I’ve been too unwell to blog for some time. A lot has changed since then. This blog has been inspired by the song ‘Love love love’ by Of Monsters and Men. I urge you to listen as you read. I … Continue reading
I rarely blog about public incidents. But what transpired yesterday and in the early hours of today in Sydney is not a public event. It is an intensely personal reality. We each have the right to go to work, to buy a coffee, to stand in line, to have our minds elsewhere in a coffee shop. We all have the right to do so safely, and to return home once more.
These are merely my reflections. This is not well written, but is from a place of sadness and pain. I ask that in the following hours, days, weeks and months, you respond to yesterday’s events with compassion, loving kindness, intelligence and empathy.
Hate does not cure hate.
I am sorry.
I am sorry that you went to buy coffee, thoughts in another time, another place. I am sorry for what came next.
I am sorry that you tied your apron around your waist, hands rested on the counter. I am sorry that these hands were then forced, splayed across the window pane, leaving grubby, exposed prints for the world to see.
I am sorry that while you fought for your life, that we filmed your every move. I am sorry that while a gun was pointed towards your flesh, so too were the world’s camera’s, greedy and clambering with sticky fingers, hungry for the breaking scoop, the clearest image of your pained cheeks, filling themselves with your pain.
I am sorry that we watched. I am sorry that we each sat transfixed to our screens, television, iPhone and laptops alike. I am sorry that the more the media gave to us, the more we demanded more, slapping forks upon plates. Feed us, give us more.
I am sorry that we all had an opinion. I am sorry that while you quivered, stood resolute, wet yourself or bargained, we all busily threw our thoughts into the ether. It’s Terrorism. It’s the act of an individual. We need to just storm in there and get him. Why don’t the hostages just overpower him? It’s not that hard.
I am sorry for the hours that never ended. I am sorry that we sat in our homes and remarked ‘Jesus, it’s been hours’. I am sorry that while we ate dinner, walked the dog, made love, read a book, vacuumed, you were still there. I am sorry that you did not have your dinner, and your dog, and your books, and your vacuum cleaner, and your lover. I am sorry that you had to wait.
I am sorry that this is what your job asks of you. I am sorry that you stood in blue, black and overalls. I am sorry that you train for these situations continually, but that now you had to live it. I am sorry that you stood, guns and radios and stethoscopes waiting.
I am sorry that you knew the longer you had to stand there and wait, the longer people had to suffer. I am sorry that there was nothing you could do, for so, so many hours.
I am sorry that this was yours. I am sorry that it was your husband, your wife, your girlfriend, your boyfriend, your Mum, your Dad, your grandparent, your son, your daughter, your grandchild, your niece, your nephew, your aunty, your uncle, your lover, your ex, your friend, your colleague, your neighbour. I am sorry that it was your person inside. And I am sorry that you had to be outside.
I am sorry that your community, your belief system, your religion was vilified. I am sorry for the ignorance, for the claims that you were to blame as you went about your lives. I am sorry that there had to be a hashtag in order to keep you safe from the actions of a man you had never met. I am sorry for the threats, for the fear, for the fact you felt the need to remove your Hijab, Niqam, Burka or Dupatta.
I am sorry that you did this. I am sorry that your heart could not see loving kindness, sense or compassion. I am sorry that you chose cruelty over compassion, suffering over sense, killing over kindness. I am sorry that you chose to end and destroy lives, and that now, that cannot be undone.
I am sorry that you had to survive. I am sorry that for the remainder of your life, you will know that your heart beats and contracts, and that the hearts of two others do not. I am sorry that you will jump at loud noises, fall to the ground at shouts, vomit during the evening’s news. I am sorry that you ever had to survive this in the first place. But I am so very glad that you lived.
I am sorry that you had to die. I am sorry that you went to buy a coffee, or to make one. And I am sorry that you will never come home. I am sorry that your flesh is now the responsibility of the pathologist and coroner, and I am sorry that your family must identify you, love you, farewell you and bury you. I am sorry that you will miss out on the rest of your life.
Most of all I am sorry that this is what we have come to. I am sorry that we are the best and worst of humanity, and that we are forever getting the balance wrong.
Twenty one years, eleven months and two weeks ago my Mum bought me into this world.
Eight years and three months ago, I became seriously unwell with an incurable genetic Connective Tissue Disorder.
Eleven months ago my Mum became critically ill with the only known case of Oestrogen induced anaphylaxis in the world.
