'Does your disability stop you from sucking c-ck?' and other online dating disasters

This post contains many instances of the word fuck. And cock too. They're not my words, only quotes. If this sort of language offends you, don't read on. But I suggest you do for a laugh and a cringe.

We no longer have to audition for a reality TV show to be rejected, ridiculed and harassed. We can get the experience using an online dating site. Who knew this sort of humiliation and superficiality would come so easily?

So I reinstated my online dating profile. As a friend told me, the quickest way to get over someone is to get under someone. Or on top. Whatever you prefer. I signed up to a free site - hell, it's well and truly justified why I won't pay for this experience. Maybe that's what I am doing wrong. Maybe I should pay for better members?

I'll say this up front. I haven't actually been on any dates. I nearly had one. We texted for two weeks. He was nice. And then nothing. With most of them, I just can't seem to get past their ridiculous online nature.

In the online dating world, words have double meanings. Fun means sex. Looking after yourself means slim and probably hair free. Easy going means lazy. Laid back means apathetic. And accepting usually means they're not. And people are VERY bad spellers.

I have stated that I have a disability on my profile. I have used my picture. Not photoshopped. The real me. This often results in instant rejection. I am not their type. But it's usually when I manage to be 'accepted' by another member that the problems arise.

Here is my profile

Never judge a book by its cover. Or a girl by her disability. If you take the time to get to know me, you will find out I am one of the most fabulous, fun and interesting people you will ever meet. I am a stylish, kind hearted and outgoing writer and TV presenter seeking friendship, romance and love.

I am a friendly, outgoing woman living in Melbourne and enjoy good food, cooking, comedy, seeing live bands, movies and fashion. I love to write - I keep a blog where I review concerts and restaurants.

I work full time as an events planner, and am a freelance writer and community TV presenter on the side. I am passionate about making a difference in the disability community.

I am very happy in life and am seeking that special someone to share it with. I am not your average girl.

Just by the by - I saw and avoided two members who had interesting profiles. One wrote "Are you retarded because you look pretty special to me?'. And  another was called 'Gspotstimulator'. Classy.

While I have managed to filter through some nasties to chat to some quite nice men (usually the more alternative types), the majority have just been weird. The ones that initially seem ok often are socially inept, isolated or unemployed. And the confident ones...wow.

I have  had two members tell me they want to marry me. They don't want a girlfriend. Just want a wife.

And the rudeness. Wow. I am astounded. It's like the site gives people permission to behave like complete pricks. Of course, they are thinking with their penis. And so all manners are left in the 'real world'. If these men were saying the things they do online in the 'real world', they'd be up for sexual harassment, or perhaps assault. It is appalling. And sometimes laughable. Men are throwing myself at me. Not in a good way. None are my Prince charming.

Most members are just after sex. Or 'fun'. And so this desire gives them licence to ask whether I masturbate, whether they are the hottest man I've ever seen, whether they can show me themselves on webcam ("you make me sad :(" when I said no.), whether they can meet me between 7-9 to discuss sex or marriage, and whether my disability still means I can suck cock. Yep. All true stories. And yes, I have deleted and blocked all of those members.

The conversation that takes the cake was this one. A rather cute guy said he liked my profile. Good start, I thought.

I told him what I do. My day job. That I am a writer and a TV presenter. He said, probably ignoring what I told him, "are you interested in meeting up for some sex?". No. 

Then he said "I may want a relationship in the future, but for starters, I just wanna fuck you".

Wow. Flattering. Forward. Gross.

He asked me what I did again. I told him again. A writer and a TV presenter.

"Now I really wanna fuck u" he said. "I have never fucked a TV presenter before. That would be fucken mad as".

OMG.

And then he asked for my number, and said "I have seriously never fucked anyone famous".

Charmer.  Be still my beating heart.

Share your online dating horror stories with me. 

If you can't say anything nice...

I was recently at an event with my parents, not knowing many other guests there, surrounded by pretty young things wearing gorgeous dresses. I glammed up for the occasion too - my pink Cinderella skirt from St Frock, and my silver jacket and floral top that I wore to the AusBlogCon (though I always seem to feel really overdressed due to the amount of layers I need to wear!).

While I was talking in hushed tones with my Mum about how beautifully dressed some of the girls were, it turned out some of those beautifully dressed girls were talking in hushed tones about me too.

Later on in the night, after a few wines, I went to the toilet, and got talking to a girl I met on the way. We talked through the toilet walls, small talk - that we liked the food, that the event was a great one, that our shoes were killing us.

Then, out under the fluorescent lights as we washed our hands, the girl turned to me, looked closely, and said "so what happened?". What happened to my face, she meant? "I was born this way", I told her. "And what happened", she asked again. Drunk people can be hard to reason with. "I was born like this, that's what happened", I told her, again.

She asked me if it was a skin condition, I said yes, and I told her the name. Drunk people are also quite honest. "I thought it was a skin condition", she said. And then she added "The people I am with were arguing about whether it was a burn, or sunburn all day".

Right. So while I was probably complimenting some of those girls, they were discussing my appearance.

I know this happens. People ask me all the time. People stare. People ask friends or family or colleagues what is "wrong" with me. it's curiosity. But I didn't even think people would be spending more than a few seconds thinking or commenting about my appearance or discussing appearance in general in a negative way. Certainly not when there's so much beauty and fabulous personalities and wonderful acts of kindness to compliment. And I thought about the shallowness of being so image focused.

I went back into the room happily laughing with the girl I met in the toilet. We went on to discuss the cute boys in the room, arms linked like old friends. She wasn't meaning harm. But it our toilet discussion left me feeling a little self conscious, and got me thinking.

Is it ever appropriate to negatively comment on someone's appearance (how they look or dress, or their race or disability)?

