Still alive – the best news I wake every morning.
Still alone in the house.
Well, not Alone alone. No support workers. Butter* remains faithful and devoted. The neighbour who originally found them is still dropping in to check on them. The cats sleep on them.
This was their blog post recently:
I’m tired. Depression comes and goes in waves. Right now I’m lying in bed, on warm fluffy sheets, under a weighted blanket, with one of my best friend’s puppies. I really really get self care.
Every day I check Jay is alive, boil my kettle, prepare breakfast and morning tea and start work.
I resource myself in every possible way to give me strength. Friends hold the space with me. It’s a sprint, and then a marathon. I borrow friend’s dogs and sensory aids, call people over who sleep in the home with me when I can’t speak or move my arms anymore. I have vast, beautiful, devoted networks I’ve spent years building and learning how to let love me. They – you – send love, money, good wishes, funny videos, clever suggestions, strength, compassion, sadness, horror. I bear witness and you bear witness with me. It’s a small miracle that we can bear it, this one more atrocity in a sea of atrocities.
I think it’s partly because it’s more than a sad story. Jay isn’t just a victim and I some Erin Brockovitch hero. I’m dealing with disability and stigma myself. Jay sometimes comforts me, shows me their vast strength and patience. We are more than the roles given to us, and less.
Everyone keeps advising me on self care as if it will erase the distress, the sacrifices of crisis work and witness bearing. I found it curious that we love a marathon in sports, or endurance for the sake of testing the limits of the human body against some vast feat: a mountain or ocean or flight to the moon. We understand sacrifices in those contexts, for those worthy goals. But in community services? I’m viewed with alarm and suspicion. My weariness and emotions count against my credibility. We understand adult nappies to train for space but are confused and concerned by me sitting at my computer for so long I’ve got sores on my butt and I can’t move my hands.
What a strange world that mountains are worth conquering and stars reaching for and races are for winning, but for humans, for our own precious people we preach instead a balanced life. I have lost count of how many times I’ve been advised to abandon Jay to the public health, or death, or both. As is always the case with secret tragedy I’ve been hearing stories of devastation and lots from others who have been here. Their takes of death and abandonment, broken heartenedness and reaching the end of all their efforts to find only failure and loss.
We talk about burnout instead of community, and sustainability instead of resources. Jay could have died the other day for the simple lack of a urine test and antibiotics. It took a super human effort to provide them. I don’t regret it. Even if it’s not enough in the long run, I don’t regret it. Not any of it. And I won’t look away.
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?
- Donate to us: all funds will go to Jay and the team, not me or my business
- Join us: bring love, help, make suggestions, take on tasks and all your cat pictures please!