Two months ago my Mum was fighting for life on a ventilator.
Today we went shopping.
Tomorrow is Mother’s day.
This blog is for my hero.
This is for my Mum.
“For a star to be born, there is one thing that must happen: a gaseous nebula must collapse.
This is not your destruction.
This is your birth.”
You would have taken the fall for me. This I know to be as true as the sick in my belly and the swell in my heart. A few nights ago you asked me how many chromosomes a child receives from each parent. In your eyes I will always be a nurse, the most profound of gifts you could ever lay in my lap.
It wasn’t your fault Mum.
Your reply was as silent as my own assurance.
But it could have been.
And you went back to drinking wine, and I went back to pretending to drink wine, and we planned my future trysts with the spark that only Irish barmen could convey, and lulled ourselves into the parallel universe in which we had found ourselves at home.
The first day could have been yesterday. Or perhaps it could have been eight years ago. Regardless, what was done was done. I remember crying to you, still a child in every sense of the word. I didn’t know that morning I would be thrust into the land of the adult, and you would be knocked entirely off your own axis.
Mum. I can’t walk.
What do you mean you can’t walk?
And so it was.
I would have taken the fall for you. This you know to be as true as the ventilator gurgling in the recesses of your throat and the ache in your soul. As you headed out the door, proud in the way that only a new coat can bring, I called out. My eyes never left the screen, and my fingers continued to fritter away the hours.
‘How many EpiPens do you have Mum?’
‘It’s okay Jess’
And I returned to invest energy I could never afford in to pretending to write assignments, you told me you loved me, and you returned to pretending to gather wood with Dad using strength that has long been laid to rest.
The first day could have been yesterday. Or perhaps it could have been twelve months ago. History has a funny way of repeating itself. Regardless, what was done was done. I was still a child in every sense of the word. You were the parent, I was the child. And as you reached for the dishwasher I found myself gurgling in the unfamiliar tangle of role reversal.
Jess, I cant breathe.
What do you mean you can’t breathe?
And so it was.
I was angry with you, and you were even angrier with me. Most of all, we were angry with ourselves. You weren’t supposed to get sick, but then again nor was I. This happened to other people, other families in other lands and other stories. It was their pain to hold, their ache to feel, their tears to drain in the recess of the shower. We were good people. Lightning didn’t strike good people. It never struck twice.
Only, it did. And we could weep, we could grab onto our own flesh and scream. It wouldn’t make a difference. But we did it all the same.
I don’t have any friend’s left.
No one even visits.
I’m just so fucking tired.
I just want a break, just for one fucking day.
I don’t think I can have babies.
My ovaries are going to kill me.
I was never a dancer, and you fondly remind me of it when I try to pretend that failure of flesh was the catalyst for change. You were different. You wore a Miss Australia competitor sash after all, one doesn’t play hanger without having some sense of tightrope. But in this new land we each had to match the steps of a new dance. It was unpredictable, chaotic and desperately lonely. I stepped on your toes more than once, though I was loathe to admit it. You didn’t fare much better.
I’m in pain.
Yeah, well so am I.
But when it came down to it, under the lonely cover of darkness, we moved seamlessly. There were the days you found me sobbing into my shirt on the dog bed. You never raised an eyebrow, and instead took me in your arms. There were the days that I found you sobbing into the Tupperware cupboard, and I never said a word. Instead I reached for the kettle and danced around the missing lids, and together we sat in silence.
It wasn’t all hurt. There were the tram trials and the way we held our heads high as we dangled bags over our arms through David Jones, and stopped to admire boots that were worth more than my car, and we feigned interest all the same. The movies downloaded and the wine and the tea and the forbidden Cadbury inhaled inbetween.
I held your hand in the Intensive Care Unit and watched with terror as they prepared the Endotracheal tube, the ambubag, the ventilator. Each time as another Intensivist surrounded your bed side you squeezed my hand a little harder. You winked.
You were dying, and you were setting me up.
As they told me to say goodbye I started sobbing hysterically and with your last pocket of air you gasped to Dad. ‘Look after her. Look after her’. I will never forgive them for dragging me away, sobbing and I will forever be grateful that they did, so that this blog can have the ending that it does.
Lightning isn’t supposed to strike twice. But it does, and it did. And just as sure as I will continue to fight this until the day that I leave this earth, so too will you.
We can’t die yet. We’re too wicked to be allowed in yet!
You will fight for me, and I will fight for you.
Most of all though, you will just be my Mum, and I will just be your daughter.