When I think about my own behaviour, I can guiltily admit that there has been times when I've said quietly to a friend "what is she wearing??", or even made a comment about someone's weight. I know. I shouldn't. But it is rare. And the comments never turn into a conversation. It's an instant reaction, and I wouldn't then give their appearance a second thought. And I'd certainly never make judgment about someone's face, disability or race. Never.

My Twitter friends gave me their opinion about the appropriateness of commenting on appearance (and their opinions made me proud):
@mscurlypops: my motto is that if you can't say something nice then say nothing at all!

@KITsDad: No. Unless they're a hipster, then go for it.

@keepcatebusy: don't undrstd why any1 would ever want 2 say something nasty abt some1 else. Ppl only do that 2 make themselves feel superior
 
@_jaime_: when they're wearing socks and thongs -yes. :)

@rhiannoncra: No. Have your opinion, but don't voice it - if you don't have anything nice to say, don't say anything at all!

@Aneets1: Never. It seems a lot of people lack basic manners. x

@pomegranitaa: If their fly is undone or tag hanging out = yes. If you don't like their shoes or think they look slutty = no.

@Denwise1: never appropriate. Ever. "if you can't say anything nice don't say anything at all is old maxim" So hope not 2 u

I tweeted to Sydney Shop Girl "Seriously, when did negatively discussing someone's appearance outside of gossip mags become a valid topic of conversation??"

Glossy mags thrive on the way celebrities look. They criticise, point out 'flaws' and persuade readers to aspire to an ideal. Too thin, too fat, too much cellulite, acne scars, best diets, beauty treatments are the secret to happiness. Hell, even my appearance was (positively) highlighted in a women's mag. Image sells.

I was thinking about the way we encourage positive body image in the media. The National Body Image Advisory Group, chaired by Mia Freedman, is an Australian Government initiative, "committed to tackling negative body image from a national perspective, by helping young Australians to build confidence and resilience against the body image pressures that they face.”. The group recently launched new initiatives to promote healthy body image in Australia. These initiatives include the establishment of a voluntary code of conduct for the fashion, media and advertising industries.

The discussion of my appearance at this event made me wonder how far the media has come with portraying a diverse range of people realistically. And wondered whether the media is still giving the public permission to discuss and criticise peoples' flaws. Like the colour of my skin.

It's never ok to negatively comment on the way someone looks. Even telling someone they look tired may be taken as criticism. If you are going to comment on someone's appearance, tell them they look beautiful. Compliments are fare nicer to give people. And I think it's about time the media starts paying more compliments to celebrities' appearances, instead of criticising them. Perhaps this act by the media will mean every day people will be less critical of those who look different.

Bern Morley asks me the tough questions.

My good friend Bern Morley did an interview with me and featured it on her blog last week. Read all the lovely things she wrote about me here.

Bern is a blogging idol, but above that, a wonderful friend. Thank you for coming into my life, Bern.

And this is what I call lazy blogging. Reproducing the interview here. Not really lazy, considering I opened up to Bern about love, sex and shedding skin.

HAVE YOU HAD MANY RELATIONSHIPS?  TELL ME ABOUT THEM:

Four I guess, maybe five, but I can’t define the fifth one. Though I loved the fifth more than anyone before.

I guess they've all been problematic - the boys have often had bigger issues of their own then my skin condition. I have been asked if I've settled for people with disabilities because of mine. No, but I have settled for douchebags. 

There was the guy who lied about his whole life, two unemployed ones, one addicted to painkillers who had an alter ego, and one extremely troubled man. Charmers! But I saw good in all of them at the time, sometimes beyond. Sometimes I think when people have bad attributes, the good shines through, like a silver lining.

And there have been a lot of unrequited loves. I loved my best friend for about three years. I'd watch the footy, bored out of my brain, just to be with him! He and I shared a moment, but he told me I was "too fucking special" to him to take things further. Devastating.

Sometimes when I have had a boyfriend I feel like letting those who doubted I ever would have one know. "I've found love! I've had sex! And you never thought I would!" hahaha!

WHO IS YOUR IDEAL MAN?  WHAT ARE HIS CHARACTERISTICS, BOTH IN PERSONALITY AND  PHYSICALITY?
I like a man who will treat me right, is compassionate, understanding and accepting, is intelligent, makes a difference in the world even if it's just a small thing like helping a stranger, and who can have a laugh. 

Physically I like a man who is taller than me, nice eyes and big smile. I like a bit of scruff - a beard is cute. 

When I was younger I really liked boys with long hair and piercings, but I don't know if those characteristics work well now I'm looking in the 25-35 age bracket! I once had a boyfriend with 11 piercings, a chain that went from his nose to ear rings, and had long plaits with a shaved top of head. 

Celebrity ideal men – Callan Mulvey! Sam Johnson. Hamish Blake. Brendan Cowell. Caleb Followill from Kings of Leon

WHAT DO YOU MISS MOST, BEING SINGLE?

Sharing my day with someone. 
Being held at night. 
Knowing things only "we'd" know.

I KNOW IT PYSICALLY HURTS OFTEN TO BE TOUCHED.  INTAMACY IS A BIG PART OF ANY RELATIONSHIP.  IS THIS A CHALLENGE?

Being touched doesn't hurt all the time, except when my skin is really sore. I guess the biggest challenge is being comfortable enough to let someone see my whole body. I'm happy with my shape and size - I got some great assets! But I worry about how they'll react to my skin shedding.

That's probably a big factor in me preferring to be intimate with someone I love and trust, and who is understanding, rather than casual encounters. Sometimes I wish I was more inclined to pursue casual encounters, but the emotional effort for me is so great when starting any relationship that I'd rather expend the energy cultivating a more meaningful relationship. 

