In June of last year, I had just been discharged from hospital after a migraine attack that just would not stop. I was curled up in bed, still groggy from the IV, and watching as a friend of mine on zoom performed a drag number. It was a surreal, strange comfort that rose up in me as I watched them, pixels and glitter moving rhythmically to an 80s disco track. A year ago, this event would be the kind I would optimistically buy tickets to, and then spend the week leading up stressing myself into such a state about getting a migraine on the day that, inevitably, I would get a migraine and not be able to go. I hadn’t seen my friends in months because of the lockdown, but I also felt closer to their lives than I had in nearly a year.
I live with OCD, alongside the host of emotional highs and lows that come with having chronic pain. I have a condition that means something almost always hurts, and I have migraine attacks at least twice a week.
Us lot in Narrm hear a lot these days about the unprecedented, strange, and unrecognisable times we are living in right now. In many ways, these truisms calm us in the states of chaos and unpredictability this place finds itself in. At the same time, we see historical parallels carted out to chart our governments responses against previous tragedies and pandemics.
During the last two years as COVID-19 has made its way through our communities, and as my illness has become more pronounced, I would be lying to say I haven’t felt some kind of comfort (no matter how tainted it may be) in the lives of those around me being brought into step with my pace.
Many of us are struggling right now with the feeling that we are losing these years of our lives to lockdowns and restrictions. Time moves slowly, and all too quickly, leaving us in a place where it can be hard to predict what tomorrow looks like, let alone what next month may hold.
Yet things seem in many ways no slower and uncertain than they did for me in 2019. Many people with chronic pain’s time is spent waiting; for pain to subside, medications to kick in, to be able to keep food down again. Hours collapse into a tableau of cold tiles, warm wash cloths, panadol fizzing into water. In these moments, time changes to something we push through to reach the other side. We are well versed in holding onto the hope that things will improve.
The summer of 2019 I spent watching beachside Instagram stories while sheltering in a blacked-out room covered in frozen peas to try and reduce my head pain. This year, I see friends post stories of how hard they find it to get out of bed or the plans they thought they may be fulfilling at these moments. It is the first time in a long time that I find their content relatable.
I told my partner the other day that the last year has felt a bit like living the same Tuesday over and over. What is being felt collectively can be seen as a form of isolation and sadness often accessed by those with chronic illness, and a negotiation of pain usually felt by those who have an intimate relationship to it. Disabled people often inhabit a space where we live in symbiosis with doubt. This unknown is scary, if it hasn’t yet become your strange bedfellow.
The ill mind has found a different way of experiencing pleasure, and in turn, pain. I believe we have so honed our capacity for anticipatory pleasure that it can overcome the pleasure of the event itself. There were just a handful of events I had planned to attend in 2019 that I actually made it to. And yet I sucked every moment of joy from those moments in the waiting and planning. The best moments of my graduation: buying a suit with my girlfriend, Mums congratulations over text the morning of. The reality of the day: heat stroke, migraines, vomiting. It can be hard, in these times, to commit to planning anything. But I still find myself exercising the muscle of hoping, and feeling its rewards in the spring it puts in my step to plan for the best.
As ill people, many days are spent labouring over bowls of ready-made lunches and shuffling from bed to couch with heated throw in hand, left foot wavering and right foot dragging, and calling it an achievement. There is joy in this struggle and success being noted and even celebrated by the COVID-focused self-help social media.
And yes, that joy is tainted by pain. Pain in seeing friends and community members sick, in having disabled lives treated as disposable, in watching the failure of public health responses to protect those most vulnerable. Pain in seeing accommodations hard fought for in the workplace suddenly easily accessed by non-disabled peers. Pain in cancelled appointments, rescheduled sessions, and an inability to access the services that help us keep going. Pain in seeing community spaces move online and open up to welcome us, only to race back to their in-accessible formats as soon as they can. It is important to hold space to nurse this pain, and find what soothes this for each of us.
These days I watch as the lives of my disabled friends tick along with the same considered tone they always have; even the most chaotic of which I can see for what they are: management, survival, interdependence, care, kindness, strength, and a refusal to go quietly.
A post that helped me to re-conceptualise how I understand my use of time as a disabled person:
The Value of ‘Crip Time’: Discarding Notions of Productivity and Guilt, to Listen to the Rhythms of our Bodies