And now I have proof of what I already knew;
You really are one in seven billion.
In the past few months a few people have requested for me to write a blog on what it’s like to love someone who has a Serious, Chronic or Terminal Illness (of any nature), from the partner’s perspective. The woman that this blog explores is not myself, or any one particular person. Rather it is a collection of my journey, and the journey’s of others who I have been blessed enough to share with them. One day I hope to be able to write from the perspective of someone loving a man who is unwell, however for now this is a good place to begin, in more familiar territory.
All lyrics are from ‘Bloodsport’ by Rayleigh Ritchie.
Love and light,
Nothing is perfect but your imperfections are quaint
And your love is worth it and for that I will wait
And though you hate me, when you have a turn
I drive you crazy but you always return
Just as sure as she could appreciate that I was never going to be the type to pick my towels up from the bathroom floor, I understood the betrayal of her own flesh. She could never hide it, nor would she have. She was defensive. ‘Love me, love my disease’. She expected me to lurch for the handle and never pause to look back, and deep down I think part of her wish I had. That way I could never leave her later, she would have too much to lose. It would destroy her. No, she couldn’t live through that again. But now? It would be a clean shed, requiring nothing more than an indifferent shrug.
She was curled on a mattress on the lawn that she made me drag outside. ‘What’s the point in having a lawn if you can’t make it a bedroom?’ she argued. If I really concentrated, I could make out the puckered scars peeking from the gap between shirt and short. But I couldn’t concentrate, not when she looked like that. She grinned at me from beneath a hat of Audrey, and in that moment I made my decision. Love you, love your disease. It added nothing but an extra flair, and made her vivaciousness all the more exciting. Besides, how bad could it get?
If I fall short
If I break rank
It’s a bloodsport
But I understand
I am all yours
I am a man
I’m on all fours
I was full of promises, and I promise you that I believed them. They were not yet tinged with regret, and I’m still unsure as to who would live to regret them more. God knows it sounded great. Never let the truth get in the way of a good story, isn’t that what they say? Truth be known it was firmly cemented in my own personal mantras. But I really did sound great, that’s the thing.
‘No matter how bad
‘You don’t know how bad it will be.’
‘Even if you can’t’
‘You will have to carry the weight of a pair’
‘I will go to the end of the earth’
‘You still won’t find the cure’
‘No matter what’
‘But what if’
I shut her up. And I kissed her.
I felt her hand slap me cold. Her eyes were wild. Don’t do this to me. Don’t do this to me. Don’t let me love you.
And I carried her to our bed, where we stayed until the stars seasoned the sky once more.
No matter what.
Loving you is a bloodsport
Fighting in a love war
Although you love me, sometimes we meet
Things can get ugly but we’re still a team
We are an army, the brakes are within
But that’s why we’re stronger, and that’s how we’ll win
It’s not what I’m in love for, I know
But I don’t know if you can’t help it
Baby, I’m just being selfish
I creak open the door and now I don’t know how to breathe anymore. There’s so much blood. She screams at me. Get out, just fucking get out. I gather her into my arms and feel her chest break in two. I swallow hard and hope that it is enough to drown both of our cries. Don’t look at me, don’t look at me. So instead we lay on the bathroom floor together and I listen to her howls. And it is then that I break my promise. Love your disease. She is too sick to care that I have just taken all from her that I ever gave.
Not all the days and nights are quite so piercing, it’s the days in between that hold a quiet heart break; Too well for admission, but too sick for life. She smiles weakly from beneath the sheets. Ironic isn’t it? Sleep steals her from me more than the daylight hands her back into my arms, and I see her eyelids fight it, more for my benefit than hers. I would be lying if I said I wasn’t disappointed each time the former wins. When she awakes, she snaps at me. Why don’t you just leave me already? It’s not like we ever get to spend time together anyway. She woke each hour on the hour, and I am too tired to side step the net. It seems to be what you fucking want, why can’t you just accept that I want to be with you? We don’t speak to one another for the rest of the night. Later I find her angrily blinking back tears as she wrestles with a lone button on her bottoms. With only our hands speaking we find our way into the shower, and all is forgotten once more.