DO YOU FALL FOR WORDS OR LOOKS? A COMBINATION?

Usually it starts with words. I fall for a good vocabulary and articulate writing. I think I had one relationship or whatever it was, based on a year of words (texts, emails, phone calls) and three days physical contact. 
Maybe it is because most of my relationships have started with the Internet.

Words are hard though - you only get a 2 dimensional perspective of the person. It is easy to forget they may have values that you don't agree with. And you can also conjure up an ideal.

I think If I have a connection to someone via words, the physical attraction heightens. With Jake*, I hardly took notice of his looks initially, it was all about his thoughts and words. And perhaps because of our connection I thought he was one of the most beautiful looking men I had ever seen.  

HAVE YOU CONSIDERED OR TRIED A DATING SITE?

I have tried many, particularly when I moved to Melbourne. I'm in two minds about them whenever I use them. I want men to get to know me for my fabulousness, but even online there's a superficiality, and despite being honest about my skin and writing about all the great things I do in my life, if they don’t like the way I look, or don't like that I have a chronic illness, they won't get to know me. Even despite their profile listing that they want a girl who is different, and they have a kind heart.

Sometimes I think as 'open minded' people say they are, disability and chronic illness can be too confronting for them. It's like being in a very competitive catalogue.

I have met a few of my boyfriends online though. One on a dating site. The others on ICQ and Facebook - and one at the train station (I dumped him on a train too!)  It's hard to be honest when communicating with someone from an online dating site without it sounding like I'm pleading for acceptance.

WHAT IS THE WORST THING A GUY HAS EVER SAID TO YOU? THE BEST?

The worst:


"your looks and illness are too much of a burden on me" - an Internet date. Didn't go past the first date. 


"didn't I tell you I don't love you anymore" - an ex boyfriend


The best:


My second boyfriend used to be very protective of me and would often be very defensive if people stared or commented. It was chivalrous, but got annoying when he'd be more confrontational than the starer!!


It's also been nice being told "I love you". (of course)


"You are the person I admire the most. Not my favourite rock stars or sports personalities. YOU.
99% of the time I see your posts they are very constructive and mostly of some joy.
I wish I had the courage that you have.


I wish you everything Carly. You are the most beautiful person I have ever met.
When I see the pics of you smiling, it makes me smile."


SO YOU HAVE RECENTLY SPLIT UP FROM SOMEONE.  WELL, FOR GOOD AND YOU ARE HURTING.  WHAT SONG IS ON REPEAT RIGHT NOW?

I don't think it's a break up because as I said, this thing has been so hard to define. (Darren Hayes once sang "how do yo redefine something that never really had a name?") But it is certainly I love/d him more than I have ever felt, and now I feel it's a loss and I feel like I'm grieving.

I discovered I don't have any uplifting songs. They all feel like they've been written about or for me!
Gotye's Somebody I used to know and Adele someone like you have fitting words for the situation.

Darren Hayes - Bloodstained Heart - it feels like he's giving me a hug with this song

Bertie Blackman - Television - I can just relate to the lyrics where she wants to be like everyone else, she wants to fit in, be loved.


IF YOU COULD GIVE THE GUYS OUT THERE A WORD OF ADVICE ON HOW TO APPROACH YOU AND/OR ASK YOU OUT, WHAT WOULD IT BE?

Don't be afraid of the way I look. Take a chance and get to know me to find out I'm more than just a red face. And I hope that you can see my beauty - inner and outer. I am a great cook, love music and will make you laugh. And my boobs are pretty good too! 

We all have wings but some of us don't know why

I am not a religious person, but thanks to some strong support from great friends, and a spiritual analogy, I did some thinking, and I've come to this:

For a while there it felt like it was too big to be a part of. I felt out of my depth in a big adult world. I had some lyrics from a yet to be released Darren Hayes song in my head - “I want to run away from this, but I won't leave a sinking ship”. I wanted to run away at times, but I didn't. I am not that type of person. For a little while I became very important to someone.

I've now gone from being very important to someone, to nothing. Intense, regular contact to nothing. No more text or email alerts. Nothing. Now I feel broken and heavy hearted, and a keeper of dark secrets. I wondered whether it was healthy having so much contact and being so open with each other, when it was always in the back of my mind that one day he wouldn't need me anymore. That day came. And I am devastated. Heartbroken.

For the past two and a bit weeks, I've been so sad. And angry. Fragile. Like a second choice. Left wondering. Feeling used. Worthless. Replaced. I struggle to believe my feelings are valid, because I don't think I've lost anything tangible. What was between us is so hard to define. I guess we both made each other feel good. 

When I am alone it hurts. When I am with people, doing important things at work, my mind wanders to places it shouldn't. My eyes regularly well with tears and my head throbs on the verge of crying. I've questioned my usual fierce independence, wondering if I too have some sort of dependency disorder.

I go to sleep, so tired with unexplained grief foreign to me until now, hoping that when I wake I won't think of him as much as the day before. And then I wake up, body heavy, and my everything is sad, knowing that I'm not on his mind anymore.

I gave so much of myself, and I don't know if I can ever do that again. While just loving him was enough for me, and wishing him happiness, it really hurts when it's at the cost of my own happiness.

I've thought for hours, cried so much, and come to no conclusion. I don't feel like I deserve to feel like this when I was just being a good person. The comfort I have found has come through some surprising spiritual enlightenment.

My Mum told me I can be proud that I helped to save a life. My friend told me I played such an important role in helping to get his life back on track. “Maybe that's why you came to know each other”, she said. “and as hard as it is for you, perhaps that's what you're relationship with him was - you're like an angel that came into his life just at the right time”.

