Walking through the bushland near my childhood home, I reach a familiar dip in the old trails. I used to pass through these same trails on the way home from school, throwing rocks for fun and using fallen branches to chop down cobwebs that blocked the way. It was a time when the irritation of a progressive, chronic illness hadn’t entered my life and my ability to wander without struggle was the norm.
I reach the top of the other side of the gully. Suddenly, I am struck by a rare feeling of bliss. I live with , an illness that causes a build-up of mucus in the lungs, sinuses, pancreas, and or wherever the CFTR (cystic fibrosis transmembrane conductance regulator protein) exists. This protein is responsible for regulating the flow of salt and fluids in and out of the cells — a fault that makes day-to-day functioning without a range of medical treatments, oral medications, and physical therapies difficult.
Everybody laughs when they are filled with joy. I cough
My physical health has been in a steady decline since I was a pre-teen. My lung function has dropped 20-30 percent overall, I struggle to gain weight naturally, and I live with CF-related diabetes as the result from a pancreatic deficiency.
Everybody laughs when they are filled with joy. I cough.
Everybody inhales intently when they smell something nice. I cough.
Everybody speaks when they try to articulate how they feel. I perform a mixture of trying to talk and trying not to cough.
For years, I have battled a cough through the simplest of pleasures. On the bright side, I have grown a neat set of abs thanks to the constant, clasping rigour of suppressing my coughs, coupled with the difficulty the disorder lends to storing body fat.
Recently, I began taking a new drug called Trikafta. Now subsidised by the PBS, Trikafta is a gene modulating medication which, in short, corrects the defective DNA coding that is caused by the cystic fibrosis mutation. It allows my body to regulate the linings where the CFTR exists instead of ‘building up’ mucus and causing obstructions. I take this medication twice daily. It is labelled a ‘miracle drug’ for its ability to essentially put a hold on symptoms and act as a neat antidote — until the next dose is required.
Upon taking Trikafta, I noticed a change within hours. The thick, sticky mucus residing within my airways came up effortlessly and, after a solid two days of purging, I cleared it all. My blood sugar levels started evening out, too, which meant I didn’t need insulin with carb-dense meals. Soon enough, my body became silent, free from the chaos. I sobered up and I could function with ease.
It was like having a congestive cold for the longest time, then suddenly being clear of it. Initially, it was amazing being able to talk, laugh, and smell without coughing. It wasn’t until later that I realised how much of my life has been spent managing the effects of CF — how much the disease has taken away from me.
It is a relief being able to go out without people thinking I have COVID, but this is only when I am on medication. Without it, I still have the symptoms of CF — that doesn’t go away. I have an underlying anxiety that if I am taken off it for any reason, or if it stops working, I will go back to where I started. It’s a life I am all too familiar with — but how do you cope with the anxiety of going forward five steps, only to know one day you might have to start from scratch again?
Adam bushwalking near his childhood home. Source: Supplied
I am used to these dramatic life-changing moments; they come with the territory. I developed an ability to come to terms with my illness. Complications arose constantly, whether it was weight gain, lung health or diabetes. I learnt to roll with the punches. Trikafta is no different in this regard; this world just comes with a new breadth of issues and possibilities – concerns that could be overcome with the resilience I forged in peaks of sickness. There are similar ups and downs with Trikafta, but the physical burden is exchanged for the emotional. Speaking to my therapist, friends and family has helped a great deal. Still, since there is limited research into the long-term effects of taking the drug, I can’t pin all my hopes on it.
I always knew my life would be truncated and difficult. I’ve tried to focus on building a life worth living
Even from an early age, I knew my life would be truncated and difficult. I’ve always tried to focus on building a life I felt was worth living. A “do it fast and do it well” approach: a determination that’s typical among those diagnosed with a terminal illness. Through trial and error, I decided to work part-time and spend the rest on health and hobbies. I have been playing drums since I was 10, and I now teach and perform professionally.
Living artfully gives me life when life taketh; it allows me to manage my emotions through listening and creating. Catharsis comes readily when the music matches the emotion. I take heart in the fact that what sets someone apart can also lead to creative flourish – like the drummer of Def Leppard, who lives with one arm and adapted his playing around his disability. Someone who crushes it despite his circumstance.
Today, what I live for has a new flavour to it. As I motion to return home from our bushwalk, I jump across the creek and hike back up the gully, reflecting on the possibilities that are now within reach. I have started training for a half marathon and playing drums frequently. It’s incredible to see how much I can do now. It still doesn’t feel completely real — like being myself in a stranger’s skin. For now, I must enjoy myself in this new life. As I continue to hike, a euphoric feeling rises within me, a joyous sense of the new world that looms, ready for me to explore it.
Adam Holmes is a drummer, musician and creative writer from south-west Sydney. Find him on Instagram:
