I'm on holidays. A staycation now and a short vacation tomorrow. It's been nice - I've done some writing and pitching, some travel planning, some cleaning, and some napping. I've also been trying to exercise regularly - going for walks and doing squats and sit-ups. I walked to the post office and back yesterday - it's around a kilometre, and including talking to three friends and waiting in the queue at the post office, it was a 45 minute round trip. In that time, one man slowed down to a stop to have a look at me, and a lady pushing a little vinyl-covered trolley stopped me to offer me a pamphlet titled 'A prayer to stop your suffering'. I smiled at the lady, politely refusing her offer and walked on. I also waved on the man, telling him to keep driving, that there's no need to stare.

These incidents, while occasional, don't upset me. However I do take issue at people forcing their religious beliefs onto me, with no background knowledge of my condition. There's no cure, and I don't need a 'better' life, thanks. (I have written about why I am not religious previously - this has a lot to do with how religious people have treated me over the years. I understand that some of my readers may be religious, and some people do ask for prayer in times of need, and I respect that.) Friends - with Ichthyosis and with other conditions - have told me they've experienced similar - unwanted healing hands, advice about faith healers and being made to feel guilty for being human.

Good intentions can be rude and presumptuous. I hate that people think my life must be so bad that I need prayer and pity from strangers. I hate that the prayers they offer may be attached to a sense of personal guilt about feeling uncomfortable around me. Especially when I'm clearly not suffering, I am just going about my day doing the things that they're doing too.

I get the sense that strangers believe we need to be granted forgiveness from past sins, to be healed of an infliction that is seen to be grotesque, and a great condescension - just like a pat on the head, or an "it's so good to see someone like you out and about" comment. I also think that a lot of what people say to us is because they're pushing their own insecurities onto someone else.

I feel there's an expectation that because of such misplaced good intentions, and especially because the religious aspect of the situation, that I will be polite. Because religion is associated with kindness and charity. And so I am polite - I just walk on and smile. But these misplaced good intentions - sheer pity - are rude, intrusive and condescending.

I would much rather the people who offer healing prayers put their good intentions to good use and physically help people in need - maybe working at a soup kitchen, volunteering in a hospital or donating food, toys and clothes to a charity organisation for distribution in the community.

(Source)

 

Of course with every pitying person comes many, many polite people. I'd much rather a person say hello and smile than clumsily showing me their misplaced good intentions. My life is no less without religion or unwanted prayer and pity, just as it's no less with Ichthyosis.

(The Matter with Megan has written a much more articulate post about being prayed to, to cure her of her rare skin condition - you should read it!)

(And yes, the situation in that video has actually happened - numerous times - only in reverse. Ridiculous isn't it?)

 

A little while ago I was tweeted at by Ashely Ide, a British man, raising awareness about visible difference. His son Ashton, has Sturge-Weber syndrome - which means he has a large birthmark to 85% of his face. This syndrome also causes seizures.

Ashley has written a book to educate children about visible differences - you can find out more on the What's That on Your Face? facebook page and consider donating to his cause to get the book published. What a wonderful gift from father to son!

Here's Ashton's story, as written by Ashley:

"On the 26th November 2007 I became a dad and had a beautiful little boy, he took a while to come into the world and caused his mum a lot of pain, we was delivered by ventouse and had extensive bruising.....or so we thought, however that bruising later turned out to be a birthmark, we were obviously devastated as you expect your little bundle of joy to be perfect, he had an extensive birthmark that covered more than 85% of his face and head.

We were reassured by the paediatrician after they told us there could be conditions related to the birthmark but these were very rare.

We later learned that Ashton was born with Sturge-Weber syndrome a rare neurological condition characterised by a facial port wine stan (birthmark) it is thought 1 in 50,000 get Sturge-Weber syndrome (SWS) however diagnosis varies for each individual due to the lack of awareness of the syndrome. Ashton's was picked up early and diagnosed at 2 months old after an MRI scan, many others go undetected until the onset of seizures.

SWS is a progressive syndrome and comes with an array of disabilities, glaucoma, epilepsy and learning delay are among the most common, paralysis and reflux and mini strokes are also among these, it is unpredictable as each child is different and severity varies.

Ashton started his seizures at 2 1/2 years old although he did have vacant episodes before this, he is on epileptic medication which keeps the majority of seizures at bay however he has had 2 episodes of status epileptics lasting more than 2 1/2 hours and 4 hours which has been very scary, he attends great ormond street hospital for the SWS clinic and as he has glaucoma in his right eye which he has had an operation on to prevent him losing his sight, he has daily eye drops to keep the high pressures down, and they are closely monitored.

Up until Ashton's recent 4 hour seizure he has not had any lasting affects, however he now has a slight weakness and lack of gross motor and fine motor skills in his left hand side, this can be challenging for Ashton during sports and class work as his coordination is not great and becomes tired faster, his seizures seem to be controlled at the moment but we know with the condition that its progressive and it's a matter of time before the next seizure occurs, he has small seizure quite regular but we control these with his rescue meds which have thankfully worked for him.

Ashton has recently had many vacant spells and is struggling through school, he becomes very lethargic with his condition especially when he's having periods of clusters of seizures.

Ashton has always been very confident regarding his birthmark but we have always noticed stares and people always make rude comments or ask what's that on his face, we have also had people ask how has he burnt his face? Who hit him to make him all bruised and why didn't you put sun cream on him? We don't mind people asking us about Ashton and what's on his face, we're happy to explain and educate but its people's rudeness that really bothers us.

Ashton started to have laser treatment on his face when he was two years old which was advised as the birthmark can grow and become tumorous and blotchy, it's a quick procedure under general anaesthetic but leaves very prominent bruising in the shape of small circles on your face, Ashton calls these his cheetah spots and they make him run faster, he definitely receives a lot more attention and stares after he's had this but it's never bothered him until recently.

Ashton started school in 2012 and this is when we noticed a difference in Ashton and that he was more aware of his appearance, he has made comments about people calling him names and talking about his birthmark, we have always encouraged Ashton to be open and tell his friends what it is and he now does, he also tells them after laser surgery he gets special cheetah spots and they make him run faster, his friends live this and think its great.

He still gets the odd child make fun but he knows to ignore them because they don't understand. We have worked close with his school to educate the children about facial differences.

Ashton has inspired me to educate children about facial differences and to raise more awareness and acceptance, I have written a children book called "What's that on your face?" about a boy with a facial birthmark and his first day at school. It's inspired by my son and his experiences, and is a fun engaging story that emphasises that everyone is unique and special in their own ways.

I'm working with a fantastic illustrator Jo Larsen-Burnett who has been doing some great promotional drawing for my book. She has an amazing imagination and some fantastic ideas as you can see below from her work.

My aim is to get this book into as many schools as possible to raise awareness and educate children to accept differences and emphasise that everyone is unique. I also want it to be used and recommend by healthcare professionals to help families and children's siblings understand more.

The book includes a girl that is blind and a very different kind of teacher and a ginger boy with freckles, but I would love to expand on this book and create a series to cover more conditions and syndromes to raise more awareness."

For appearance diversity resources, visit my resources page. If you'd like your appearance diversity story featured on my blog, contact me.

 

Blog home

 

When you do things that are fun, it doesn't seem like work. I recently heard two influential writers - Tavi Gevinson and Khairani Barokka - talk about only wanting to do things that are fun in life. Perhaps to a non-creative, this idea sounds a little immature and selfish, and dare I say it, a high sense of entitlement. How can one get through life only doing the fun stuff? I realised that I feel the same way. I only want to do the things that are fun and that interest me. I want to love what I do. It's about creating personal happiness, curating a life I want to live, and limiting stressful situations, therefore reducing the likelihood of getting sick. When I'm happy I'm well (mostly).

Wanting to do fun things means I can do the things I'm good at most of the time. Does anyone want to do things they're not good at? I hated my undergraduate degree (Bachelor of eCommerce) because I wasn't good at it. It was hard and there were a lot of concepts I did not understand, I was not really interested in the subject matter (I could not see how I'd ever apply economic principles or calculus to my life or future career), and I didn't get good marks in all my subjects. It was not fun. Fortunately I stuck this degree out and it was the pre-requisite for a graduate program position. Which was - surprise - not fun for the most part because I found it very hard and I wasn't so interested in the content. (A few years after I commenced the graduate program, I won a job that I really enjoy and am good at - which has genuinely made a positive difference to my health and happiness.)

Then I went to study a Master of Communication. I got to choose most of my subjects (and a lot of the topics for assessment), I was interested in all of my subjects, I saw how this degree applied to my day job, goals and areas of interest, and I was good at all of my subjects. It was fun. I would spend hours reading or listening to podcasts for assessments, going above and beyond, and I now miss the prescribed learning.

Of course there's still a fear of failure (I often have performance anxiety prior to writing), but it's not the same dismal failure as the time I got 40% in a super hard maths exam in year 11. I did find that I placed a different sort of pressure on myself during my postgraduate study - I wanted no less than a distinction, because I was working hard, was interested in and enjoyed the subject matter and knew I was good at the degree.

But I think choosing only to do fun things is limiting. If I am honest, I have probably stifled my day job progression because I am very picky about jobs I apply for. If it looks like something I won't enjoy, or I wouldn't be good at, I won't apply. A friend said she won't apply for jobs unless they look amazing. I guess there's a sense of entitlement that comes through. I think, I've worked towards a goal, am achieving that goal, and don't want to compromise success. And fun work is not necessarily about play - it's about doing something that's meaningful, makes you feel valued and doing something you enjoy.