Maybe he came into my life for a reason too. It's been complicated from the start. But knowing him has taught me about human suffering. Reaffirmed my own values. And shown me what loving someone unconditionally feels like. 

And maybe that is what I was. Some sort of angel. If it can make me see some positivity in all of this sadness, just for a few minutes a day, then maybe I'll believe the angel analogy.

“I got nothing’ darling

All I’ve got are broken wings

A little love means everything”

~ Hand Me Downs - Bob Evans

Post script - I saw this poem online, I think it relates to the situation very well.

People come into your life for a reason, a season or a lifetime.
When you figure out which one it is,
you will know what to do for each person.

When someone is in your life for a REASON,
it is usually to meet a need you have expressed.
They have come to assist you through a difficulty;
to provide you with guidance and support;
to aid you physically, emotionally or spiritually.
They may seem like a godsend, and they are.
They are there for the reason you need them to be.

Then, without any wrongdoing on your part or at an inconvenient time,
this person will say or do something to bring the relationship to an end.
Sometimes they die. Sometimes they walk away.
Sometimes they act up and force you to take a stand.
What we must realize is that our need has been met, our desire fulfilled; their work is done.
The prayer you sent up has been answered and now it is time to move on.

Some people come into your life for a SEASON,
because your turn has come to share, grow or learn.
They bring you an experience of peace or make you laugh.
They may teach you something you have never done.
They usually give you an unbelievable amount of joy.
Believe it. It is real. But only for a season.

LIFETIME relationships teach you lifetime lessons;
things you must build upon in order to have a solid emotional foundation.
Your job is to accept the lesson, love the person,
and put what you have learned to use in all other relationships and areas of your life.
It is said that love is blind but friendship is clairvoyant.

Thank you for being a part of my life,
whether you were a reason, a season or a lifetime. 

Strength

 (source)

Strength is often perceived as a symptom of disability. If one can endure the everyday difficulties of having a disability, they must be strong. It's the 'super-crip' labeling. If one can simply go out and get the newspaper with a smile on their face, they must be strong. If one can cope with an affliction that so many others believe they couldn't endure, they must be strong. It is rather condescending when perceived strength is spelled out like that.

A blogger friend, The Chaser, wrote me some beautiful words of support last week. They gave me encouragement and reminded me of my strength. They weren't condescending, and spoke the truth. A true observation made by someone that has never met me:

"People somehow think that since you deal with this illness you are strong enough to handle everything they have as well. They lean on you. Expect that you can take it...after all...look how strong you are with everything else in your life. You overcome, that's what you do...your heart is even more sensitive than your skin...and you love harder than anyone gives you credit for...and when you hurt, you hurt like anyone else. You hurt like everyone else."

Lots of people tell me how strong I am. I just think of it as getting on with life. Going through physically painful times. Enduring the stares and comments because of my appearance. I just get on with it. If let these things stop me, I'd probably be bored at home, receiving welfare payments, watching re-runs of Oprah and wishing I had a life. And so for this great life I have, being strong is the only choice I have.

I don't see my 'strength' until people remind me of it, and sometimes say they admire me for it. And in recent times, I believe my strength is a reason I can take on a lot emotionally. It may well be a reason I gave so much of myself to help someone else. He once told me that the he loves me for how strong I am. And this strength is the reason I am hurting so much, and also an assumption that I am going to be ok.

Todd from Toddocracy wrote a moving blog post about strength and disability last week, too. It resonated with me, and was the inspiration for this particular post. I want to share it with you. Thanks for letting me re-publish it, Todd.

"People often confuse strength and perseverance. Especially when it comes to disability. Apparently people see me as ‘strong’ because I put up with my disability and attempt to build life beyond its restrictions. This requires neither of the above two qualities. I am not strong because I attempt to live an adequate (yet ultimately unfulfilling) life. Nor is it perseverance, because that implies I must have a degree of honourable character in order to look past my own flaws. And I cannot.

Give me anything in the world and if I had the opportunity I would flee from my current circumstances. The fact that I have not implies nothing, except that I have neither the means nor the opportunity to do so. I never will.

So in this context, what constitutes strength?

1. Is it making the ‘best of’ a miserable situation and finding the little things to make a happy life?
2. Is it forming the unrealistic expectation and hoping circumstances change?
3. Is it trying to find a way out hoping that a ‘better situation’ can be found?

Trying to find the answer to the first question could constitute strength, but the other two do not. Sure, achieving the small things in life and being proud of the most minuscule achievements can have a positive short term effect. But when the core problem remains this placebo is short lived. In my case it will never, ever change no matter how many small moments there are.

This also takes away the last two questions: there won’t be any changes and better circumstances will not be found. So all that is left is to remain stoic.

This is the reason why I am highly opinionated. When I am required to sit down and cop my misfortune on the chin for every minute, of every hour, of every day, I refuse to do so in any other aspect of my life.

Perhaps that is what strength means?"

September 11, 10 years on

i awoke to the television
churning out images of
the world in damage control.

the sky was raining planes, and
the monsters had shown their faces:
their boots of evil
trampling upon eternity’s certainty.

and from the dust and rubble,
paper was the only escapee-
forever haunted by ten thousand screams
etched upon its fibres.

this doesn’t happen-
not in the world that I know.
this is reality T.V at its most real.

~

 

I wrote this poem just after September 11 2001. I was 19 when the planes hit the Twin Towers and the Pentagon. I was in hospital when it happened. I remember feeling better that morning, telling the nurse that I was wanting to watch music videos on tv. She said that she doesn't think anything will be on tv as a plane hit the World Trade Centre in New York. I couldn't quite fathom the impact, I didn't know anything about the World Trade Centre's size. So I turned on the tv. And was floored by the enormity of it all. I watched tv all day for the rest of my hospital stay. 