I’ve got your back and though it’s stacked against us
I’ve got your hand, it’s us against consensus
And I will burn the people who hurt you the most and I will not learn
‘Cause I am too young and too dumb to consider the terms
One day I wake long before the sun has felt the need to lazily roll out of the sky, and I realise that we have found our normal. Mondays are treatment, and Tuesday’s are tired. I cup the mucous from hher lungs after dinner but before bed time meds, and the dog eats another shoe. Wednesday she may study and Thursday she will do her best impression of the dishes. Thank god it’s Friday and shit did we forget to get her scripts filled? She is lonely during the day, too exhausted to play host to anyone other than the mail man. The weekends are hers, and she grabs at me so intensely that I am sure she will never let go. I’ve missed you, she mumbles. If she is well we will drive to the beach and I will yell at the dog for rolling in all unholy things that are to be found on the stretch of sandy dog haven. Often as I see other pairs walking past hand in hand, I try to imagine what they see. I wonder if they see how beautiful she is.
I’m breaking the law and I’ll curse the day that they return
With a smile on my face as their heads hit the floor
And it’s done, now it’s curtains, the blood lost, it’s the cost, it fucking hurts
But it’s working and even if you ask me to stop it’s too late
Because I’ve already decided that faith is not a distaste, it’s pure hate
And it pulsates and it works its way around my brain
Love me, love my disease. I still remember my promise, and despite my best intentions, I can’t bring myself to love all that destroys her. She is hurt. I stare at her in disbelief. ‘Are you seriously pulling my leg right now? You’re offended I want them to make you better?!’. She spits back. ‘Of course I am; I’m just too much for you. Why can’t you say it. Love me, love my disease! What a load of shit. I should never have believed you’. I motion to the powdered lollies tiling the kitchen bench, the vomit bag clutched in her hand, the blood staining the ensuite bathroom no matter how much grease I bleed from my elbows. ‘This! I can’t love this! This isn’t you. This is killing you. Can’t you fucking see?’.
I took the forbidden fruit and threw it in her face. And to my shame, she apologised. ‘I’m sorry this is killing you too’.
I don’t know what to say. If I tell her it’s not, she will hear my lie. So instead I kiss the top of her head, and tell her she is beautiful hair or no hair.
I work my way to her lips, and tell her that the vomit never mattered.
Her collarbones are next, and no matter how sharp they poke, she will always be woman to me.
Her spine, watermarked by bruises. Her belly, puckered and pale.
I kiss every inch of her, and of her disease.
No more fixing. No more searching.
Love you, love your disease.
And I promise all once more. Each time I mean it a little more.
Neither would have chosen our sad and gentle reality, punctuated with screams in the night and raucous laughter after half a beer and a Saint Bernard. With each day that passes I can appreciate a little better just how much her illness holds the ability to destroy everything I ever loved, and take as much from me as it does from her. Some days her eyes forget how to smile, and she cannot wake for longer than an hour. If sleep does not steal her from me, then the medications takes its place. People look at me and they don’t understand why I would choose this life. But just as sure as she did not choose this illness, I did not either.
I chose her.
And I will forever play this blood sport, if only to hold her for an hour.
This blog is an intensely personal one. All my blogs are, however this reveals the moments that have shaped my year. The pain is still raw. I do not sleep very well anymore. My senses are heightened. I still jump when I hear a siren. I sob into the plughole and try to curl so deep into myself that I may disappear all together. This year has hurt me like few others. I am fragile, and I am afraid. I hope that you understand. I am not avoiding any of those that I love. I am just hurting, that’s all.
But most of all, together as a family, we made it through.
This blog is for my family- My soft spot to land.
produced, introduced, or discovered recently or now for the first time; not existing before.
I was panicking, borderline hysterical. My breaths were ragged, sharp. Mum tried to soothe me. ‘Calm down, it’s only a calendar’. She didn’t understand, she couldn’t. And nor did the lady at the stall. ‘Well, we have lots of lovely calendars’ she offered. It just needs to be new. I didn’t care for flowers or Van Gogh. Do you just have something that is fucking new?
Every New Years Eve it’s the same story, the same Facebook statuses, the same bold promises and the same affirmations. Next year is going to be better. Next year will be my year. Next year I will lose weight/get healthy/be happy/fall in love.
Next year will be better. I just wonder if any of us understand what better is.
It all started with a mole in January. And the mole turned into a doctor’s appointment. Which soon became a referral to a specialist. And before we could appreciate the reality of what we were dealing with, a scalpel sliced my dad’s abdomen in two to remove the Melanoma. It was stage three. It was almost the worst, but we were lucky. It was a single millimeter off the worst.
