I’m near collapse. If the hospitals weren’t full of COVID-19 I’d have asked for admission. My tongue has been swollen for days now, cracked in the middle and ulcerated along the edges. My body is in so much pain it’s not always possible to walk or even type. My saliva is thick and foamy despite frequent drinking and crystal clear urine. My hands cramp. My eyes are dry and hurt.
The cognitive losses are likewise showing. I move in and out of having such a profound stutter I can barely speak or cannot speak at all. It’s getting harder to tell the difference between me and Jay except this is a tiny taste of their vulnerability and exhaustion.
Jay’s team is under horrific strain. Today we learned they were exposed to a confirmed COVID-19 person in the public hospital ED last weekend. They have been working around the clock high intensity shifts. No one has any money left for taxis and basic supplies for themselves at work, much less their own rent, student fees, medical costs, and food.
We have an agency ready to step in this week for a range of shifts, but we need disposible gowns, latex free gloves, and masks. Can anyone help me source these for Outer Western Sydney urgently?
Jay is presently stable. They have had several health crises to manage over the past few days, and we have discovered the agonising imperfection of emergency health care systems not designed with people with disabilities in mind. They remain at home with staff, on antibiotics. They are still in 9/10 pain from what we assume is an untreated spasticity crisis, but may also be underlying trauma such as fractures or bruised bones from various falls and poor handling. Without access to proper sedated scans we cannot be confident in the medical clearance they were given, given the severity of the pain.
Jay remains determined to survive, devoted to their family, distressed by the impact on the local staff, and afraid that somehow, some of this is in some way their fault for being complex or difficult or… I don’t know exactly what. Not normal? For daring to reach out while in unimaginable suffering, and now witnessing the sharing of that suffering in a smaller way with the people who heard the call and have come to help.
My wonderful long time friend Nick Jones created this artwork and meme for me today. It’s helping to help me going.
It is not easy to be the eye of the storm and the epicentre of such anguish. They bear it with dignity and humor and vulnerability. I want to meet them so badly. The state lines are all closed, I cannot do a midnight race to be by their side. How often we have thought they are dying in the past week, and I’m trapped interstate in frustration and despair.
Indulging hopeless fantasies of last minute Bruce Willis style rescues, careening into the ed of a local private hospital with a suitcase stuffed with the deposit we’d need, Jay making jokes about my sanity, me swearing like a sailor, the team providing remote support yelling the directions for the hospital to me over my headset, or crouched on the back of my stolen accessible taxi ambulance, holding Jay in their wheelchair as I hurtle around corners.
In this fantasy the denouement is a place of white and sterile peace, nurses slipping past a room in soundless shoes, a quiet efficient, reassuring hum of paperwork and handover and obs. Jay lays in bed, sleeping deeply and peacefully. The hospital is everything everyone dreams it can be, a safe haven with deep and calm acceptance of all the differences that block access to care for Jay now – trans, disability, non-traditional relationships, neurodivergent…
In my imagination, Jay’s team of support workers are all in their homes, safely sleeping the deep peaceful ready of front line crisis staff who are finally off call. I’m sitting next to Jay, not too close, but close enough to be able to see if their sleep turns to nightmares, to offer a hand to soothe.
On the other side of the bed is their partner Avery, ragged and unwell looking but no longer in unbearable constant agony. He holds Jay’s hand and sleeps awkwardly between chair and bed, face pressed into Jay’s arm, hands clasped around their hand. Magnolia is on the phone,
People step into the early morning light of the room. It’s the special support coordinator, the hospital CEO, and a high ranking police officer. They smile at me wryly and don’t speak. The police officer has an autistic non verbal child, and has briefed the other two. They step to once side and nod at me the way people are very old friends sometimes do when they meet again across crowded spaces. I nod back, get up, and walk out of the door with a heavy tread. My injuries and exhaustion have been tended to, the crisis is over, I’m no longer needed.
I walk slowly out of the hospital and into the dawn light. The sky is luminous, like a white pearl. My family are waiting for me bedside a fountain at the entrance to the hospital. Poppy runs to meet me and I have strength enough to lift her and twirl her around she giggles in delight and buries her face into my neck.
Rose comes slowly forward and holds me, eyes searching mine for confirmation it’s finally over. She breathes a deep sigh of relief. We hold each other, cheek to cheek. Lacing her fingers in mine to head home together, I can feel the unyielding firmness of her engagement ring between my fingers.
In my mind’s eye the next dreams start taking shape. We are standing beneath trees in the winter, isolated by COVID but connected by technology and community and love. We’re both well, we’ve been paid and tended to our health. We say our vows and kiss beneath a rainy sky and the massive trees. My heart catches fire.
How to Stand with Jay
- Boost our signal! Share this post. Tell someone about Jay. Use the hashtag #standwithjay If you are media, contact me for more details of the story, or watch this space.
- Learn about me: who am I, and why should you trust me?
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- Join us: bring love, help, make suggestions, take on tasks and all your cat pictures please!