have chatted about this all day!

What's so awesome about blogging is that we are making our own media, controlling the way our stories are being told, and making meaningful connections and positive change.

You can watch our program here now! I received the DVD copy of the program and have finally had access to super fast internet to upload it.







I really enjoyed the discussion about how it can be a big responsibility to blog about illness and disability, and the expectation that readers can place on you.

How wonderful it is to be a part of a niche blogging community, and also the wider Australian blogging community. These conversations need to happen more!
Australian disability bloggers on the set of No Limits - Carly Findlay, Leisa Prowd, Hayley Cafarella and Michelle Roger
Also, if you are an Australian blogger with a disability or chronic illness and would like to join a wonderfully supportive Facebook group, you can do so here. And if you want to contribute to my blog via a guest post, I wrote how you can do so here.

(The original post about the filming and screening was here.)

18 June 2015

Make a stranger feel like they're your friend.



I took a trip on the train to the country this week. The train was not fully booked, and so I sat on the seat opposite to the one I’d been assigned. The lady I was supposed to be sitting next to told me a lot about herself before the train departed. She told me that she is afraid of heights and that I would need to help her when the train went over a bridge.

I wasn’t expecting the level of anxiety she faced. I wasn’t sure how I’d help her. I have only had one recognisable panic attack. I had just had a conversation with a friend saying that I was unsure about helping someone with mental illness, and I hoped I was doing enough by asking ‘Are you ok”.

As the train went over a bridge she put her pillow over her face and started to cry and take short breaths. It was very sad to see. She’d ask me if she was over the bridge yet. She would look out of the window because her psychologist had told her to do that.

I tried to reassure that we were safe and tried to talk to her about good things like her upcoming holiday. I suggested she drink water. I did the things a nurse did to me when I have a blood test, when I cryperventilate over the needles.

Each time the train tracks reached ground level, she apologised, thinking she’d been silly. She thanked me profusely, and said "All my prayers were answered. I got worried that I'd sit next to someone on the train who would think I'm a freak but you've helped me so much. I am so glad I sat next to you.”

As the trip went on, she told me about a violent, traumatic situation she’d experienced last year. She was about my Mum’s age, maybe a bit younger, and I felt so sad when she told me of her experience. I gave her a number for a government helpline and encouraged her to call it when she is able. She told me she would call, with her husband’s support.

When I got on the train, I was looking forward to reading and resting. Selfishly, I wanted to be alone for a while. I didn’t think I’d have an interaction like this. And I didn’t feel prepared to help someone through a very difficult time. But even though I have not experienced the level of anxiety she did, I still had the tools to help her.

Sometimes we’re worried we don’t know what to do to help others. There aren’t enough guidebooks or tool boxes. But we can all offer love and kindness - even to those who we’ve only just met. If we treat people how we’d like to be treated, or in a way that has felt loving and comforting for us in the past, it can make the world of difference to someone else.

We don’t know the struggles of the stranger opposite us on the train. But it’s so important that we make that stranger feel like they’re our friend. We can look up from our smartphone or newspaper, say hello to our fellow passengers and help them through a bad time if they need us to. Sometimes that's enough.

If you need to talk to someone, you can call LifeLine on 13 11 14, Kids' Helpline on 1800 55 1800, or Beyond Blue on 1300 22 4636. And Colour Me Anna has written a post about helping someone with anxiety.

17 June 2015

Finding my Hair Romance (Still not Rapunzel, and that's ok.)

This post was originally written for my friend - blogging and hair superstar - Christina who is The Hair at Hair Romance. I was so excited to be featured on her blog :) It was titled STILL NOT RAPUNZEL AND THAT’S OK




My hospital file is thick. That’s what happens when you live with a rare severe illness requiring many inpatient stays and outpatient appointments throughout life. The file is more than a medical report though. While it’s filled with doctors’ notes and medical photography, it’s like a scrapbook – with pages of articles I’ve written, and locks of my hair. My hospital file has come with me from the children’s hospital to the adult hospital. A few years ago, the head dermatologist – who I’ve seen since I was six years old – flicked through the pages from my childhood. He told me that when I was a little girl, I wanted to become a doctor and have long hair like Rapunzel. My childhood dreams have not come true. I’m living a great life, but I’m not a doctor, nor can I hang my tresses over my balcony for my prince to climb.

The rare, severe illness – a skin condition called Ichthyosis – has meant my hair has never been long. And it will never rival my hospital file for thickness. The type of Ichthyosis I have (Netherton’s Syndrome) causes brittle hair, prone to breaking off at the root. My scalp is scaly.

My hair as a newborn was thick and straight – much different to my Mum’s African ‘fro. And then it fell out. At preschool and primary school, Mum would scrape together my hair into ringlet pigtails. I never wanted a haircut because my hair took so long to grow – what a waste of hair, I thought!

