For the last three months I’ve felt like I am running out of time.
Remember that science fiction movie starring Justin Timberlake? He lives in a world where time is money. The rich live forever while the poor are constantly trying to make enough time to stay alive. In the opening scene, Olivia Wilde has less than two hours left on the timer etched into her forearm. She tries to catch the bus home but can’t afford the fare. She has no choice but to run against the clock. Just as she gets close to safety, her timer stops.
In a post-COVID world I feel like Olivia. Running against a timer someone else has set for me. This explains why my calendar next month is a disgrace. I can’t stop saying yes. It’s important for me to pace and rest, but I feel like there’s a timer etched on my forearm and it’s rapidly running out.
Because when Western Australia opens up to the world, life as I know it will stop.
I have Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) which means my immune system is dysregulated and hyperactive. Because of this, I react to benign things like food, medication, personal care products and everyday chemicals.
My reactions are severe enough that it's not safe for me to have the vaccine. Very little is known about my condition and there’s been no research to explore what happens when you poke an already angry immune system like mine. In a post-COVID world, where the vaccine is the golden ticket to freedom, this leaves me nowhere.
I may be stranded but I’m not alone. I’ve spent the last few months weighing up the risks of the vaccine alongside 8,000 other people who were nervous enough to join a patient forum for ME/CFS and the vax. Everyone is there because getting vaccinated means playing Russian roulette with our health. Some people have no reaction, others have experienced permanent and significant setbacks.
I don’t need a crystal ball to know which category I fall into. My health is like a house of cards, one wrong move and it collapses.
When I first acquired my disability, it felt like I was slowly fading away. Like I was disappearing from the world, piece by piece. I went from being someone who squeezed every drop of adventure out of life, to being trapped within four walls. Humans can get used to anything and my situation is not as severe as it once was. But that first year, the difference was so stark. Like someone had yanked me from my technicoloured life and drained all the colour away.
Silly me for thinking the hardest part was over.
This article felt too heavy and melancholy to write at first. I’ve learned from experience that people like me are always hung out to dry by the systems who are meant to support us. Even so, every time I listen to the news these days, I feel like I’m being shut out from Australia’s future in a way that’s fresh and raw and leaves me feeling exposed.
I am not angry that Australia is opening up. I understand we can’t stay in our bubble forever. But I am angry that no-one is having a public conversation about what happens to the portion of the population who cannot get the vaccine and remain vulnerable to COVID.
Our politicians, our peak bodies, our welfare systems, our community services, our medical profession. Why aren’t these groups of people, who get paid to represent and support our whole society, doing a better job of bringing marginalised experiences into the mainstream narrative?
I want more conversation and debate about the people Australia is leaving behind. I want to be supported to make decisions that work for me and my health. And I want our systems to step up and work in partnership with people in complex situations, instead of expecting us to fade away.
My right to live freely has already been taken from me once. Just as I’m adapting to a new normal, it’s about to be snatched away again. If the world we’re evolving into is willing to turn a blind eye to this, and the experiences of thousands of others who are being shut out - I’m not sure I belong here anymore.
Natalia Hodgins
Natalia Hodgins is a communications expert, disability inclusion activist and the current Hireup Board Observer. Natalia is a writer, speaker and independent journalist who lives with myalgic encephalomyelitis / chronic fatigue syndrome.