And perhaps doing fun stuff all the time is not sustainable - hence the need for a day job. Does fun become unenjoyable when activities become chores and you find yourself struggling to pay the bills? I expect so. Cate, a crafter and writer, says "The stuff we love to do often becomes a chore when we stop doing it for ourselves eg writing for others without time to write for ourselves."

I sometimes struggle with performance anxiety - scared of starting (especially when I'm being paid - what if my work is not good enough?!) - and when tiredness sets in, writing can feel like a chore, especially on top of my day job. Sophie, an artist who makes jewellery at That Vintage, says doing what she loves as a career can become a chore. "I take some time out from it (a little "holiday") and come back when I feel it is right", she told me. Amelia, writer and artist, sometimes feels this too. "I give myself a break. Start something frivolous. ...remember why I love it. Go through old work. Re evaluate", she says.

There's also a level of homophily by limiting myself this way. How will I know that I won't enjoy something until I've tried it? Maybe I'm stuck in an echo chamber of fun, cushioned by enjoyment?

And I wonder whether it's childish of me. Don't all children only want to do what's fun? As a child I'd rather be playing than tidying my room - and as an adult, this is still the case. I do put off these not so fun tasks - paying bills online so I don't see my bank balance, and doing everything else before cleaning my room.

I try to justify my need just to do fun stuff by telling myself life is short and time is precious. I look at my friends who are making art, writing books, styling and photographing clothes and cooking - all creative types, all enjoying what they do and working damn hard too. I am also a creative type. Creativity is fun - it's like play. And it's not like I don't want to work hard - I will work hard, but I most want to work hard doing the things I enjoy.

What do you think?

Do you only want to do the fun stuff?

Will I grow out of this or do you think it's a Gen Y trait?

And is the desire to only do fun stuff limited to creative fields? Do maths lovers feel this way?

 

 

 

The more I blog, the more I keep to myself. In my experience (and also of other bloggers I know), being open and vulnerable is what draws readers in. Readers resonate with what they relate to, I guess. For me, blogging has moved from a diary structure ("today I went to...I did this...I felt that...") to more of an exploration of my thoughts/writing about concepts and issues I've experienced or feel are important/occasionally sharing travel, music or food experiences. Of course my blog will always be about me but I want it to be about broader concepts.

Lately I've been bumping into more people who know me through my blog. I've written about the knowledge imbalance before: readers know so much about a blogger, yet unless that reader is another blogger or a friend, the blogger does not know so much about them. I love meeting readers, but I'm still not sure what to make of the knowledge imbalance. It is mostly guilt for not recognising them their twitter picture when I meet a reader in real life. And then I realise they know so much about me. I sometimes write forgetting that I have an audience. There was a time I was out for dinner, I posted a photo on Instagram, then queued to buy a drink, and a blog reader near the counter squealed saying she hoped she'd meet me because she saw I was at the restaurant too. That was weird. And a dose of reality about how much I reveal about myself. (Related: I have this strange fear that one day someone will comment on how much I eat and tell me to cut back, based on my food pictures on Instagram!)

I've also been so conscious of how bloggers are judged. Not that what others think of me should matter, but I am constantly reminded of how much or little readers (especially hate readers) expect a blogger to give of themselves, and how we never really know of a blogger's life outside of what they blog. (On this, my friend Kerri Sackville wrote a beautifully honest piece about her breakup and how she's so guarded online, as well as mindful of the hate forums.) And then I received that comment with some friendly advice that it's not realistic for me to find a lover who will cope with my illness. Yeah that. That sort of pushing of one's own issues onto me made me withdraw somewhat.

Two, three years ago, and even last year, there was a lot of writing about love and subsequent heartbreak here. I was always mindful of how much I revealed, so I wouldn't be at risk of rewriting Jagged Little Pill, but more so, to protect him. Writing through that time was good therapy. Except when I actually needed to see a counsellor and that was good. Because I couldn't write everything here. (I told the whole story aloud to a friend the other week. It sounded so sad. I listened to every word I was saying, and made a vow - "never again".)

The more time that passes, the less I need to write about that period in my life. That's not to say I dont still think of him, I do. It's a year this week since I said goodbye to him, and I realised recently that at the time, I didn't even feel that I could write that goodbye here. I wrote it on Kiki and Tea instead. I either didn't feel the need, felt that all that was said could be said, or it was a decision to keep a little more of me to myself.

And it's also been a long time since I've written about matters of the heart here. Or "boy crazy", as Tash teases me. There's a lot of just focusing on making my life a good one on my own and with good friends, and so I haven't given boys too much thought, and a little of a lack of boys I've been crazy about. For a while I wondered whether I'd ever feel that same love again. Maybe I will, but I don't want it to be that way again.

