Music has been a universal part of human existence for 35,000 years. Across countries, cultures, and continents, the urge to create and experience music has become so deeply embedded in history that it has melded into our DNA. Music can become so easily entwined with our lives without notice. It weaves its way into our most sacred moments; between weddings and funerals; school dances and first kisses. When given the chance, music can change your life without you even realising it, when so desperately needed.
Cystic Fibrosis (CF), like music, also has the power to change lives, literally, as a life-limiting genetic disorder. It slowly takes the lungs, digestive system, and even the reproductive system as it pleases. There is no cure. Most people are screened at birth using sweat and blood to identify the gene that causes CF. Most people are diagnosed within the first two months of their life… except for Ellie.
Ellie grew up the stereotypical sick kid; there wasn’t a cough she couldn’t catch or a sniffle that left her alone. Eventually, runny noses and sore throats turned into chest infections and stomach pains intense enough to merit a hospital trip. After one chest X-ray, and a very late sweat test, there it was: Cystic Fibrosis – making itself known as loudly as a bass drum.
The hospital visits blurred. Imagine baby Ellie, hospital bound, IV drip in one arm, Big Mac (no pickles) in the other. Family is coming and going, the room warm as she makes jokes, keeping smiles on faces. This blackout response to her inpatient visit would be labelled by any psychologist as a trauma response, but she was also an 11-year-old girl who had been given an estimated life expectancy of less than thirty.
It was as if, rather than finish a song, a composer came along midway and put rests in the place of notes. Everything was different, muted, from that point on. Ellie described it as ‘the moment I realised I wasn’t the same as everyone anymore; I was treated differently’. School was no longer the same. Missing classes for endless appointments. Isolated classrooms during winter cough season. Skipping weeks of school at a time while classmates shared germs. Ellie’s life morphed into something unrecognisable.
Prevented from researching her own disease due to the uniqueness that comes with every CF diagnosis, and removed from the old life she knew, Ellie was alone. Ellie, the little girl who cracked jokes when she was in the hospital to make sure others smiled, had nothing. That was until November 25, 2013. Midnight Memories by One Direction drops - and suddenly, the music is back.
An electric guitar riff, a quick high-hat snare drum combination, and a rich, fun chorus filled with rebellious lyrics completely changed the perception of the previously tame boy band. Quickly, Ellie fell in love - a love (or obsession) that continues to this day (see the word ‘one direction’ tattooed across Ellie’s right thigh). Music came back, softly, but there. From then on, whether it was the power of One Direction or some other unseen force (although Ellie will always agree on One Direction), things seemed to get better. The forty-seven minutes and forty-one seconds of the album on repeat twenty-four hours, seven days a week, made doctors’ appointments seem less draining. The time between needles grew, and the feeling of normalcy was slowly returning. A few months after her 1D revelation, when a passing doctor mentioned Make-A-Wish, Ellie had a chance to let CF do something good for her. They offered her the chance to do anything imaginably possible - a once-in-a-lifetime chance.
Naturally, Ellie’s cliché first choice was Disneyland. This didn’t happen. Disneyland wishes are few and far between, and Ellie, whilst having been on a run of good luck, wasn’t that lucky. But then again, she just hadn’t been offered the holy grail yet: a chance to meet One Direction.
After months spent throwing up, full of stomach aches and a yellow tint to her skin, Ellie no longer felt normal, and her life’s song faltered as doubt began creeping in. A friend suggested that she would be perceived as ‘just another sick kid’. The girl who cracked jokes and never got scared once in the past two years, who wanted to be more than a disease, was terrified that this was the only way she would be perceived. Music, the one thing she had that made her like other girls, being corrupted by CF was unthinkable. After months of tossing around her options, Ellie finally agreed to go. The chance to see the boys finally outweighed the many negatives she could think of.
After weeks of anticipation and butterflies that rivalled her past chest infections, there she was in the back room of Etihad Stadium, waiting. She waited for the appearance of pity in the sea green of Louis’s eyes, or sympathy found within Harry’s smirk. Yet there was none. She was just a fan, just Ellie, the One Direction fan. She had just experienced what every other fourteen-year-old wanted; it was a massive accomplishment. If her idols (boyfriends) didn’t treat her any differently, why should she be made to just because of a few extra strands of DNA?
With the boys up on stage performing ‘Right Now’, Ellie realised that she was just like the other 59,253 fans there. She was no different. And as long as she found something to fight for, to be better for, ‘finding the accomplishments in the small things,’ she wouldn’t just be the girl with CF; music was there to help her along the way. ‘It started with needing to be healthy for the next album, then the next tour and as I grew and matured the small things did too. From needing to be healthy for my dog (Steal My Girl, One Direction), to getting my license (5SOS Youngblood).’
So, years later, me on the scene in Ellie’s life is when music strikes again - another whimsical moment of inspiration. At the witching hour between saying goodnight and good morning, in a car on the backroads of Werribee listening to the chorus of her friend’s voices streaming out the windows as they scream along to Chappell Roan, an idea strikes for her first ever fundraiser as a new and official Make-A-Wish volunteer. A drag bingo night, one that screams of her own love for drag and the queen inside her. It’s her next small accomplishment to stay healthy for. One where this time her friends will cheer her on and support her. Because life is made up of small accomplishments, and now that Ellie’s been given a new life expectancy of sixty years (a little bit thanks to Kalydeo – and a lot more thanks to one direction), you’d be crazy to stand in her way.