I think the thing that changed for me most since September 11 2001, aside from the west vs east portrayed as good vs evil, is the way the media covers news events. I wasn't used to 24 hour news coverage, and even such instant news coverage, in Australia - not since Lady Diana's death in 2007. It became grief porn. And the media continues to thrive on grief porn. Images of people injured, crying, dead.

I was thinking about the way the media's coverage of September 11 and subsequent large scale tragedies, and wondering the impact on the families of the victims - seeing the images of these tragedies constantly replayed. It must be so difficult. 

 

Where were you when you found out about September 11?

All of it could have been avoided.

I had to ensure that my woe is me post wasn't front and centre for a week. I didn't want visitors - or god forbid - people who know me - to think I am always sad. Because I am not. But I think emotions can falter, and hell, my strength is part of what got me into this mess.

So I've been looking for meaning in everything. Star signs. Calendars. The awful thoughts when I am alone. I feel like songs were just written about me. Or by me in another life.

There's the obvious and current Gotye which sort of applies:

"But you didn't have to cut me off
Make out like it never happened
And that we were nothing"

And then there's this gem, the track after the obvious. Gotye's Eyes Wide Open.

The chorus makes me think about what I've done. Knowing the outcome and danger of the situation and doing it anyway. And I think of the well intentioned advice received, and how I was headstrong. I never convinced myself I was fearless. I was shit scared of the reality. Gotye sums it up well: "And the saddest thing is all of it could have been avoided."

I walked the plank with my eyes wide open.

"So this is the end of the story
Everything we had, everything we did
Is buried in dust
And this dust is all that's left of us
And only a few ever worried

While the signs were clear
They had no idea
You just get used to living in fear
Or give up
When you can't even picture your future

We walk the plank with our eyes wide open

We walk the plank with our eyes wide open we
(walk the plank with our eyes wide open we)
Yeah we walk the plank with our eyes wide open we
(walk the plank with our eyes wide open we)

Some people offered up answers
We made out like we heard
They were only words
They didn't add up
To a change in the way we were living
And the saddest thing
Is all of it could have been avoided

But it was like to stop consuming's to stop being human
And why'd I make a change if you won't?
We're all in the same boat
Staying afloat for the moment

We walk the plank with our eyes wide open
(walk the plank with our eyes wide open we)
And we walk the plank with our eyes wide open we
(walk the plank with our eyes wide open we)

With our eyes wide open we
We walk the plank, we walk the plank

So that is the end of the story"

I'll be ok soon. And probably less cryptic too.

The second fall. The second break

“I am famous for my generosity
They say I am the kindest
But it is easier to
Give than receive love”

~ Darkness, Darren Hayes

“You've moved on
I still feel exactly the same...

I shouldn't be holding on
But I'm still holding on for you”
~ The Lover After Me, Savage Garden

I wrote most of this on Tuesday. I still feel the same. Maybe worse. I wish I didn't feel so much. I wish I didn't love so much. So much sadness. So many tears. Violent crying. I don't do things to receive return gestures. I wish nothing but happiness. But I wish I could make him happy. I am so angry at myself. And then I go get all fucking Tumblr/Darren Hayes lyric, and realise I might be feeling just like every other emo teen half my age. I am never more dramatic than when my heart is in pain. I have been drinking on an empty stomach. Blogging under the influence.

I knew I shouldn't fall again. I told myself I wouldn't. I told my friends. Unconvincing. Even though my love had changed, I still fell. Hard. Like the first time. And I kept thinking, what's the future, what's in it for me? Everything and nothing. I knew the outcome.

And yet I couldn't help it. I loved the ideal created by our words. I love this new him. The distance created an immense closeness. There's a danger in distance. We know each other in the form of pixels and data transfer and 3G. Flesh and touch and expression was fleeting. It was all an ideal. I can't make someone love me.

There should have been a sign and roadblocks. Slow down. Danger. Heartbreak ahead.

There probably was. But I didn't see. I was too worried if he was ok. Rather than worrying if  I was ok. And I'm not. Not ok. I hate being so invested in this.

And when my heart broke the second time, a blow by far gentler words than the first time, I wondered why this pain felt worse.

Today I burnt my hand. It was a steam and hot food burn. I had to go to hospital - the second time today.

I cried so much. My hand hurt from the burn and my heart hurt from the break. Sometimes one pain cancels out the other. Not today.

I haven't lost much in the scheme of things. But I've lost the routine. The hope. The permission to love him. And being needed. The loss I feared so much.

I've never fallen for someone twice before, until now. I don't want to again. I am scared to give so much of myself to someone else. What hurts more: getting your heart broken, or still loving someone, even though you know they don't want you anymore?

R U OK?

"Thursday 15 September, 2011 is R U OK?Day. It’s a national day of action which aims to prevent suicide by encouraging Australians to connect with someone they care about and help stop little problems turning into big ones.

On that day we want everyone across the country, from all backgrounds and walks of life, to ask family, friends and colleagues: "Are you OK?".


Staying connected with others is crucial to our general health and wellbeing. Feeling isolated or hopeless can contribute to depression and other mental illnesses, which can ultimately result in suicide. Regular, meaningful conversations can protect those we know and love.
It's so simple. In the time it takes to have a coffee, you can start a conversation that could change a life."

A blogger friend of mine, Lori, has a mantra: Speak. It might save someone's life.

I saw a post and video on Lori's blog about R U OK?Day and thought of what she's been through. She's my age, with two young children, and lost her husband earlier this year to suicide. Lori has shared her story of her husband's suicide and the impact on her family, often in confronting detail, on her blog. The destruction is incomprehensible. It was Lori's story about suicide that made me realise the importance of reaching out to someone in need.