I've made a very conscious effort not to get wrapped up in words, rather to observe and then appreciate people's actions. It means more when people treat you well, than reeling you in with loving imagery and properly formed sentences and then writing that they'd wished they'd treated you better.

Anyway, right now, I have a crush. It's been for a while actually. He's taking up a lot of my thoughts. I am bursting with words, but I'll write very little. He's the loveliest. I want to wrap this feeling up and put it in my pocket closest to my heart.

Often, things are nicer left off the blog.

Do you find the more you blog, the more you keep to yourself?

Do you have a crush? Isn't it wonderful?

 

A couple of weeks ago I met baby Matilda and her mum Cheryle at the Royal Children's Hospital. Cheryle and I have become friends very recently - Matilda is a newborn baby with Ichthyosis. Cheryle has been reading my blog for a while, after a search for Ichthyosis support groups. She's connected with a lot of other mothers of children with Ichthyosis world-wide, too.

When I met Matilda and Cheryle, Matilda was nine weeks old. She's not yet been diagnosed with a specific variation of Ichthyosis, and she was in hospital for an infection. They were far from their family, and Matilda is too little to articulate how she is feeling. I knew that this transition to life with Ichthyosis would have been overwhelming for Cheryle. So I offered to stop by the ward for to give them some company.

I was there for an hour, and we talked a lot. A little about Ichthyosis, a lot about life as a whole. Cheryle went to warm Matilda's bottle, unexpectedly putting Matilda into my arms. She was crying to start with, but after a few minutes and walking around, she became settled, snuggling into my chest. (I told Cheryle that was hoping that she wouldn't spew up on my shoulder as I had a brunch date immediately afterward, hah! Lucky Matilda didn't!) It was lovely. I looked at Matilda with so much hope and wonder, knowing she's going to change the world.

Matilda is so precious - a tiny little girl (she's having trouble putting on weight - failure to thrive is a trait of Ichthyosis), with fragile skin on her face and body. I wondered how much it hurt when I touched her. I was very gentle.

I've not met many parents of children with Ichthyosis in person - only Julie and Danny, parents of Jack, but I have met quite a few online. I hope to show them a positive example of an adult living with the condition, give them some hope for their child. But I am always mindful that (like me) they're taking things one day at a time, and they are not sure what to expect with such a rare and severe condition that's probably unexpected. I hope not to be unrealistically positive, especially when it's likely they're experiencing a sense of grief and fear of the unknown future. I always say "life will be hard but it will be ok", and I firmly believe that. It has been that way for me.

My awesome new friend Jax, (who writes amd reads beautiful poetry about disability) has started to connect with children with Cerebral Palsy, and their parents. She said this recently:

"I am saying to the parents, I dont have all the answers, but I have passion and am willing to explore things with you and that know that for me disability provides the chance to live an interesting life, to meet different and intriguing people, to see the world and people from a different perspective and to be in a body which is very much unique."

I feel exactly the same way when I write about life with Ichthyosis, and especially when I engage with new parents. Thanks Jax for writing what I feel.

Jax, Cheryle and Matilda have given me some inspiration (and confidence) to offer my services as a contact for parents of children with Ichthyosis, and perhaps other young people. This week I am visiting my former dermatology nurse at the RCH, and talking to the group of dermatology nurses there, as well as being a contact for parents.

Cheryle wrote about my visit:

"You have been an amazing support for us, and showed me despite how scary and frightening this is right now she is going to be an amazing young woman with a bright future despite her visible difference. If you can share that with only a 1/4 of the parents you meet it's an amazing thing."

I think it's really important for parents to have some support from adult patients with rare conditions - we've experienced a life of both challenges and celebrations, and often know as much as doctors and nurses specialising in treatment of our conditions.

Like Jax, I don't have all the answers. I can't tell you what creams will cure your child or even how to handle bullies.

But I can tell you how the condition makes me feel - how my eyes get stringy and that sometimes a good sleep in a warm bed is just what I need to calm my skin when it's sore, and that I love waking up each day knowing something good is going to happen. I can tell you that instilling a sense of self-worth and self-belief, resilience and the courage to dream in your child is as important as all the medical treatments you all go through. And I can tell you that life with a visible difference can be a blessing.

Matilda is a beautiful girl and I hope that when she's old enough, she'll pick up the phone to have a chat. We can chat about Ichthyosis and we can chat about lots of other things. I wonder what my life would have been like if I'd had an adult role model with Ichthyosis when I was a child?

If you'd like to get in contact with me to ask me about life with Ichthyosis, you can send me a message on Facebook or via email.

 

Blog home