The space in between
Suffocating between accepting the unnatural life in the cage and the relentless, tiresome scheming of my escape
I started Running Rare to create the resources I wished I had when I was first diagnosed with a chronic condition. For a long time, I believed that meant I needed answers, or at least a positive resolution, before I could hit publish. But when I think of the stories that have impacted me most, they have shared one characteristic — vulnerability was as valued as answers.
Life with a chronic condition doesn’t always tie itself up in convenient resolutions. It is a constant struggle. Today’s letter ends with a panic attack. Still, I am publishing it because this, too, is part of my story. And I know I’m not alone—there are countless others living with chronic illnesses who quietly weather these debilitating storms too. I wonder what Icarus thought as the wax bubbled and began to melt. Did he panic as the last of the feathers detached and his demise was sealed? Or did he find solace in knowing he had committed fully to escaping his entrapment and had simply found himself lost in the excitement of a world without bounds?
It has been one year since I stepped back into the frontier of life without medication. The last time I attempted such a feat was more than six years ago. It was a decision I did not take lightly. My condition had stabilised, and now my medication had shifted from elixir to poison.
Both times, it felt like contemplating a plunge into dark, murky water—accepting that what lies beneath can only be revealed by submerging yourself. As you sink your body lower and lower, you surrender to the unknown. But there is a catch, a cruelty hidden in the fine print of bureaucratic process. You see, you are on an 18 month timer. If you slip beneath the water after your timer lapses, you will have to repeat the whole treatment approval process again — a crippling six-month odyssey. It demands everything of you. Day after day you are pumped full of yesteryears cheap toxins. Your blood and body interrogated for evidence to justify that you are still sick, or more importantly sick enough… worthy of the expense of effective treatment.
During my last attempt, I felt something brush past my body before it grabbed me and dragged me underwater in the fourteenth month. Fortunately, I narrowly escaped having to restart my approval process. It was a close call. Maybe the timely illness was the better of two evils. But this only further highlights the unfairness and blatant inhumanity of a 'fail-first' healthcare system.
I feel hopelessly alone, treading water, as I struggle against the tide of an amnesic system that will erase me from its memory if my sickness is not on time. As I inch closer to the end of the 18 months, this time around my ears are pricked and my hair stands on end. My anxiety increasingly grows. What will come first? The removal of my safety net or the return of my illness. Every sore throat, rash, or episode of fatigue causes panic—a shadow of what might be looming beneath the surface.
“Have I blown it?”
“Is this it?”
“Is this my fault?”
As my mind races, trying to find the answers to these questions asked in desperation, I realise that I have been snapped from the sky and caged like a bird for most of my adult life. My wings, once outstretched, are now pinned against the invisible bars of my illness, reminding me repeatedly of what I can no longer do. In the haze of a tired mind, I wonder whether it would have been better to only know of the cage, than to be haunted by the sky and my recollection of freedom.
Is the freedom I pursue merely a mirage, flickering on the horizon, always out of reach? I want what eludes me. I yearn for it obsessively. But it slips through my hands like fine sand.
This feeling of freedom has become a distant and increasingly unbearable memory, so far removed from my daily experience. With the passing of time, my concept of freedom has blurred, becoming more nebulous and abstract. So, I feel myself being torn in two directions: suffocating between accepting the unnatural life in the cage and the relentless, tiresome scheming of my escape.
I have been flapping my wings without ceasing, desperate for the lift that never comes. Until one day, I realised that the walls of my cage were no longer as apparent and concrete as they once were. This year, I have tasted freedom. I have flown from that cage, not stopping to look back to the point of exhaustion. Yet, the cruelty of an idiopathic disease—something with no known cause—is that the formula for my escape remains unclear.
I find myself just feet above the murky waters of my illness. I don't know if I have the strength to fly to a safe ledge, or if such a place even exists. And if I did, would it be enough? When you have spent your life trying to escape, when all you have known is the relentless attempt, what do you do next?
I don’t know how to soar like the other birds, but I can't return to that cage.
I am trapped between two worlds I don’t know how to exist in.
“You are not alone.”
This moment will pass.
“Right now, I am safe.”
Breathe.
“Right now, I am safe.”
Breathe.
I am grateful to be a part of the Writing 4 Resilience team. We’re a group of friends who are striving to build resilience in our local community with the goal of making Canberra suicide free by 2033. I would encourage you to check out their newsletters!
"In the haze of a tired mind, I wonder whether it would have been better to only know of the cage, than to be haunted by the sky and my recollection of freedom."
Fuck the cage