A couple of months ago, someone I am very close to began to go through a tough time. Maybe began is the wrong word – everything came to a head for him, I guess. He sought treatment for addiction and depression. I think I was one of the few he told. And I didn't realise how bad things had become for him until I asked how he was. The bad things he told me, and the good, have sometimes been really hard to take. It was especially hard hearing he wanted to die.

I kept listening to him, reassuring him I'd listen without judgment. I kept the conversation going, asking him if he is ok. He told me not to worry. Of course I worried. And I often felt helpless. I just wished he could feel worthy.

He is on medication now, and seems to be doing ok. But it will be a long road. He said he wouldn't have gotten through he hard times without the support he received from those close to him.

I still continue to ask how he is, every day. Because it's so important to reach out to someone in need and listen to them. While unlike Lori's situation, he isn't my husband, not even my boyfriend, I cant imagine loving someone else like I love him, and I can't imagine losing him to self destruction or suicide. If I lost him I would regret it if I did not reach out.

'Addiction', 'depression' and 'suicide' can be such dirty words, there is such a stigma - but that the cost of not reaching out when you know someone is in trouble could be catastrophic. You don't have to know what to say, just listen without judgment. People need to know they're worthy and loved, that someone is there to listen to them, and that someone is willing to ask whether they're ok.

PS: if you are providing support to someone in need, I strongly recommend talking to someone - a trusted friend, a counsellor or one of the services listed below - to ensure you are supported too.

National help lines and centres
Lifeline - 24/7 telephone counselling service - 13 11 14 -
Suicide Callback service - 1300 659 467
MensLine National -  24/7 support for men dealing with relationship and family issues
- 1300 78 99 78
Kids Helpline - 24/7 telephone and online counselling for young people 5–25 years
- 1800 55 1800
Reach Out! - Online crisis and mental health information for young people
SuicideLine Victoria -  24/7 telephone counselling for people at risk of suicide, carers and bereaved - 1300 651 251

Helplines and Information
SANE Australia Helpline - Mental health information, weekdays 9am–5pm
- 1800 187 263
headspace -  Mental health services and support for young people 12–25 years
beyondblue Info Line - Information about depression, anxiety and related disorders
- 1300 224 636
Black Dog Institute -  Information about depression and bipolar disorder 

Legs. In pain.

I spent some more time in hospital this week. Not on the ward, just in emergency and the dermatology clinic yesterday and today.

The pain in my skin, particularly on my legs, was too sore to bear earlier in the week. The pain pounded from the inside out, it hurt to take each step. It hurt to sleep under the blankets. Taking off my stockings left long, bloody cuts on my legs.

 It hurts and I wish it would stop.

Thanks to my wonderful Mum and her friend for driving from Albury to take me to hospital yesterday. And thanks for making me laugh. And buying an impressive meal from the cafeteria :) Love you both ♥ 

Now I have to rest with my legs bandaged and elevated. In front of the TV (hello Rush!). 

Here are my legs that I bandaged last night. The attractiveness is jealousy inducing, I know.

I hate the unpredictability of it all. Why can’t my skin condition come with a fun sort of spontaneity? Like last minute road trips or a picnic or free tickets to the concert you thought had sold out?

This evolving love

“You have been loved by someone good”

~ Sia

This week marks one year since I began to love him. I remember my realisation – it was after a text from him, telling me he is glad he started talking to me, it feels so easy, and reconfirmed after an after midnight text following a three hour conversation telling me I am the perfect girl for him. I fell quick, I fell hard. I wonder whether I am destined to keep falling in love this way – through words alone?

A couple of months ago I wrote about wondering whether a year will go by with a day where I wouldn't think of him. The answer is no. There hasn't been one day in these 12 months that I haven't felt something for him. Sadness, frustration, and hope. But mostly love.

Just after I wrote that piece, we became in contact more than we've ever been. It has been one of the good things to come out of a very bad situation. Long emails and texts almost each day, and one call. The contact is, to an extent, more positive. I'm comfortable talking about things with him that I'd never with somebody else.

I feel a different kind of love for him now. It is more realistic due to the difference and distance between us. I feel it's evolved from idealism and me wanting to be in a relationship, to lustful, to heartbroken... and now it's this type of caring, understanding, non judgmental, fully trusting love on my part. It's the kind of love I hope to feel growing old with someone. Only I won't with him. It's a nostalgic love. I feel more sad than happy about it, especially when he told me he wishes he could have our time again.

I don't expect love from him in return. Though in the past I've hoped for it, I've never expected it. Just loving him is enough for me. Is that unhealthy? To settle for unrequited love?

This thing. It's based on words and memories alone. And need. Mutual need. Unconventional love. I sort of want to set him free from my heart. He deserves this love from somebody closer to him, and so do I. And then I get sad at the thought of him no longer needing me. 

A month ago I went to see a counsellor. The counsellor asked whether I loved him.

I said yes.

The counsellor asked whether I told him that I loved him.

Only once in person. A few times recently in text, to remind him of his worth to me. But I don't want to push it. I don't want to ruin things. Maybe he knows my love for him through my loyalty.

I have every right to tell him I love him, the counsellor told me, for I have earned my stripes.

I've earned my stripes. I love him.

Make your own path. Be your own hero.

Two amazing opportunities came to me today, pretty much because of this condition that has made me extremely sore lately. Hurrah for having a chronic illness and positive discrimination! 

Without rain, you can't have a rainbow! :)

Retarded

Several awkward moments at dinner: 

I ask a kid who has been staring at me for 10 minutes straight to please stop staring. 

Kid's guardian tells me 'she can't, she's *retarded* too". 

Kid's guardian proceeds to ask me about my ichthyosis. 