Mum spent half an hour each night combing my scalp – she did this until I was in my late teens. This was such precious time spent together – I would tell her about my day and we would get creative through making up stories. I am so lucky that this condition has allowed me to bond with my parents, and for the opportunity to read and write instead of playing sport or while laid up in hospital. Sometimes, when I go home to my parents, I cuddle up on the couch and ask Mum to do my scalp like old times – it feels like love.

At high school I discovered hair clips which broke my hair more, and mousse for curly hair – which gave me round, yet crunchy curls. All the girls were dying their hair with supermarket rinses – reds and burgundies. I tried henna, but it was very messy, and the white scales on my scalp ended up redder than my very dark brown hair would take.

When I was around 15, the hair just above the nape of my neck fell out. Like an undercut. Except I never wanted an undercut – they were so 1994. My scalp became itchy and bloody, and the more I scratched the less my hair grew. It became patchy at the front too – and I would clip the wispy strands over the bald spots to hide them. Dermatologists did not know the cause, nor what to do – it could have been a fungal infection, but was probably just my unpredictable skin condition playing up. It went on for two and a half years – the less I scratched it the better it became.

In the past 10 years, my hair is the best it’s ever been. While it’s not long, it’s thicker and healthier. It’s curly so it looks full. Sometimes I get bald patches when the comb nicks my scalp, but these grow back much quicker than when I was younger. I stopped using supermarket and salon shampoo, instead switching to sulphate-free shampoo (I love Alchemy and MooGoo) and I condition more than I wash my hair. I comb the scale from my scalp every second or third day, which gives it a rest from the gentle trauma of skin agitation. And I wear hats – not only to protect me from the sun, but to keep me warm. We lose so much heat from our heads. I occasionally use very gentle, moisture-rich styling products like the Body Shop’s brazil nut cream, plain coconut oil and Miss Jessica’s products for African hair that I found in New York (I love Curly Pudding).

I used to see long hair as a sign of femininity – and because my hair has always been short, it was hard to feel feminine because of this portrayal. It’s rare to see actors and models with short hair. It didn’t help that sometimes, when people stared at or commented about my skin, they’d ask why that boy had a red face. They couldn’t see past my red skin AND they thought I was a boy. Now, as I look for wedding inspiration on Pinterest, short hairstyles are lacking. But I’ve poured over pictures of Kerri Russell in her short haired phase, and pinned some beautiful photos of women wearing floral and pearl hairpieces over their short curls.

The way the media and advertising portrays people with scaly scalps can be damaging – have you seen dandruff shampoo commercials?! People with flakes in their hair and on their shoulders are depicted as dirty, unsuccessful and to be avoided. This isn’t the case. Conditions like mine can’t be treated with anti-dandruff shampoo. People with dandruff and other scaly scalp conditions shouldn’t be socially penalised for our appearance and the media and society’s perceptions of a scaly scalp.

Now I’m close to my mid -30s, I am at peace with my hair and my scalp. I love my curls, I love it short (because it makes me feel tall) and I can’t wait to wear a sparkly accessory in my hair on my wedding day. That dream of being Rapunzel is long gone – I’ve learnt to manage my hair and scalp the best I can, and realised that others’ perceptions of short hair and a scaly scalp do not detract from the person I am.

(Christina is on the left, and the other curly haired beauty is Carly Jacobs who blogs at Smaggle. Christina also blogs with her husband at Mr and Mrs Romance. You can check out Chrissy and Carly's fantastic blog course at Little Blog Big.)

15 June 2015

Life hacks for managing chronic illness and disabilities.



I have to be innovative to manage Ichthyosis.

My feet have been in excruciating pain. They went through their annual shed - the skin on the soles slowly came away. My brain worked and body moved but it hurt to walk. I'd been bathing them in saltwater and dressing them with antiseptic cream and Tubifast. The dressing needed some padding to protect my soles - and so I used some nursing pads.

And at work, my manager and I created a stool for me to elevate my legs under my desk. Two small bins stacked together, padded with some old legislation books to make them taller! Such a relief to put my feet up!

I asked friends how they are innovative with managing their conditions.

Rachel said:
I'm studying (via block courses) at the moment and sitting upright in a normal chair for a couple of consecutive days is impossible for me. So I take along my beanbag, which means I can recline and use my chair for a footstool! It works a treat and I cope so much better with this small accomodation. People have been so lovely about it, too.
Kerry told me:
"I'm allergic to light and heat so I freeze wet towels to wrap myself in to relieve the pain and intense itch. so cold, but so nice!"
Elizabeth said:
"I wear Skechers Go Walk 2 shoes, the extra thick flexible sole cushions my feet. That way I can walk a lot more but I really wish they were more attractive, like my shoes used to be. Then again, I should be grateful I can still walk, lol."
My old next-door neighbour Naomi said:
"Ohhh... my last workplace bought me an ottoman to put my feet up on. It was one of the nicest things that a boss ever did for me. These days I switch tasks to keep productive through as much of the day as possible. I work from home so I can work lying down if I need to and nap in my lunch breaks. I cook meals on the weekend and freeze them so I don't have to order out if I'm having a bad day. I'm slowly learning to just freaking rest if I'm overtired."
Maria, who has Ichthyosis loves support socks:
"Support socks are my help for my sore and weeping legs."
Alfie's mum Cat told me
"It's amazing what we find to help us when we need to! I used to be able to take a nap at work on my lunch break when I needed to, I had a quiet room I could go to and not disability related but I used a tampon to stop a nose bleed...didn't look attractive but stopped my nose bleed!!"
Jess joked that she uses her two tall, strong bodies for jobs!:
"I have learned to open jars by smashing the top of it on the bench and popping it off. I can't hold my arms up long enough to hang washing on the clothes line, so I use clothes horses instead. I hang all my wet washing on coat hangers and almost never have to iron."