February was my second year of Uni and I was so determined. God knows I wanted this; I wanted it more than any of them. I would look around at their mini skirts and drunken Wednesday nights and I understood that I wanted that stethoscope more than they wanted for their next breath. Believe me when I say that I tried. I really, really did. I would be the best nurse that they ever saw.
As the leaves began to fall in March, I was in love. I cringe to type it, but what would my writing be if it were not the truth. I was in love. Promises of barefoot weddings in the sand and a blue home by the sea were made. He kissed my bones and for a moment I could believe that I was enough. He was my best.
It was April, and another admission to emergency. We joked that perhaps my heart could not handle so much love. He held my left and Mum held my right, and together we formed a trinity through the tubes. When I woke we would post my invitations, and it would be wonderful. We made the best.
May and may I begin to weep. Twenty one. I made it. I have never felt so much love in a single room before, friends from far and wide. Car trips, train trips and plane trips. There were speeches and oxygen and vodka. At the end of the night, she stole a quiet moment. She whispered in my ear ‘You saved my life’. And I just squeezed her hand. It was the best twenty-first present in the world.
June is blue. June is panic. June is terror. June is when Mummy stopped breathing after dinner. June is calling 000 and pausing for a moment. June is saying to a man I had never met that my Mum had stopped breathing, and June is expecting a stranger to help me keep her alive. June is telling Daddy how to position her on the floor to begin resuscitation. June is sending baby brother to the mail box with a torch to wait for the ambulance. Later he sobbed and told me he was sorry. I couldn’t find a torch, so I took the garden solar lamp. I’m sorry. June is the paramedics telling me that she wouldn’t have survived another minute without adrenaline.
July and it can’t be happening again please god no not again this can’t be happening please just let her breathe. This time there is ICU and special doctors with special machines who wear special voices to say special things. Daddy cries and I don’t know what to do, so instead I make him a coffee and pretend that I know what the fuck I am doing.
August. We are tired. Big brother almost injects the adrenaline upside down. Baby brother brings out six cans of coke for each paramedic gathered frantically in our driveway. ‘I thought they might be thirsty!’. I choke on a sob. I don’t know how we got here. I don’t know how we found our new worst. I just want it to stop.
September. Wake me up when September ends. We can’t do this anymore. I slump on the floor in the ICU waiting room. Parents are screaming for their dead child and I am sobbing for my dying Mum. We don’t try to comfort one another. You don’t do that in the ICU. Your own tragedy is enough, and you avoid one another for if you meet you will surely break all together.
I watch them attach the defibrillator, and I snap at the head ICU consultant. I thrust a research paper into his hands. ‘Severe catamenial anaphylaxis, with a prodromal phase of upwards of 3 days, resulting in sudden respiratory arrest, VT and requiring on average 15 separate administrations of adrenaline’. He told me he was sorry, he didn’t realise I was a doctor. He explains to me their plans to intubate. I tell him I’m not a doctor. I’m just trying to save my Mum’s life. They listen to me a little bit more after that.
That night I go home to his arms. He tells me that no one else will ever put up with someone like me.
I just want to die.
October. Operate. We are running out of time. I keep telling them ‘You have until the 28th. She can’t survive another attack’. Their hands are tied. We have to wait. Once more I thrust research papers in their hands. I tell them that if they do not also perform a complete oopherectomy, Mummy will die.
They perform the oopherectomy.
My Mum survives. I ended it with him. And now I don’t want to survive.
November. November is placement. I worked for this. I worked so fucking hard. Do you understand how hard I worked? With IV’s in my arms and my hands stroking Mummy’s hair as she hovered in uncertainty. I tried. I tried and my ribs swelled and my heart swelled and I kept trying.
And then they sat me down. And told me that I was too sick to be a nurse.
And I cried so hard that I cracked a rib. I lost my reason, and found my worst.
Baby brother was awarded first place in a world wide engineering competition. He receives a $300,000 scholarship. He found his best, and I have to be happy with him. I am. I just wish I could have some best too.
December. I have applied for psychology. I have already begun to order my books. Sometimes I cry when I think about him, and sometimes I vomit. Always I feel safe. Mummy is alive, and is attack free for three months. Just quietly, I think I helped save her life. Dad still has No Evidence of Disease. My baby brothers are learning to be brothers once more. We are learning to breathe a little easier. We do not jump at every mole and every cough.
Most of all though, we have we. We made it.
