Article
When the two lines showed up on the RAT in late December I was equally astounded that it had finally got me, and that I’d held out so long. Especially with my children in kindergarten and primary school, me being the only masked person in those settings apart from the principal. I was first met with a roaring fury followed by an almost catatonic drop. It was acceptance mixed with the realisation that I could stop running. There was a tiny bit of relief in there to be free of hypervigilance for the first time in half a decade.
Part of me knew it was coming from the moment that first weird sneeze sent a shockwave through my sinuses, and that I needed to manage my reaction very carefully. For two weeks through the funky mouthed healing antiviral stage and mammoth amounts of hydration and rest my body required, I kept fear at bay. Something about the fortnight mark felt significant. Suppressing catastrophic thinking born from lived experience was too big a tidal wave to hold back. I was deeply fatigued and needed to let it out, unable to avoid it any longer.
Carefully, slowly, I uttered the words out loud to my partner. What if this is my new baseline?
I’m so scared that everything will end. All of my joy and capacity, the projects I’m invested in, relationships, safety, sense of self, presence in the world. The essential pause in worry from a positive test result to focus wholly on rest, then the exhaling of fears. This was the right progression for me. It was a clearing of my cache and made space for what needed to happen next.
I’m not the best person at sitting still, and twenty years of energy limiting disability has given me clear strategies for pacing and managing all aspects of life. Prioritising, resting, playing, dreaming. Those metrics didn’t apply to the heaviness of the fatigue and brain fog wreaking havoc in my system now. My family went on our summer holiday to a holiday rental with a pool without me, and I stayed home for a low stimulus rest time. We all wanted me to have the best shot at recovery.
It was an endless mental seesaw between needing to be informed and staying hopeful. Losing my baseline was not a foregone conclusion, nor was it out of the question. The horrifying prospect of the work ahead of me was being present in the moment and getting through one minute at a time. Understanding how to rest was ludicrously difficult. I felt panicked at the “lost” time. But I was still here and a person, still loved and loving, my commercial output slowed but in an essential fallow season.
Friends sent voice memos, care packages, memes, empathy, ticketed links to online comedy shows, heartwarming stories from their lives to distract and soothe, videos of their pets sending love. I found a new safe food and ate a thousand quiches after my friend Liz sent groceries to support us.
My mum sent packages full of cross stitch kits which I lined up in a gleaming promise of future activity. After five days I had the capacity to Facetime for a few minutes. Then made sure to rest again.
The Long Covid community and disabled community gave me information to understand what was happening and what to look out for. I sat in my recliner and read sometimes, drank a lot of water and juice and hydralite, put the tv on, spent afternoons in bed, and when I could manage it I shuffled my piles of things into a different order to soothe my mind.
The highlight was over the course of several days bringing the tubs of things in my laundry storage area to the dining table and implementing a new system. Printing labels and laminating them to stick on the tubs with velcro stickers. All the lightbulbs, torches and matches now live in the Illumination tub, something that floods my nervous system with dopamine every time I walk into the laundry.
Every day I mused about the things I’d like to do, and when I managed to shower - full stop - I aggressively high fived myself for doing a great job of resting. I ordered a costly but worth it home PCR test from Europe after being paid for a corporate gig, dreaming of feeling the relief of knowing one way or another if I could be safe for a few hours with other people. I carefully dispensed mutual aid funds and paid some of a hefty tax bill with the rest.
Once I was testing negative for two consecutive days, a man came to collect a spare mattress we were giving away. My wife asked him at the door if he’d like a mask as we’d had two family members with covid the week before. “Nah, I think I had it last week,” he replied. This says it all, really.
How the average person eschews care for others, even when literally being presented with a barrier to risk.
Had he tested to make sure he was negative from the covid he thought he had?
I’ve wondered how getting Covid would impact my actions and the ways I relate to others in the aftermath. At this stage, 3.5 weeks in, it looks like Long Covid isn’t part of my story, but that doesn’t mean I don’t care about people for whom it is. I’m more committed to protecting myself and others than I was before, if that’s even possible. I’m not here to judge anyone. We don’t know what we don’t know, and for many people finding out the lack of safety net for those disabled by Covid has been harrowing and heartbreaking. For others, it’s something for everyone else to worry about.
When I say “take care” I mean it to the depths of my soul. Take care of self, of others, of community and especially the most vulnerable and marginalised people. There is no post Covid. It’s still here and it still harms people. Even though it can feel annoying or boring, that doesn't mean it’s over and I am dismayed and affronted when people act like it is.