unkown 1 You wake up. You place any joints back in their appropriate sockets and hope that you can be lucky first time around. You reach for the clock and see that you have slept for twelve hours. You do not believe that you have slept at all. You claw for the side of the bed to prop yourself up, and retch at the pain which fits through your flesh. Slowly you will walk to the bathroom and cup your chest and spit canary mucous into the basin. There is coffee and breakfast and medications swallowed in equal thirds, and you hope that you can make it through the day without needing to vomit.

unknown 2 You will sit on your shower chair, and you may have to ask for someone to turn on the taps. You will understand that showers are better than sex; showers mean no pain. After 7 minutes your Dad starts banging on the bathroom door about water restrictions and jesus bloody christ don’t you know we’re in a drought? If it is a good day, you will be going to Uni. If it is an okay day, you will be going to specialists or treatment. If it is a bad day, this line is a lie, because you never made it to the shower in the first place.

unknown 3

You will wrestle with the ignition in your car, and you will call for your Dad to turn the key for you. You will drive forty minutes to Uni, and you will take three rests walking from the accessible car park to your class. You will be late, and you will be gasping for breath as your blood regurgitates backwards into the valves of your heart. You will laugh and you will speak and people will comment that you are always so excited. You will not tell them that this is the first time you have ‘socialised’ in days. Your lecturers will always ask you stay back after class. How are you doing? You want to tell them ‘same shit, different date’. You smile and say good thanks and you take another three rests walking back to your car.

unknown 4

You make it home and it takes you two minutes to get out of the car. Sometimes your family will ask how your day was. Sometimes they will not. After all, you were only gone for three hours. Time is relative in disease. You will stumble to the shower, and your Mum will help to peel your bras and shirts off. Your arms are too tired by now. You like to think that one day a husband will do this and he will smile and say ‘nice tits’. You like to think it will be twice daily joke. You will curl up on the shower floor, the chair dejected in the bathtub. You curl up in the foetal position and for 8 minutes you think of nothing but the droplets tracing down your red-hot flesh. Your Dad will bang on the door and he will ask if you know about the drought? You will sit on the bathroom floor naked a while until you can get dressed. 

You didn’t cook dinner and the familiar guilt pangs in your belly. You thank your Mum, and she says ‘that’s okay’. Sometimes you are well enough at this time to help with the dishes. Sometimes you are not. Your eyes continue to dart to the clock. You wait for the moment drug powders can coat your tongue and you can get some relief. The TV is too loud, the lights are too bright. ‘Stop talking so fucking loudly!’ you snap. Your family is no longer bewildered by this. ‘You’re in pain. You need to go to bed’.

unknown 5

You take one Golden Retriever and three icepack and one heat pack and one water bottle and two emergency tablets to bed. You listen to one meditation, two meditation, three meditation, four. By morning, you surmise, your Golden Retriever will be the buddha. Perhaps you will fall asleep choking back retches from the pain. Perhaps you will fall asleep well.

You start all over again tomorrow.


‘Your twenties are a time of exploration, not certainty. Get out and try. Don’t sit at home thinking you should already know’.

unknown 6

I am in my twenties. I don’t know how to change the oil in my car, despite my proclamations that I’m the super-feminist. I don’t know if you still ovulate if you don’t get a period, and Google doesn’t seem to be helping me out with this one. I don’t know if I am in the right course, I don’t know who my soul mate is, and I don’t know what I want to do with the rest of my life.

But I do know that this is a life that I never wanted.

There are a lot of very courageous people in this world, many of whom I am blessed enough to love, to gossip with under the stars, to laugh hysterically with, to live with, to make love to, and to take selfies with. There are many people in this world who are infinitely more courageous than I will ever be. 

We’ve all read those feel good stories, read black and white quotations, listened with wide-eyed admiration. We’ve all heard it.

“As hard as it is…I wouldn’t change a thing”

Tumors and tsunamis and tragedy spills from their smiles, and they rest comfortably in their own carnage. 

These are people who I will forever admire, and just as they wouldn’t change a thing, I wouldn’t change them. 

But I am not one of them. 