What 'life-hacks' do you use to manage your illness or disability?

11 June 2015

Comic-Con: accessibility, appearance diversity, escapism and fittingin. (Giveaway closed.)

I have been given tickets to Oz Comic-Con in exchange for writing this post. I have not been paid to write it, though I’ve done a truckload of research for it - it’s been a fun post to write! 

I've taken the appearance diversity and disability view - something the promotors had not considered until they read my draft. 

There is also a giveaway for you - so read on! (EDIT: 18 June - the giveaway has been drawn and winners notified.)

Corbin dressed up at Comic-COn. Text reads 'appearance diversity and accessibility at Comic-Con'

When I put my hand up to write about Oz Comic-Con (held in Melbourne on 27 and 28 June at the Melbourne Convention and Exhibtiion Centre), I hadn’t considered the depth that this post could take. Sure, I am a fangirl from way back (though I’ve never been to a Comic-Con) and Adam is a regular Comic-Con devotee. But then I got chatting with Sandra about how else it could fit with my blog - and she mentioned disability. Lightbulb moment! In 2013, 33,000 people attended Comic-Con in Melbourne alone. So if 20% of Australians have a disability, perhaps 6,600 Oz Comic-Con attendees had a disability of some sort?! And Sandra and I wanted to hear from some of these attendees.

First though - my devoted fiancĂ© dressed up in costume for his lady’s blog! Nawww. When we first met online, I had a look through his profile pictures and there was one of him dressed up as Luke Skywalker. I dismissed this as cute, if not a little nerdy, and didn’t think about it until this post opportunity came up. I asked if he still has the costume - and of course, it was hanging in the cupboard!
Adam dressed as Luke Skywalker
I asked Adam what he likes about Oz Comic-Con. He’s a big fan of Star Wars and hopes to see more Star Wars exhibits this year. He is very quiet and introverted but loves dressing up as his favourite character, and he has the confidence to do so because there are other fans like him there. This is the cutest!
Adam dressed as Luke Skywalker
And now onto disability at Oz Comic-Con.

The Australian Comic-Con website dos not feature any accessibility information (but I will pass on this tip). However, I’ve been told by the an Oz Comic-Con representative that the venue is accessible and companion cards are accepted. My friend Melissa said there is wheelchair access and priority queues, but wait times can be long. She also told me there’t not always sun protection when queuing outside, and there is only the option to sit on the ground if you cannot stand. She said the "average day can be up to 10kms walking + 4-5 hrs in queues". There is also an anti-harassment policy, encouraging respectful, inclusive behaviour. The international Comic-Con website provides extensive accessibility information.

In the USA, the comic and fan convention culture extends to in-depth discussions and exhibitions around disability issues. 'Cripping the Con', held in March 2015, was a symposium discussing perceptions of people with disabilities, as well as the portrayal of disability in games, and possibilities of alternate bodies in the virtual world. And in May, Denver Comic-Con featured a program called Virtual Ability, to help people with disabilities receive support within virtual worlds. Virtual worlds allow PWDs the opportunity live life as an able-bodied person - they can do activities like dancing and hiking.

I love seeing people dressed for Comic-Con (and similar CosPlay events). I love the fandom, but more so, I love the willingness to stand out in regular spaces like on public transport before and after the event, and I love the connectedness of attendees when they find their tribe. It’s a hive of self expression.

The art of dressing up diverts onlookers’ attention to the features of the costume. Wendy, who has Ichthyosis and would like to go to a Comic-Con some day loves to dress up as Wonder Woman. "You can be who you want to be and it take the stares away from your skin so people focus on your outfit instead”, Wendy told me.

The people I’ve known to partake in CosPlay and attend events like Oz Comic-Con (or 'Cons' as regulars call them) are sometimes shy and introverted, and perhaps haven’t always felt they could be themselves.

But these events allow them to fit in and be themselves, and as my friend Eliza pointed out, they might be dressing up as a character that they relate to or aspire to. Eliza, who will be dressing up as a character from FireFly, will be going to the Melbourne event for the first time this year. She is going because it is affordable and “will be cool to be around people who love nerd shit so much and meet really interesting people." Eliza is a wheelchair user. She believes Oz Comic-Con is a form of escapism, and also relatability. “It can be comforting to people who are different because those characters are from such different worlds and are essentially them or their heroes”, Eliza said. 