This year was my worst. And it was my best. And next year will also be my worst, and my best. I now understand that every single day holds the capacity for a new best, and a new worst. You too will find your new bests and your new worsts, in places you never expected. Your best may be in a gutting decision and your worst may be in the arms of the one that you love. You will love and you will hate, you will fear and you will embrace. You will be happy and you will be sad. You will make mistakes, and you will disappoint. You will achieve and you will succeed.
All I ask is that you don’t cheapen the best and the worsts of this year. Because there will be more and one day you may not even remember them. Just know that they mattered.
I will make only a single resolution for the coming year.
That every day I will appreciate my bests, and respect my worsts. Because at the end of the day, that’s all our days were ever really made up of. And those days wouldn’t be quite as beautiful without them.
“So, this is my life. And I want you to know that I am both happy and sad at the same time, and I am still trying to work out how that could be”- Stephen Chbosky
When I was fifteen, I had a pet duck named Jerry. Twelve hours later he was dead. The cause of death? Drowning.
These are the moments that define my life; It isn’t being accepted into nursing, or travelling overseas, or learning to walk again. It’s the drowning of my duck. And the day that my brother got stuck in a chicken wire rabbit hutch and I had to hose him out. Or getting t boned in a Safeway car park on Christmas Eve by an elderly man who flatly denied he had actually driven into me, despite the fact that his Toyota Camry was still firmly wedged into my back left door.
I’m not one to view the glass as half empty; in fact, if you were to ask anyone, they would likely tell you that I think my glass is more full and more fabulous than yours could ever be, regardless of whether I had a glass left or not (And it may or may not have a drowned duck in there). I’m simply beginning to realise the importance of acknowledging mediocre days.
You know the kind; the days where nothing terrible happens, but nothing overly wonderful happens either. ‘No, my family and golden retriever weren’t killed in a freak silo accident, but I didn’t win the lotto and fall in love either’. You feel ordinary, but you really have no real reason to complain, or account for the fact that you don’t feel great, so you just have to sit there feeling pathetically mediocre.
Recently I have been reading a book called ‘The Happiness Trap’. It’s like one of those horrendously cheesy self help books which you find in between ‘The dummies guide to telemarketing’ and ‘What to expect now your body is changing; a guide to puberty’. Except, it’s not really a self help book.
Because it doesn’t promise to teach you how to become the next Miranda Kerr, or how to leave your job and become a Saint Bernard Breeder, or to appreciate that yes he really IS that into you, he just doesn’t return your calls or actually know your name or understand why you are standing in his office. All you need to do is log onto your Facebook, Instagram or Twitter to appreciate that we show a serious level of commitment to being happy, or at the very least appearing to be happy to everyone around us.
When was the last time that you updated your status to inform everyone that you were stood up on a date, or uploaded a photo of the holiday from hell where you spent new years eve sitting on a toilet with bali belly? Or when did you last tweet your favourite actress to thank them for making you feel horrendously inferior, or sent a shout out to the ex that broke your heart?
Chances are? You haven’t.
We like being happy. Why? For the very same reason that you eat ferrero rochere icream straight out of the tub; it feels good. But perhaps even more so; it is seemingly expected of us to be happy. We are forever being reminded that we should feel grateful, blessed, inspired and empowered. We aren’t starving to death in Sudan, or fleeing conflict in Syria. We live in a world in which McDonalds is open 24 hours for our convenience, and Education is a right, not a privilege.
We are the most connected, educated and wealthy generation to date.
So why aren’t we happy?
I have spent the past seven years utterly convinced that if I could just go into remission, just stumble across the magic cure, I would be happy. And who wouldn’t be happy with that? Six months ago I learnt that there would be no cure for me, such is the beauty of genetic disorders. In that instant, the images of running around the local lake and not beginning my mornings retching into the sink disappeared. But I didn’t feel any less happy, just as I didn’t feel any less sad.
We are taught that happiness is a destination; all the magazines, books, television shows and forum pages scream their solutions at us. All you need to do is flick through the latest Marie Claire to learn that happiness can be found in five simple steps.
‘The Happiness Trap’ challenges this idea. In the words of one of the oldest clichés; it’s a journey, not a destination. And like all feelings it comes, and it goes. And it comes back again once more, and so on the cycle continues. But the more we believe that we can achieve it, a permanent state of bliss, the more we set ourselves up for bitter disappointment.