Awkward all round. 

Especially at the use of the word retarded. It's wrong.

A friend said, "You know things are wrong in the world when people are calling their own kids retarded...."

Feature in Pick Me Up magazine

Last month I featured in the English magazine Pick Me Up. Here is the scan.

Blogs of note

It's been a lazy weekend. I am resting before I return to work tomorrow. Any more rest and I'd be asleep. Hold on, I have been asleep for a good portion of this past week.

Here are some blogs of note that have been written while I've been sleeping. This is a bit of a community service edition of blogs of note. There are some really important messages in the blogs I've noted. I really encourage you to visit them.

Think Tasmania

My Dad has become a blogger! Sort of. He is now a contributor to Think Tasmania - a website dedicated to Tasmanian life and tourism.

 

My parents are regular visitors to Tasmania and will retire there. Dad has plenty of stories of their travel and food to write about - he is a very gifted writer. It has been great to read about my parents' holiday adventures.

Read my Dad's articles to date here and here.

Speak - from Under the Yardarm

Something has been going on in my life recently that I can't find words to write about. It's not my story to tell. It's heartbreaking, worrying, and has taught me what despair and unconditional love means. I know how important it is to speak and listen to someone in need.

Naomi from Under the Yardarm has written a piece so beautiful that I had to share.

 

Here is an excerpt from Speak:

"I told him that so many men kill themselves because they think it’s not alright to admit they are not OK. That it can be so hard to admit you are depressed. But that all you have to do is reach out to someone. Family, friend, teacher, doctor. Speak."

If there is a piece I'd wish I'd written, it's this one. Thank you Naomi for writing what I've not been able to. I really urge you to read Speak and share it with those important to you.

James's World

This young man, James, is amazing! He was one of the young people I mentored at the Royal Children's Hospital (RCH) in Melbourne. James is an enthusiastic activist and he is fast becoming a very influential person in the chronic illness community. He has incredible perspective about his own illness too. I am incredibly proud of him.

James has a dream to bring social networking to the RCH, and his blog details his journey to achieve this, plus information about his illness.

You may recall this funny story I wrote earlier this year.

There was a presentation of awards and they farewelled me during it. One young person made a little speech about the time I was concerned about his broken foot on camp in January 2009.

He was walking down the corridor, looking worn out and red. I asked him if he was ok and added 'you're a bit red'.

'Hypocrite!', he exclaimed!

Funniest. Moment. Ever. We laughed and laughed at that moment, and continue to today.

I paid him back this camp: he and I went to the kitchen to get milk for supper. As he reached in the fridge to get the milk, I put on his Woody from Toy Story mask, and when he turned around, he jumped so much! Very funny!

That was James. :) James represents why I love helping people through my participation in the disability and chronic illness community. Not only can I impart my experiences, but I learn so much too.

 Whatever you wear tomorrow, make it RED for Daniel

Last night the terrible news came that a man has been charged with the murder of 13 year old Daniel Morcombe, who went missing on the Sunshine Coast in QLD in 2003. Nikki from Styling You is encouraging us to wear red for Daniel tomorrow.

 Nikki writes:

"[Daniel] was wearing a red t-shirt the day he was last seen waiting for a bus under the over-pass of a very busy road.  Heading to our region’s major shopping centre to buy Christmas presents. The red t-shirt has become the Daniel Morcombe Foundation’s symbol."

You can donate to the Daniel Morcombe Foundation which promotes child safety and teaches children about 'stranger danger'.

New Zealand Yahoo

Turns out I've been let loose in New Zealand today!! I have received several lovely emails from NZ readers telling me they've read my New Idea story on the Yahoo site. What a nice surprise :)

 

Thanks to everyone who took the time to read the story and visit my blog and write to me. Always appreciated. :)

Read the full story here.

Hello and thank you and exciting news

I am out of hospital now, resting at home until next Monday. I am feeling much better, after feeling so sore and tired for more than two weeks.

Thank you so much for the lovely wishes you left in the comments section, on Twitter and Facebook. Plus texts and visitors kept coming. I feel very loved. Thank you. Your support is so appreciated. Also thanks to Sydney Shop Girl for keeping you updated.

The rest I expected to get in hospital didn't really happen - time is marked by observations or medication or procedures. Blood pressure (mine is low). Tablets. Dressings (I negotiated mine down from four times a day to twice). And then there's teaching the nurses about ichthyosis and the treatment. I just wanted to sleep. So now I am at home I am just lazing about. It is nice to have been detached from the world for a short time - from the stuff happening in my own life to the serious tragedies worldwide.

Here are some hospital pictures.

Actually this is the sunset behind my house last Friday night.

 And my hand, wet bandaged.

 My friend brought cupcakes to share.

 This one is my favourite. Croquembouche.

 My what slim legs I've got. I did the bandages myself. A work of art!

 Really good magazines. Especially Paper.

This meal contained a banana. Bananas are like gold here. $15 per kilo. Free banana = lottery win!

I felt a bit of a fraud in hospital. I often do. Of course I had legitimate reason to be there, but I saw so many sicker people than me: people that needed the nurses more than me, people that weren't able to smile about their predicament. My care was fairly self managed - but it helped to have meals prepared and wet dressings and enforced semi-rest.

I got some new perspective in there. Not like the perspective by Katy Perry: 'I put on my catsuit and I got a crystal stuck under the bed of my finger. It's not fun' (as I read in Rolling Stone magazine in bed). Oh dear. I got the perspective of relative sickness, and the desire to make plans. I thought... overall I am pretty well, considering. And I am not usually spontaneous. And while I am well and young and only tied down by rent, I thought it's time to save for more than just clothes. And I was inspired by Eden and Mrs Woog flying the Aussie flag. 