Eight year old Corbin (featured in the top photo and below) has Lymphatic Malformation which causes an enlarged face. He regularly goes to Comic-Con with his family. He sometimes has photos with other cosplayers, and recognises the characters they dress up as.”It’s just their “thing”, he said.
Corbin, dressed up in costume, with a character at Comic-Con
I think Corbin looks like a superhero even when he's not in costume! He told me he loves dressing up because it’s fun! "It’s a bit like free dress day at school. It’s like I’m an actor in a movie or something, it makes me feel adventurous. Everyone else does, it makes me feel the same as everyone else”, he said. I love this! He told me it feels “normal” to be part of a big crowd of people in costume.

I asked Corbin if people stare at him for how awesome he looks? “Sometimes”, he told me. "Sometimes I’m shy. In the real world people stare at me because of my looks but at Con they stare because my dressing up is cool. I feel like I’m going to have lots of fun at the next Con because I’m cosplaying Toothless.”

Corbin feels very included - he said "Con is for everyone, I feel like I am part of those people."

Corbin’s mum Roni offered another perspective, one of good intentions, but awkward for the person who commented on Corbin’s appearance. “We had an experience he had where he was not in costume, and a guy asked him where he got his cool mask and who he was supposed to be smile emoticon”, Roni said. “[The man] was terribly embarrassed when we told him it was his face, but I guess in the context of con the intent of asking such things seemed ... less offensive than in regular space?"

That was such an interesting exchange - what was a compliment in a specific costumed setting could have been an insult outside of a Con.

Kellie is another regular fan convention attendee, going as many as she can afford. She has brittle bones (Osteogenisis Imperfecta). She told me: "I am only 3ft tall (44 years old) and am in a wheelchair 99% of the time. I use a mobility scooter at the cons mainly because I feel safer in such a huge crowd, and also I get too tired pushing myself around in my chair all day. I can use crutches, but only for very short distances. I have found that most of the cons have had amazing accessibility. Oz Comic-Con being the best. They are really accommodating and the staff and volunteers are all incredibly helpful."

Kellie, in a wheelchair, dressed up in a costume, holding a gun

"I go to at least 2 or 3 cons a year. So far this year I have been to Oz Comi-Con in Adelaide and to Supanova in Melbourne. I'm planning on going to Sydney for Oz Comi-Con in September. I've been going to them for about 7 years now”, she said. "I have made so many friends at the cons - all able bodied people. Its just awesome to be amongst people who have the same interests as you and are passionate about the same things. (And to not be laughed at for it).
Kellie, in a wheelchair, dressed up in a costume, holding a gun
"None of my family or friends here are into the same things I am, so they think I am strange. So its great to be in a place where you feel normal and can totally be yourself. I don't dress up often. Mainly because I can't afford to buy a decent costume. Also I find it difficult moving around in costume and going to the toilet and so forth. I have dressed mainly as Stargate SG-1 officers. You kind of just fit in, and don't feel weird about it. There are so many more intricate costumes around that you just blend in. 
Kellie, in a wheelchair, dressed up in a costume, holding a gun
"I really do love the Cons as I love meeting the actors, and hearing their panels. And they are all so welcoming and friendly. I also love going as I get to see my friends that I have made at them. I even keep in touch with them and see them between cons now. They are the most kind hearted and generous people you could ever meet", Kellie said.

Fitting in - and standing out for the right reasons - is so important for people with disabilities and facial differences. Events like Oz Comic-Con represent appearance diversity at its most voluntary and inclusive. I can’t wait to go!

I am giving away two family passes to Oz Comic-Con Melbourne (two adults and two children per pass to the Melbourne show only). To enter, tell me what you like best about dressing up in costume. Get in quick entries close 5.00 pm AEST Wednesday 17 June. Leave a comment below (don’t forget to leave your email address so I can contact you!).

(EDIT: 18 June - the giveaway has been drawn and winners notified.)

Oz Comic-Con 2015 details: Melbourne: June 27-28, Brisbane: September 19-20, Sydney: September 26-27. 
Oz Comic-Con children cosplayers

09 June 2015

A taxi driver restored my faith.

Last month I went to a conference in Canberra. I was a speaker there. I caught a taxi to and from the airport. 

I had a long chat with the taxi driver on my way to the airport. I told him I am a writer. He asked if I've ever written about taxi drivers. Awkwardly I told him I had, explaining the discrimination I've faced.

"That's bullshit", he said

He told me how ignorant people can be and how they don't consider how quickly someone can acquire a disability or be impacted through a disabled child. We talked about the diversity of disabilities. He also said how he recognises that he is representing his family and country, and it's a shame that discriminatory behaviours can tarnish the reputation of a race.

When the ride ended, he apologised to me on behalf of taxi drivers and his race - though I said there was no need to. What a wonderful trip.  

We thad such a deep conversation. He showed me a photo of his child and wished me a good trip as he helped me with my luggage. I love these small interactions. One person shook my confidence about catching taxis. And another restored my faith in drivers.  