I have lived with my genetic disorder from the moment that either my Mum or Dad’s side of the coin decided to turn on its head at my conception, and left me wobbling between one life and another. But I have only truly lived with this disorder since I was thirteen, when my tissue truly began to fall apart and left me in a bloodied and broken heap. Before and after, then and now, past and present. However you wish to look at it, just like my DNA, my life is firmly split in two.

That is easy to read. Uncomfortable, perhaps. But it is easy. To live it is another beast entirely. In a few minutes you will have finished this piece, and you get to go home to your own life. I do not get to go home from mine. That is not a statement to elicit sympathy, pity or words spoken with a hot tongue. It is merely my reality in all it’s naked truth.

unknown 7

I want to be a doctor. An intensivist, or an emergency doctor. But I cannot. I managed just two weeks of nursing placement before my placement coordinator sat me down with tears in her eyes. “My darling’’ she began. “This is going to kill you”. I had studied sun and stars for two years to hear these words. Right now, the people I began nursing with will be finishing their degree. Next year, they will have grad positions and they will be living my dream. 

Do not get me wrong; I love psychology, despite what I convinced myself first semester this year. At three in the morning when I am thick with mucous and pain I read coronial reports, research police psychology careers, remind myself of all that I will be. But it would never have been my first choice.

I live at home with my parents and two younger brothers, and I take an immense pride in the unit that my parents built for me (Minus a shower. Don’t you know we’re in a drought?). It smells of vanilla soy candles and golden retriever. But I would be lying if I were to say that living at home at almost 23 would have been my first choice.

I most likely cannot have babies. My fertility specialists believe that the threat to my life would be too great. There is fostering, adoption, nieces and nephews, and Golden Retrievers. And in whatever way they come into my life, I will love them infinitely. But it would not have been my first choice.

I am currently not able to work. I volunteer, I started my own charitable organisation. It fills me with the most profound sense of love and gratitude, and every single day I thank the heavens for all that it brings me. But it would not have been my first choice. 

As I get older, I am quickly learning that learning to fall madly in love with my second, third, fourth and fifty-second choices make other people very, very uncomfortable.

In Psychology I have been learning about the Attribution Theory. In it’s most organic and simplistic form, it boils down to this;

When other people go through hard things, we attribute it to something internal, some inherent flaw within themselves. They are the victim of their own making.

When we ourselves go through hard things, we attribute it external forces. You are the victim of the universe.

I am not a victim, nor will I ever be. But regardless of what way you look at it, my very existence makes the rest of society very uncomfortable. Relatives, friends, colleagues, peers, teachers, strangers all have an opinion on the bullets they believe I have unloaded unto myself.

I do not try hard enough. I don’t want to get better. I just need to toughen up. Everyone else is capable of working/studying/procreation/being healthy, why aren’t I? I just haven’t tried enough things, if only I drank more water/went for a run everyday/became a Nun/ate the shavings of a crayon with a dash of lemonade.

It hurts of course, but never as much as when people don’t ask at all.

How was your day? What are your plans for the coming year? How’s Uni going? What are your hopes and dreams? What are your fears? Are you happy?

Photo on 16-11-2014 at 2.39 pm #3

Truth be known, it doesn’t matter anymore. Because while the rest of society is shifting uncomfortably in their seats, I am studying a 6 year degree, falling in love with handsome strangers, and flirting in hospital corridors. I am writing with my golden retriever puppy snoring softly on my feet, and I am singing in my car as I drive to University. I am putting things in place to have an incredible, if difficult, career, and I am planning my next holiday. I am volunteering and making a difference to the lives of others, and I am loving and losing, laughing and living.

Your twenties may be a time for exploring. Mine is a time for living, as best as I possibly can, even if I would never have chosen for things to be this way.

Your twenties are for thinking that you know.

Mine is for knowing that you don’t.

Most of all, they are for knowing that my life, which makes you so uncomfortable, probably makes me happier than your comfortable life will ever make you.


One thought on “Knowing

  1. when I read this you’re telling it how it is with honesty. each time I bemoaned ending up in hospital and then after watching stories on a current affair the comment was made “be thankful for what you have as there are people out there who are much worse off than you are” that’s just how I see it sorry if this causes offence to you jess.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s