For the longest time I had myself convinced that I was so close. If I just finished high school. If I just got accepted into nursing. If I just began working. If I just fell in love. If I just had higher cheekbones. If my scans were just a little clearer, then happiness would smack me in the face like a Saint Bernard puppy on Ketamine. There were so many justs. And yet, in the same breath people offended me. ‘How can you be happy? You’re sick’ they would say with pointed tongues (To which I typically responded by pointing out that they were total fucking muppets and they managed alright themselves).
Everyone says ‘As long as you have your health, nothing else matters’. But it’s not true. I don’t have my health, and plenty of things matter to me, like the fact that I am volunteering in a Thai orphanage next year, or that I plan to study my post grad in the UK, specialising in Paediatric Intensive Care. Or my family, who keep me just as mad as they do sane.
We live in a society which values certain things; health, beauty, intelligence and financial wealth. These are the supposed keys to unlock the magic door to the land that is happiness. But over time I have learnt that no such key truly exists; happiness will come and it will go, just as will fear, disappointment, guilt and excitement. None are dependent on the other, just as none are responsible for the other.
I don’t have my health, and I don’t have a boyfriend. I don’t have millions of dollars and I don’t have a Saint Bernard.
But I do have good days, and I have bad days. And I have mediocre days in-between. And I am happy. And I am sad. And I feel an infinite number of other things. And, like all feelings they will come, and they will go.
And just as sure as the sun will rise, tomorrow they will be back once more.
I have been Chronically ill for seven years.
This year I, along with my brother, was diagnosed with a connective tissue disorder. It is said that my other brother also has the condition, but he is yet to undergo full testing.
We have a mix between Marfan’s Syndrome and Ehlers Danlos Syndrome, each of which are connective tissue disorders. They are both debilitating, and both life threatening. I fit more into Marfan’s, my brothers fit more into EDS.
This blog is about learning you have a genetic condition later in life, and all the pieces of the puzzle beginning to fall into place.
But, despite knowing what our futures may hold, it is ultimately about the fact that our genetics will not determine our futures.
I based this song very much on the lyrics ‘Wildest moments’ by Jessie Ware, please be encouraged to listen to it as you read.
“It’s an important point to realize that the genetic programming of our lives is not fully deterministic. It is statistical – it is in any animal merely statistical – not deterministic.”- Richard Dawkins
It was pre-determined of course, long before I became familiar with the term Autosomal Dominant. It would be easy to think that it was an accident, an anomaly, a chance mutation. Sometimes these things just happen they would have assured us. But of course, three matching anomalies don’t just happen in the same family. No one has luck that bad, despite appearances to the contrary.
My parents are soul mates in every sense of the word. They are a perfect fit, hopelessly destined in their opposites. They are the two odd socks in the basket who, when you bring them together, make the most wonderful puppet. Somehow, despite it all, they match.
I have her eyes. They change colour in the sun. People remark on them, a backwards compliment. Your eyes are bizarre. They are wonderful. And I smile. I got them from my Mum.
The boys have his shoulders. So broad, so muscular, the ladies smile. My brothers never were great at modesty, and strut with a greater sense of pride.
I have Dad’s words. Nan claims that he always was going to be a journalist. Dad denies it vehemently, but with each of my successful publications Dad reminds me of the career he was once destined for. We leave each other words of the days. He will burst into laughter at the work canteen. Interdigitate. I will roll my eyes on the train. Discombobulate. We are bound together by the print within our tongues.
The boys have Mum’s gift of the gab. B has a voice of silk, while J has them splitting at their sides with his latest antics. Together they could sell snow to the Inuits, and I have no doubt that they have already tried.
Whether it was pre-determined is yet to be understood. Perhaps it was written in the stars. Nan assures me that it’s all a part of God’s plan, while Mum reassures me that everything happens for a reason. Dad isn’t quite as comforted by his belief in statistics anymore.
Together, my parents created three statistical anomalies. Autosomal dominance means that only one party is likely to be responsible. And for this I am grateful that we will never know which, not unlike the firing squad with one blank gun. Guilt is the one thing surest to crush any parent.
The picture was nothing but a blur for the longest of times. We didn’t enter this world with the knowledge that we were genetically imperfect, our birth notices didn’t announce the birth of my parents lacking genomes. Looking back at our photo albums, it all makes sense of course. But it’s easy to look back with acquired knowledge and not understand how we missed what was staring us in the faces for so long.
Being diagnosed with a genetic condition later in life is no different to being told that you have been using the binoculars upside down for all this time. Suddenly everything that was once a clash of confusion comes into focus, and it cannot be unseen.