08 June 2015

Winter days and a recipe for apple and pawpaw crumble

flowers at the market
I am loving winter. Apparently it's one of the coldest starts to winter in Melbourne's history - with five degree mornings and days that barely reach the teens. I love rugging up and cooking cosy meals - soups and stews and naughty desserts have been on the menu. This long weekend has been a relaxing one - I've been sore - I've cooked and read and watched movies and lozzed around in bed, reading and listening to podcasts. Lovely. And I've been playing with my new Olympus camera - I am in love. We went to the park today, walking and snapping in the sunshine. Here are some photos - and a recipe :)
carly findlay in a purple hat

I’ve been having fun being frugal with food - buying fresh and whole (as usual) and stretching as many meals out of a weekly shop as I can. Yesterday we went to the market for an hour, and I grabbed some fruit and vegetables - such a big bounty for less than $20.

brussel sprouts and bacon on a chipping board

When we got home, I cooked us lunch. I’d bought a piece of smoked bacon as a treat, and cut off a tiny bit of it to fry with some brussel sprouts , garlic and chilli. I made the meal heartier by adding one chopped chicken thigh fillet and a small sliced capsicum, plus salt, pepper and mixed herbs. So delicious. 
brussel sprouts bacon, chicken, chilli in a pan
Adam didn’t eat his sprouts, so more for me. It’s ok - he gets away with not eating his vegetables when he looks this cute.

Adam in a wolf hat
  Sandra came over for dinner last night and I cooked risotto (chicken, mushroom, zucchini and pumpkin), and also an apple and pawpaw (papaya) crumble.

I bought some beautiful pink lady apples and half a pawpaw from the market. The apples were $2 a kilo - so sweet.  I am not a fan of raw pawpaw but love it cooked and dried.

apple and paw paw on a board

I halved the pawpaw and cut the flesh out of it (including the seeds) like I'd cut a mango. The other half is in the fridge - I might stew it for porridge later in the week. I also cut the apples (skin on). I put the apples and pawpaw in a saucepan.
apple on a board

And then I added two teaspoons of firmly packed brown sugar, one teaspoon or powdered ginger, one teaspoon of cardamom, one teaspoon of vanilla paste, one teaspoon of cinnamon and half a cup of water to the saucepan full of fruit. 

I cooked this on low heat with the lid on until it was mushy. I let it cool. And pre-heated the oven. 

apple crumble ingredients
The next step was to make the crumble. I mixed half a cup of plain flour, half a cup of oats and a quarter cup  each of coconut and brown sugar. I also used 50 grams of room temperature butter and a tablespoon of maple butter. I am not one to cook with my hands, and so Sandra did the rubbing of the butter into the dry mix. Once combined, she patted the crumble mix on the fruit, and I put it in the oven for 20 minutes.

apple crumble and custard

And then she taught me how to cook custard from a packet - just like Mum used to make. Sandra is the best! Such a delicious dessert. We ate it while it was warm, sighing over how good it was.
apple crumble and custard in a bowl with a spoon

It's been a nice weekend. I am easing my way back into writing - am planning to write some posts after dinner tonight. Hope yours was lovely too!


winter sun - royal park melbourne

winter sun - royal park melbourne


01 June 2015

Ichthyosis and pride. A bloggy break.

Photo by Rick Guidotti


As Ichthyosis Awareness Month came to a close, I thought of the stories shared on my blog and across social media - people have been courageous for starting out. There are so many variations of the condition, and so many different experiences.

Many people have not ‘come to terms’ with their condition - hiding it - and that’s ok. Others believe it hasn’t taken over their lives - that they haven’t become Ichthyosis - and that’s ok too.

But it’s also ok to see Ichthyosis as part of our identity, and to be proud to have the condition. Many disagree with me but it affords us so much: a point of difference amongst the clones, a conversation starter, the ability to think and act deeper than the superficial, a great sense of perspective and the option to be part of a supportive, connected community.

Be proud of your identity - Ichthyosis and all. Work at being proud every day. 'You get proud by practising.'

-

This is a busy week at my day job and with writing and speaking projects, plus I put in a lot of work on the blog in May. I'm taking this week off blogging. See you next week. Have fun, be safe. 

31 May 2015

Ichthyosis Awareness Month - my story: "I've built a strong sense of resilience - both through having Ichthyosis and as an online writer."



It’s the last day in May, and that means Ichthyosis Awareness Month comes to an end. 47 blog posts were published in May - and that’s been a great feat amongst full time work, organising the meet, participating in the Emerging Writers Festival, travel, university lecturing, freelance writing and living life (and there have been some tough things to deal with in May). I don’t do things by halves! I’m tired.

While I have not been writing for my own blog this month, I’ve been collating, editing, scheduling and promoting all of these posts (with a little editing help from three people). It’s been a huge job! You can read all of the stories here - and if you’ve got time, 2013 and 2014. Who knows what 2016 will bring?!

I’ve also shared my story on some other blogs this month - readers of The Chronic Ills of Rach, Champagne Cartel and Hair Romance are now more aware of Ichthyosis.

