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.




  1. 1.

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.

da vinci

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.

hospital love

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.

garden lamp

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.

paramedic scene

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.

waiting room

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.

hour glass

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.

rib sketch

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.


4 thoughts on “New

  1. For everything you and your beautiful family has endured this year, I hope that you’ll have a series of bests in abundance for a while. I know that all those devastating moments will one day be turned into the foundations for the most brilliant times of your life, because that’s what you do, turn crap into gold (if you haven’t managed to alchemise them already). It may not necessarily have to be better, but I wish that next year at least bring some of the most joyful moments of your life.

    I really hope next year is a Happy New Year for you. But whatever happens I know you’re going to be amazing ❤

  2. Jess, you are a superb writer and a brave woman. Your family has been through a lot – the strength you have is like superglue.
    I wish you all the best with the psychology degree, and I hope you continue writing. Do a short course, and get published.
    Keep fighting

  3. Wow this really touched me. I have Marfan’s too and my dad passed away in 2013 partially because of it and I know how it is to be afraid. Stay strong, I have so much respect for you.


    • Hi lovely, please accept my sincerest apologies for this very late reply to such a touching message. I haven’t been well, but I am very sorry, and I truly appreciate you sharing some of your story with me. I am so sorry for the loss of your Father. I have infinite respect for your journey, with love and light x

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