My life of "will nots"

I  FIRST met the incredible Jess Marshall about 12 months ago.

Jess and my eldest daughter, Laura, have similar illnesses, and Jess has quickly become an amazing mentor and friend to Laura.

The 20-year-old, who lives with her parents and two brothers at Haddon and is training to be a paediatric oncology nurse, is also a gifted writer and has her own blog, Kisses from the Fight.

The first day we met and I heard Jess’s story, I was very moved.

I knew it was a story that needed to be told.

But I also knew the best person to tell it was not me, but Jess herself.

This is Jess and this is her story.

"EVERY tragedy begins beautifully. I was no exception.

Sometimes I wonder what if someone provided us a glimpse of the tragic portrait that was to become our lives?

What if they told us to run? I’m not sure that I ever would have stopped.

I was beautiful in only a way that 13-year-old girls can be, long-legged and tragically naive. I was too clever, impossibly so. My parents, teachers and friends all stared at me in greedy anticipation. I was going to be a paediatrician, a journalist. I was going to be everything and more.

I was too old to believe in fairytales. Everyone knew that the big bad wolf wasn’t real. Until on March 29, at 14 years of age, the big wolf broke into my room and swallowed me whole. He never spat out a single bone or tooth.

Mummy and Daddy came running. Someone was screaming.

“Mummy, I can’t walk. Daddy, help me Daddy.”

That someone was me.

The first six months passed in fits of desperation. There was never a more tragic sight than the parents of a dying child. One day, I saw Daddy crying while he mowed the lawn. It was then that I understood. And as Daddy cried, I sat in my wheelchair and tried to understand how everything had gone so wrong.

Severe myalgic encephalomyelitis (chronic fatigue syndrome) and fibromyalgia (a condition that causes widespread pain in the muscles, ligaments and tendons) – these are my poisoned apples, mere letters thrown together carelessly to create heartbreak.

These words were irrelevant to me. It was the screams which they spat into my life that mattered.

There were the 30 medications Mummy had to dribble into my mouth dawn and dusk. The countless scans in which they told me I “wouldn’t feel a thing”. 

Mummy used to place my broken wings in the bath, and we would watch the last of my dignity slip down the drain as she bathed me.

Within two years, I had transformed from a 13-year-old girl with the world at her feet to a 15-year-old girl who couldn’t tie her shoes.

I was admitted to Melbourne’s Royal Children’s Hospital to learn how to walk again. Here I met the specialist who would save my life. He asked my parents what they wanted from him. They begged him to save my life.

He took a breath.

“I don’t think I can.”

And then I took a breath of my own. Just you watch.

The first day I began rehabilitation, my physiotherapists told me to write down my goals.

“In two months’ time, I am going to strut out of here.”

They knew better than to smile gently. We shared a quiet understanding; reality wasn’t an option for me. I demanded miracles.

For two months, my waking hours were filled with placing one foot in front of the other. I will never forget the first steps I took unaided. The entire ward screamed and cheered.

“Look Jess, you’re walking!”

I screamed back, “No I’m not, I’m flying.”

After two months, I had surpassed the wildest dreams of my 15 specialists and I strutted out of the Royal Children’s Hospital and into my infinite fight for life.

I have not gone into remission and I do not have my cure.

But I do have my life.

I attended high school part-time. Each morning, as I broke in my own spasms and blood, I would repeatedly whisper to myself “I am going to be a nurse”. My dream kept me alive.

But one day, I didn’t want to go to school. I was being bullied within an inch of my life. They said it was my own fault.

“If you weren’t sick, we wouldn’t bully you.”

Daddy picked me up off the floor. He told me that in that moment, I had a choice. I could curl up on the floor, let my disease kill me and let the bullies win. Or I could pick myself up, continue to fight and become the best paediatric oncology nurse that ever existed.

I chose the second option.

Last year, I graduated with one of the highest ATAR scores at my school and was accepted into my university to study a Bachelor of Nursing.

For six years, my life has been an echo of ‘will nots’. Jess will not survive. Jess will not walk again. Jess will not complete high school. What they didn’t know was what I had as my own “will nots” – I will not listen.

I thank them for the challenge. 

Two years ago, I buried my best friend Tayla after she lost her fight with cancer. Before she died, Tayla whispered to me “life sucks sometimes Jess, but God it’s beautiful.”

There was once a time that could not see this. Six years ago, if someone had thrust into my heart that picture that would be my life, I would have run to the edge of the earth, and even further still.

But now I understand something that the healthy me never would have – sometimes you need to be broken in your bed to see how pretty the sky is.

This isn’t the picture I would have painted for myself, nor the colours of my choice. People see my picture and they weep. But they cannot see what I can; they cannot see the view.

Stand here and look with me.

Catch sight of the stethoscope which drapes along my neck and know that one day I may save your life. Meet the patients whom I mentor and see that the strongest of hearts come from the weakest of bodies.

Hear that Daddy doesn’t cry when he mows the lawns anymore and see that Mummy has tied my wings back together, while my brothers passed the thread.

Know that there is no cure for me and know that there is no chance of remission. And, above all else, know that it doesn’t matter.

My name is Jess. I am 20 years old and I am chronically ill. I love the smell of sunlight and I want to live in a blue house. Each day as I fight for life, I giggle through the bullets and give thanks to the butterflies.

And most of all? I am desperately, madly in love with life.

And that’s more than what most people can say.”