The comments received and connections made through the month have been wonderful. Again, those who’ve written posts felt very empowered. For some, it was their first time telling their stories and this has given them confidence to continue. I am blown away by the reach of this blog project - some posts have been shared on Facebook more than 600 times!

From Mary:
"Thanks all for your comments. This post is part of an awareness for Icthyosis and it's many facets. I have a mild form, caused by a recessive gene inherited from both parents. Who knew!! However some folks have really intense skin care routines needed to stay out of hospital and/or to avoid serious complications. I follow several sites on fb and I am in awe of the courage and tenacity that some people have when facing the daily rituals that help keep them healthy. Again, thanks for reading."
Ashlee, whose son Thomas died from an infection related to Ichthyosis last year, told me May has been her favourite month because she has read so many stories from others, and because Thomas’ life was celebrated:
"I can't thank you enough for sharing our story. You are one of the most selfless, caring and loving people I know. You have such a huge heart for others and you will never know how much you mean to me. The tears just won't stop right now. That was my first time to read our story again since I sent it to you, and this week is already SO hard. We miss Thomas more than we could ever describe. We're so thankful for people like you who remember and celebrate our sweet angel. Thank you! I love you Carly."
Becky wrote to me after her story was published:


"THANK YOU THANK YOU THANK YOU for doing this. It is such a wonderful thing that you do."
Nicole, Daniel’s adoptive mum, said:
"Every day I read these and think, "That's my favorite!" And then tomorrow comes, and I get a new favorite! Thank you so much for coordinating this project."
Anita, whose child has Ichthyosis, wrote:

"We have never met Carly but I do enjoy reading and learning from your blogs yiu are doing such a fabulous job keep it up."
And people who don’t have Ichthyosis have enjoyed the posts - becoming aware of the types and severities of the condition. From Rebecca:

"Thanks for taking the time to source and share these posts Carly. I'm really enjoying the insight, the info and the personal journeys of all the people you've featured."
A friend from my hometown wrote this of Aurora’s story:

"In Australia we talk about discrimination, but we only see it a higher level, sport, politics race and religion, and yet our schools allow bullying to happen at a rate that has not changed sinc my kids were at school some 30 years ago, and in fact since I was at school some 50 years ago it is getting worse. Aurora is a beautiful young woman with a most beautiful smile, and to even consider that those of us can speak ill of someone who from the start was walking up a hill, and yet has the courage to face life with only love and empathy, where has it all gone wrong. There needs to be more stories like Aurora than Essendon."
Thank you to everyone who’s written their story, read the stories and shared them. Some people were so dedicated they shared every single post. It means so much to me and to the contributors.
Photo credit - Amy Cater
I’ve been thinking of life as a blogger and life with a visibly different appearance. And if you are a blogger with a visible difference, the exposure to comments (good and bad) increases significantly. People think they know you, that you're fair game for criticism. Fortunately when I put my blogger hat on, the supportive comments outweigh the negativity and criticism, and people genuinely see me as a whole person. The comments and stares that come my way because of my skin and blogging can be very tiring. Most times, these people don’t know me. And when it’s from within the community, it’s lateral violence.

The Australian Ichthyosis Meet was one of the best things I've done. It was a proud moment when donors got on board to support it, when the first guests arrived, when people smiled and when friendships were formed. I can't believe it happened! Despite the overwhelming positivity, it came with backlash.

While I don’t want to dwell, the criticism I received for the Australian Ichthyosis Meet cut deep. I was accused of exclusion, told I was bragging about my organisation of the event, and that I use my skin to get attention - among other things. It came from a number of people in the Ichthyosis community - their words were bitter, and it says more about them than me. We all have a choice in this world, and my choices are to be happy, to be driven, to make a difference, and not to cut others down for their success. People say we have to take the good with the bad. "You put yourself out there" is often provided as justification for me copping criticism. I do put myself out there, but it doesn’t mean it’s deserved.

I've built a strong sense of resilience - both through having Ichthyosis and as an online writer. I make like Taylor and shake it off, but I won’t lie, it can still hurt. I remind myself of this by Brene Brown:
"If you're not in the arena getting your butt kicked too, I'm not interested in your feedback.”
They're not in the arena I play in. I am not interested in their feedback, and I won’t tolerate their behaviour. The behaviour I’ve been on the receiving end of this month has ensured these people will never be involved in my life or events I organise. I’ve defended myself, my work and my reputation.

The bold contrast of admiration and criticism or discrimination is often present when you have a visible difference. I saw this On Thursday, when Mui (who has Harlequin Ichthyosis) posted a Facebook status about discrimination she faced in Hong Kong. She said a bus driver wanted her off the bus because her face made him want to vomit. That level of discrimination makes me so sad and angry. Mui (and so many others with Ichthyosis) endure these events regularly. Mui’s parents have since made a complaint to the bus service (that driver has often been sacked for similar behaviour).

And earlier that day, her story was being shared on popular women’s opinion site Hello Giggles - she’s being lauded as kind and inspirational. What a contrast. What a star. I hope Mui continues to receive praise and compliments than words of disgust. She has received so much support these past few days.