So I booked a ticket to BlogHer'12 in New York in August 2012!!!!! 

I heard Empire State of Mind on the radio this morning, sprung out of bed and shouted, to no one but myself, 'I AM GOING TO NEW YORK!'. And then my eyes watered a little - I cried happiness at the thought! I banked my cheque from New Idea today, knowing it would help fund my trip. I called my managers to give them a health update and told them I'd be going to America this time next year.

And I thought about Carrie in Sex and the City and how, for a week, I may be just like her. Then I decided I'd rather be like my other NY heroine - Felicity Porter - wide eyed and frizzy haired, always loving the bad boys.

(source)

A Message From Carly

Hello everyone,

I'm Sydney Shop Girl and Carly has asked me to do a little post to let you know how she's doing.

Carly was admitted to hospital yesterday for some treatment for her ichthyosis.  She's okay but had to be admitted for antibiotics and pain management.

Carly, we hope you don't have to stay in too long and that you get better quickly.

I couldn't find a good photo of a bunch of flowers so I've found one from the flower show at David Jones last year.  Flowers and shopping, what more do you need to get well soon?

Thanks for reading and I am sure Carly will be back as soon as she can.

In the meantime, please leave your well wishes on this post, twitter or facebook. 

SSG xxx

Music I've been missing - Gotye, and other sad love songs by Aussie musicians

 "You can get addicted to a certain kind of sadness"
~ Somebody that I used to know, Gotye feat Kimbra

When I did my Hack interview a couple of weeks ago, I told journalist Alex Mann that I prepared myself for talking about love by listening to the saddest love songs I had on my iPod that morning. Songs by Angus and Julia Stone mostly. Alex said it's funny how when we think of love we don't immediately go for the happiest love songs.

Despite how sad the lyrics are, they can lift me up. Listening to sad love songs is a form of empathy. It's reassuring to know that someone as popular, talented and good looking as my musical idols have experienced some of the heartbreak and longing I have. And there's also the fleeting moment of me thinking 'he's single, I'm single, we've both been hurt by love, we can be soulmates...' Um. No.

We discussed how it's like the lyrics of sad songs were written to fit our exact situations. Like this one:

"Here I go.
I'd tell you,
but you already know.

If you love me, with all of your heart.
If you love me, I would make you a star in my universe.
you'll never have to go to work.
you'll spend everyday, shining your light my way." ~ For You, Angus and Julia Stone

Or this one:

"How many days am I gonna regret you?
How many nights till I forget you?
Have I been wasting all those years
Held down by these tears
How many dreams have I left deserted?
How many hopes have been diverted?
Have I been buried in the dirt
Held down by this hurt
And how many lows did I let you highjack
How many ways can I study the playback
How did I end up lying here
Crying underneath a Dublin sky?" ~ Dublin Sky, Darren Hayes

Alex and I also talked about what my ideal romance would be like. Dates at concerts and laughing and cuddles and happiness I guess. I told him that I often idealise the thought of love, rather than the relationship itself. That I tend to create this illusion of what he might really be like in my mind, and in reality, he's not. And I said I am a bit like the Seeker Lover Keeper song:

"I love you more when I’m missing you...
I think I was born to be in a state of longing
Born to be wanting wanting
I put in a letter for you
I love the danger in distance..." ~ Even though I'm a Woman, Seeker Lover Keeper

I quite like missing someone. And I thought I was the only one. But I stand in good company with singer-songwriters Blasko, Seltmann and Throsby with being content with yearning.

This week I discovered the beautiful song, Somebody that I Used to Know by Gotye feat Kimbra. Gotye is the music I've been missing. I don't know how it escaped my radar, but hearing Somebody that I Used to Know reminded me of Gotye's 2006 gem Heart's A Mess. Its dramatic moans, eery bleeps and bleeding lyrics mirrored my heart back then. I'd play it on repeat, pining for my (yet again) unrequited love, never making a move. I'd drive home from his house in the dark hours, analysing every move that nearly happened, singing my lungs out.  I am never as dramatic as when I am yearning for a boy.


Somebody that I Used to Know has similar sentiments. It'd be good to play after a breakup. Perhaps this is the quiet man's You Oughta Know? A few lyrics resonate with me, not that I am in that broken up place now, but my heart does ache, and I am both yearning to be loved and for everything to be ok (heavily weighted to the latter).

"Now and then I think of when we were together
Like when you said you felt so happy you could die
Told myself that you were right for me
But felt so lonely in your company
But that was love and it's an ache I still remember

You can get addicted to a certain kind of sadness
Like resignation to the end
Always the end
So when we found that we could not make sense
Well you said that we would still be friends
But I'll admit that I was glad that it was over

But you didn't have to cut me off
Make out like it never happened
And that we were nothing
And I don't even need your love
But you treat me like a stranger
And that feels so rough
No you didn't have to stoop so low
Have your friends collect your records
And then change your number
I guess that I don't need that though
Now you're just somebody that I used to know
Now you're just somebody that I used to know
Now you're just somebody that I used to know

Now and then I think of all the times you screwed me over
But had me believing it was always something that I'd done
But I don't wanna live that way
Reading into every word you say
You said that you could let it go
And I wouldn't catch you hung up on somebody that you used to know

But you didn't have to cut me off
Make out like it never happened
And that we were nothing
And I don't even need your love
But you treat me like a stranger
And that feels so rough
No you didn't have to stoop so low
Have your friends collect your records
And then change your number
I guess that I don't need that though
Now you're just somebody that I used to know

(Somebody)
I used to know
(Somebody)
Somebody that I used to know
(Somebody)
I used to know
(Somebody)
Now you're just somebody that I used to know
I used to know
That I used to know
I used to know
Somebody"