Thunder filled our skies, and smoke filled our family home, curling the childhood happy snaps. Something was amiss. But of course, until you see flames, you can continue to fool yourself that the smoke is fog, and the fire is just the flames of paranoia.
Brothers have been competitive since first light, and mine are no different. As little ones, they competed to see who could dig the furthest in their sandpit. As they grew, they competed to see who could dislocate their arms the most, their own pits contorted to match the horror on my parents faces.
We were tall, and so was Daddy. That was nothing unusual. But we were too tall, and too thin. I would return from school each afternoon, distraught at having been called the Spider girl once more. Dad held me tight. ‘Jess, when you are 18 and being paid a million dollars to walk down a catwalk, they won’t be calling you names anymore’.
Two years later, I was confined to a wheelchair, and my catwalk future became my catwalk past.
My brothers and I became locked in a game of Russian roulette. There was one full bullet. One half. And one blank.
I took the first hit, and to my own relief, the heaviest. I hated them for it of course. Why me? Why now? What did I do that was so wrong? What did they do that was so right? As they went to school, to parties, on first dates and school camps, I hated them from my hospital bed. But with time and disease comes maturity and understanding. If I was given the chance to swap my bullet, I would change only one thing.
I would take all three for them.
And at times, it almost seemed like I had.
Not a single joint, muscle or bone was left unscathed. The catwalk had long been replaced by my own parents having to feed and dress me. Next it attacked my reproductive system, my chances of one day having a mutant family of my own. For months on end I laid in a pool of my own blood, and questioned the point of it all. Then came my heart.
B. was given the half bullet.
His ears were cupped and adjacent to his little head. His cuts and slices would never heal, despite my Mum’s desperate attempts with aloe vera and sutures. His skin stretched as far as his imagination, and how we loved our little gumby brother. Last year he picked up a Frisbee, and dislocated his knee. And it never stopped dislocating since. Each morning in the shower, gritting his teeth, he would tearfully place his patella back in place, and hobble off to school.
This year he underwent a full knee reconstruction. The surgeon casually remarked ‘Oh yeah there was nothing actually holding his patella in place anymore, it just floated’.
When I learnt that his heart was spared, I wept tears of relief. But I would be lying if I were to say that, in that moment, I didn’t hate him for it, just a little. That hate was replaced with overwhelming guilt when his little knee never healed.
J is the blessed one in this tragic trio. It’s funny how disease changes our idea of what it means to be blessed. He wasn’t spared, that much is clear. All you need is to spy him laying on the couch, eating MnM’s out of his pectus excavatum to understand this. He is towering of course, and how the ladies admire his ability to fill a doorway. The guys are equally impressed by his ability to dislocate his shoulder for the most delightful of party tricks.
Of course, the true extent of his bullet is yet to be understood.
He refuses to have his heart tested.
He doesn’t want to be like his big sister.
From the outside, everyone wonders why we try.
It would be easier of course to scream unfair play, and spend our lives begrudging biology, the healthcare system, the government, anyone and anything which could possibly have determined our reality. It would be easier for my parents to stop working full time, and to care for us full time instead. It would be easier for me to spend my days at home, rather than pushing myself to the extremes of my genetics every single day, simply so that I can say I am a nurse. It would be easier if we said goodbye to the simple pleasures so that the $15,000 per year in out of pocket medical expenses were more easily afforded. It would be easier if B dropped out of school and spent his days preventing his next dislocation, rather than putting himself back together in between classes.
The truth is, our genetics do not need to pre-determine our lives.
We share a genetic condition. That is pre-determined.
I will fight for my life, for the remainder of it. That is pre-determined.
B will spend the remainder of his sliding in and out of place. That is pre-determined.
J’s children are just as likely to take a hit from a full bullet as myself. That is pre-determined.
Each of us will continue to develop more complications. That is pre-determined.
But that is where any pre-determinations end.
Because in our wildest moments, we are not a family of medical Zebras. We are our greatest. We are laughter in an emergency room, and laughter in our lounge room. We are fights in the backseat of a car, and arguments in an ambulance. We are holidays on the riverbanks, and we are holidays in the hospital cafeteria. We are family portraits with the golden retriever, and we are family portraits with hospital gloves pulled over our heads.
This is my family.
If you look closely, you will see that it doesn’t matter how pre-determined our genetics and their diseases were.
The truth is, it never really did matter.
As long as we are together, each of us can be our greatest.
Our statistical significance is that we will continue to try.
And this is why.