Mui’s parents said:
"Why write a book? Because of recurring ignorance like last Thursday on the minibus.”.
They told me that they’ve written a book to address the discrimination and cyberbulllying Mui regularly faces. You can read their story on their blog.

And their reason is why I blog too. I want to highlight these incidents, that happen to me and to others, as well as share the celebratory ones. I want to show you there’s a dark side to writing a blog and organising an event that helped so many others. Fortunately that dark side doesn’t present itself too often, and I will continue to be proud, build communities, provide education and make friends. And I know I won’t win everyone over - as Pip writes, I don’t need to. I have amazing people around me - near and far.

In my introduction post for the month, I wrote about creating the thing I wanted to exist. I created the first Australian Ichthyosis Meet on my own, with the help of some others. I set my mind to it and I did it. Maria said:
"I am proud of you Carly Findlay. You have managed to not only organise a successful gathering of beautiful people but the way in which you did this ensured that we walked away with friends forever. Well done Carly."
Eleanor said "It was life changing! xx" and Rebekah said "We all made new best friends for life xxooxx"

And that's what I stand for. To bring people together. To make them feel valued. I can use this blog to create positive change. And I have. I'm proud and won't be quiet about that.

If you find others pulling you down because of the way you look, or for being happy with yourself, or for being proud, or for defending yourself or for being assertive following a rude comment, ignore it. Hold your head up and continue being true to yourself. Be the better person. Ichthyosis is such a rare condition and so many people don’t experience the comments, stares and discrimination first hand. Those critics are often not in your arena. And if they are, you don’t need them.

Thank you for being a part of Ichthyosis Awareness Month 2015. It’s you I’ll focus my energy on, it’s you I’ll remember.


May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.
Be social: follow me on Facebook, Twitter and Instagram.

30 May 2015

Ichthyosis Awareness Month - Robin's story: "If you look around you can meet wonderful people."

Tonight is Robin's story - the last for Ichthyosis Awareness Month. Robin writes of life with Lamellar Ichthyosis. She has three children who are fiercely defensive of her, which makes her so proud. She also mentions the severity of Ichthyosis - last year she had an infection so severe she almost died. 

Meet Robin.



"I am forty years old, one of three daughters and the only one with lamellar Icthyosis. I have been married for 16 years now, with three children of my own, none of them have Icthyosis. I also have one grandchild who does not have it either.

I was born with lamellar Icthyosis, and until I became an adult I didn't realize how lucky I was to have wonderful insurance and health care. I had a skin graft on my eye when I was 15 that made me being different a lot worse. The graft looked great, and has lasted for 25 years. 

I have had a lot of self esteem issues, but as I grew up I found that if you look around you can meet wonderful people. 

I have lived in Iowa most of my life. I do not tolerate the heat so I spent most of summer inside. My childhood was rough, kids are very mean calling me names like dragon and snake girl.
People would ask if I was in a fire. I remember once a lady asking me when I was about 10, checking out at the store, if I had been in a fire, and I looked at my dad behind me and said yes, and that the rest of my family died. I really do not understand why people feel they have the right to ask such questions to people, especially to a child. 

My sisters were wonderful to me, for my whole life. I am so lucky to have them and their love. As I grew, my skin got better and people said they didn't really notice it, but I am not sure if that is true. The words that were said to me as a child changed me and left its mark on me forever.
I raised my children to never look down on people that are different, and they are amazing. I remember when they were like 5, 8 and 11 and someone said to them "what is wrong with your mom's skin?" and all three of them yelled and said "don't you ever talk about my mom skin! She is beautiful!" I have never been so proud of them. 

So I have used several oral medications, lotions, ointments sun therapy and injections. In my thirties my skin changed like never before and I found out I had Psoriasis. My dermatologist said that is just cruel to have to these skin conditions together. So it has been difficult treating both skin condition. Last year I got a bad infection, but didn't have insurance and waited too long, and ended up in the hospital and was told I almost died. 

With my skin, infection can get in the body easily, so after a week in the hospital I was told I will not work again, and to apply for disability. So I did, and of course was approved, and then several months later I found out that I had Socratic arthritic, so my treatment is ever changing but after joining the FIRST page I realized how lucky I am compared to others."

This post was edited by Tash. Follow her on Facebook and Twitter.


May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

Be social: follow me on Facebook, Twitter and Instagram.

Ichthyosis Awareness Month - Mary's story: "The relief of finding other people with similar skin is very liberating."


I met Mary around two years ago on my Facebook page. Mary has Ichthyosis Vulgaris. But at the time we chatted, I didn't know it. She was friendly, joined in on lots of discussions and offered compassion and the occasional empathy about skin pain. One day, when I was in hospital, she sent me a private message, offering gentle advice about my skin - the intravenous site to be specific. I had experienced awful pain around the cannula and Mary suggested an ice bag. I thanked her, but still  I wondered how she knew so much about Ichthyosis. And so I asked her. She told me she's in her mid 60s, a retired nurse, and she believed she might have Ichthyosis. We chatted a while longer, and soon after that, she went to the dermatologist for a diagnosis. 

