being brave.

Now Playing: Cameo Lover by Kimbra (this is non stop baby, you've got me going crazy, you're heavier than I knew) 

I was a pretty clingy kid, to be honest, despite being in daycare. My mum's colleagues used to call me 'leach' or 'parasite' because I always insisted on being held, cuddled, and clinging on to mum. Even now, I'm closer to my mother than most girls my age are - my mum is my best friend. 

I've never understood parents who's goal in life is to train physical and emotional attachment out of their children. I knew I could always run to my mother for a hug, to kiss something better, for a talk. I was never made to feel weak or babyish for it until I got to school and people judged me for it. I can't count how many times I've fallen asleep in my mother's arms, or gotten up at all hours of the night and crawled into her bed. That's what parents are for. 

But one thing that my mother did instill into me was guts. I get my guts from my mother - literally. The one thing I remember the most is 'don't cry'. 'Don't cry, G. Be brave'. I don't know any girl who isn't allowed to cry. 

I cry really, really easily. Let me tell you why. 

Sometimes people ask me how I handle my medical condition. What they don't realize is...what else can I do? I was born with my medical condition and I'll die with it. I don't know what it's like to look at myself in the mirror and not see scars, not see my pacemaker. I don't know what life is like without little nips of pain almost every day, I don't know what life is like without hospital scares. That's just life. This is just my life. I don't know what life is like without it. Being brave is just one of the things I've had to learn, like tying shoelaces and catching trains.

I guess this has affected my life in the fact that I've always been attracted to intensity - the kind of do or die, heat of the moment, complete rush of spontaneity. That's what I mean by living without regrets - it's not like I've never done something that I wish I could have done differently, or that I've never done something and then kind of wished I'd never done it...but I live without regrets by accepting everything. The good is wonderful and the bad...well, what doesn't kill you makes you stronger. I'm a stronger person, a better person, because of the experiences that I have. That, and the fact that I am suffering from teenage recklessness and sometimes I simply can't resist. 

Physically, I have to deal with the pain. The little nips are muscular pains...they're hard to describe, I haven't gotten them from anything else apart from my pacemaker. I'm also really, really unfit, and get tired easier than other people - which is why I have burst into tears on more than one occasion when people have yelled at me for taking my time on staircases because a) it is pretty physically exerting for me and b) I fell down three flights of stairs when I was five. Hospital - hospital is just pain, and then when you get home the immobility is beyond frustrating - taking a lifetime to hobble down the stairs, of not being able to sit up, sit down, somehow finding lying in bed doing nothing quite uncomfortable. And then there's the appearance...it's hard not to notice my scars. It starts a few inches below my collarbone, right between my breasts, and stops a few inches above my navel. Sometimes I look in the mirror but I just can't imagine the scars away - I really have no idea what I look like without them. My pacemaker is about the size of my fist (although, admittedly...I have a tiny fist) and protrudes just where my waist dips in. Self conscious? Definitely. 

Emotionally you go to some pretty dark places, too. There are no words to describe the feeling of hugging your own father and knowing you might never see him again. There is no way to describe the sheer panic when they have the gas mask on your face and you can't breathe and it's heavy and sickly sweet and you know you're just about to pass out and the only thing in your head is 'don't want to'. It's hard not to feel a little violated when you wake up in intensive care in unimaginable pain with your shirt completely unbuttoned and a slit down your chest, and then a syringe of Panadol is forced between your lips like you're a sulky infant. On more than one occasion I have totally broken down and asked 'why? Why me?', and begged to just be normal, just to be like everyone else, to not have to go through this crap. 

I know you just have to get over it. I don't ask why anymore - there's no point. It's the main reason why I'm atheist - I cannot begin to describe the unimaginable rage that sears through you at just the thought that someone or something might be responsible for all of this, or that you are somehow guilty or deserving of the pain. Sometimes I can go days without thinking about it, without realizing I'm different, and then it'll hurt again or someone will bring it up and then I realize that yeah, I am a freak of nature.  

People don't see a lot of it. They see me as being relatively normal - in uniform, walking around, hair up, makeup on. They haven't seen me on a hospital bed, losing weight with cracked bleeding lips. They haven't seen me in a wheelchair. They haven't seen me rushed to emergency in all hours, they haven't seen doctors turning pale at the sight of my thick hospital file. They haven't seen the surgeon calmly scribble a picture of a heart and explain to me how they're going to dissect it up like a ninth grade biology class. They haven't seen me slowly inching down the stairs with tears rolling down my face. They haven't seen me with an opium headache. They see everything airbrushed, everything tucked away, the calm after the storm, everything cleaned up and hidden under clothes. I don't get to see that, but I feel...everything.

People feel the most sympathy/empathy when somebody was 'normal', and then becomes disfigured or disabled in an accident. Why is it that those few years of normality inspire more sympathy than a lifetime of having to deal with it? I'm not saying we shouldn't have any sympathy for people who become paralyzed after freak accidents, but it isn't any easier, being born with something. Sometimes I think it's harder. 

I really hate it when people try and brush it aside, try and compare me to paraplegics or cancer-sufferers and try to tell me that what I go through is nothing. No. What I go through is not the worst, nowhere close. I know people live with a lot worse and I have nothing but the greatest respect for them, for their strength. I am incredibly lucky to be alive, to be reasonably functional, to be relatively normal. But don't belittle what I've gone through. I've been through extraordinary pain, and I've been to some very dark places because of my medical condition. Not many other people have to question whether they should exist, whether their existence is somehow illogical or immoral. It's more than what most people have to deal with, and it's more than what most people can deal with. It is not something I would wish on anyone, and I don't need pity, but I would like some understanding and I certainly don't need people telling me that it's nothing. This is my whole life - it effects everything in my whole life. I'll tell you right here, right now, that if you weren't born with what I was born with, you couldn't handle it. Even if you could handle the physical pain, being born different, being born disadvantaged, deformed...if you let it get to you it can totally, totally screw with your mind. You don't know what it's like to wish, before and beyond everything and anything else, just to not have to do this, to just be like everyone else, and know that that wish will never be granted. 

And so that's how I've learned to be brave. I've got guts from my mum. Like all good daughters, I don't listen to my mother - I cry. I cry in pain and I cry in terror in hospital, but I never cry because I've given up, I never cry because it's gotten too hard. I let myself cry over relationships, over other stuff - but not this. When it counts, I've got guts - I get my guts from my mum. You learn eventually - not just me, but everyone - that no matter how hard something is, no matter how much something hurts, there will always be something even worse but you'll get through that and this, too. No matter how low things get, no matter how much pain you're in, no matter how scarred or scared you are by something, you have to be brave. Life can get hard, but it doesn't get any easier after you break down. Don't cry, G. Be brave.