I am so glad she's found a community and knows she's not alone. I'm glad to have played a small part in that. 

Meet Mary. 



"Hi, my name is Mary and I have Ichthyosis Vulgaris. I was self-diagnosed several years ago and confirmed it with the dermatologist within the last two years. My story regarding my skin and the diagnose has been one of confusion, guilt and curiosity.

I'll start with the confusion. My mom told me that two weeks after I was born my skin peeled in sheets. She was frightened and did not know what was happening. My mom was told to put mineral oil on to help keep my skin moist, but she was not given a name for the skin condition nor was she given any other advice or treatment schedule. Science had not come up with a name for my skin condition and the doctor was unfamiliar with it as well. I contracted a staph infection before leaving the hospital and my constant infections and bleeding skin kept my mom busy. The next few years were full of colds, eczema and allergic reactions.

Starting grade school was full of challenges and illnesses. My eczema was in full bloom and the elbows and knees were breaking out in angry patches of itch. A family doctor prescribed a black tar type ointment which needed to be applied and then wrapped in strips of cloth. The first day of treatment was done and I was sent off to school for the day. A huge problem ensued for me. Kids started laughing and pointing, the teacher was trying not to laugh while asking why I had such wrappings and black stuff on under the wrappings. The wrappings were falling off because they could not be taped to my skin. I was crying. It definitely was not my best day.

I went home and told my mother that I was not going to school like that again. I had been scarred by the experience. It was bad enough being coated daily with mineral oil and all the problems that went along with that. I was not going to wear rag-covered medicine again!

I found the summer heat to be so uncomfortable. Why was I always so hot when others were not. Why did I need the mineral oil even in summer? Windy days made things worse because dust and grime would cling to my oil-covered skin. Oh, and then there was the problem of eczema oozing and neighbors' pets wanting to lick the wounds. Don't get me wrong, summer was fun and I have plenty of fond memories, but I also had issues no one else in my circle seemed to have and I did not know why.

Unfortunately there was a lack of understanding within the family I grew up in. Acceptance of my skin and general health issues were difficult for some in the family. The constant cough, the flakey skin and the infections caused tension and impatience with some folks. I was called "fish scales" and told I was not clean and that was why I got skin infections so frequently, and I was lazy. I was told to stay away from certain individuals when I had a cold and shunned if I had an infection. You know that saying "What doesn't kill you makes you stronger"? Well, I am all about it :-) Fortunately I had some individuals outside the family who were nurturing and caring towards me.

So much for the confusion growing up. High school was better. I was healthier and my skin on my face was actually getting compliments on how smooth it was. Wow! But my confidence was not strong and I had a difficult time trusting or believing people when nice things were said to me. The eczema was still a big issue but instead of being made fun of people were more curious or wanting to be helpful. Life was getting better. But I still strongly disliked the heat and would still try to cover up even in the summer to hide my skin. I wore pastel colors only as it would hide the flaking scales. The guilt of being different was not going away easily, but determination and the drive to be positive definitely were strong and getting stronger.

Romance and love arrived when I met my husband. After dating for a while he said he never noticed when I had mascara on or off, let alone anything different with my skin. He just saw me and my smile. Wow :-) We married and have four children and three grandchildren. So sweet! 

When I was about forty years old I was sent to a dermatologist for another skin issue. My primary care physician said the dermatologist would also help me with my skin. Amlactin 12% was recommended and when I asked what was with my skin I was told it was just very dry. I was too busy with life to ask why and I lacked the skills to ask questions. That would change.

Enter the fabulous age of being sixty-plus, computers, and even more dry and flaking skin. Searches on the Internet brought up FIRST. It was hard for me to believe that this organization really existed. I had to keep searching to believe what I was reading. More searches brought up stories of people with skin just like me! I was so happy to finally belong! Then I found Carly and the Tune Into Radio Carly blog. So. Much. Caring.! It still took me two more years to confront my dermatologist about my skin and a diagnosis. I had put all my symptoms together and I left my skin untreated before my annual appointment. I finally had conviction that I had ichthyosis vulgaris and the courage to demand to be heard. Yes, said the dermatologist, I did in fact have IV. I told her how great it was that I know knew there were people with the same skin. I also told her how I struggled to understand my skin, allergies and asthma. Now I had an answer and I felt empowered.

The relief of finding other people with similar skin is very liberating. I am very fortunate to have caring people in my life. It has allowed me to develop important qualities such as empathy and belief in myself no matter what. I am a quiet person but I am still curious. Guilt and confusion have gone away. I wear dark colors now and don't care much if I am having a flaking moment. I would not change my experiences because they have all brought me to where I am today. 

As my son once said "Mom, your skin is just part of what makes you you." He was and is correct. Life is definitely good! Thank you for reading my story. And a huge thank you to Carly, her blog, and her caring advice."


May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here. 

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