Magnolia Speaks

Jay is still alive today. Alone in the house and crying. We are all trying to comfort them online. But alone.

Magnolia* is Jay’s overseas partner. They have gone through hell and back watching this from far away, working on documents to send to doctors about what has happened and what is needed, talking to the staff about how to manage the food and caring and what plurality means and reminding people about pronouns and trying to keep Jay safe.

Magnolia offered to write something we could share and yesterday their words were hopeful. Then last night we were forced to abandon Jay in their home once again and the bitterness and fear is horrible. Here’s what they want to share:

Magnolia Speaks: 15/4/2020

I’ve been writing it over and over again in my head, trying to find a way to tell you what this is like. Trying to find a way to say this is hell but those words are so overused I don’t think you’ll understand.

The last post I wrote was hopeful, but it’s hard right now to find the hope. I didn’t know what we had could unravel so quickly, but here we are. Once again I am watching, an ocean away, while my love is left alone, no help, pain mounting and sickness spiraling out of control. We all keep going onto the discord channel, family giving comfort, workers giving their free unpaid time to gently ask them, can you drink, did you take your meds, are you okay?

It’s a stupid question ‘are you okay?’ but we keep asking it. If okay means safe and stable, they’re not okay. But every time they answer there’s the one little glimmer of hope: not dead yet. Not dead yet. Still here. Still here.
“I’ll find a way to stay alive,” they promised us. I’ve watched them stay alive against all odds for a long time, and I believe in them more than I believe in most anyone. But they can’t go on forever with nothing. Even Jay acknowledges that.

Despite despair, despite the mounting challenges, Jay’s family is still here and we’re not going anywhere. This team is still here, and they’re all fighting for the same thing — to hear Jay’s voice and give them power in a world that wants to take everything from them. When hope is too weak to hold us up, we will move forward with the power of anger, the pure fire of our determination.

Please, if you’re reading this, please don’t give up. Keep fighting with us. Let’s make a fuss too big for the broken governmental systems to ignore, too big for the hospitals to wash away with a PR campaign, too loud to be drowned out by bureaucracy and polite dismissals.

Jay will keep fighting to stay alive,
and us?
We’re fighting to make something
worth staying alive for.

Magnolia
a digital artwork showing a white dog sleeping at the feet of a person in a wheelchair. The person is brightly rainbow coloured with punk mohawk hair and glasses. They are painting a landscape artwork on an easel.
Original artwork by Jay. Image description a digital artwork showing a white dog sleeping at the feet of a person in a wheelchair. The person is brightly rainbow coloured with punk mohawk hair and glasses. They are painting a landscape artwork on an easel.

How to Stand with Jay

If you’re still reading, this is the one they wrote yesterday, when we had a plan and things looked hopeful again. We ride the waves of hope and despair, nothing stays static for long for Jay.

Magnolia Speaks: 14/4/2020

This last week, almost every time I woke up it was to my phone ringing. Check your messages. Please come help. What do I do, I don’t know what to do, what do I do? I can’t take this any more.

I’m not a professional. I’m just a disabled parent scrabbling to prevent yet another bout of homelessness. I have no medical training or background in care giving. And yet, somehow, I am one of the precious pins that is holding the fragile structure of Jay’s survival together.

I’ve been watching the system fail Jay for a long time, cursing the ocean between us and all the people who couldn’t find an ounce of compassion. Someone so funny, so persistently kind and gentle and patient, someone full to the brim with passion and fascination and ideas, and these agencies look and see…nothing. They don’t care enough to try to understand.
But we’re changing that.

There are two parallel stories happening here, and it’s hard to tell them both at once. Because one of the stories — one that needs told not just for Jay’s sake, but for the sake of thousands of people like them who are being neglected and left for dead — is a bleak one. It’s the story of people who are discarded by society for their differences, whose value is ignored and denied. That story is a cry for help, a warning, and a call to action.

But the other story, the one that is in my heart right now, is a story of hope. I fell in love with Jay a long time ago, and now I am finally watching other people see what I see. Not Jay the crisis or Jay the case, Jay the person. Jay the artist, Jay the dog trainer, Jay the inventor and explorer, in curiosity and silliness and devotion. Jay who remembers a silly typo from three years ago, who rescues a starving little cat from under their porch, who gets a dream and digs in and fights the world until they get it.

This is why I’m honored to wake up at 3 am and struggle through ten channels of chat logs to try and avert a crisis. Why every time I get a call I thank the people who called me to come. Maybe I’m not the best person for this job, and I know this is an uphill fight, but Jay is worth every second. And maybe, between us, we can make an uncaring world sit up and pay attention.

We can help them see how lucky we are
to have someone like Jay in the world.

Magnolia

Jay’s Own Words

It was going well. Then it went downhill. Then it all caught on fire again. I’m so tired and heartbroken. They are at huge risk again. I am at huge risk. My team is at huge risk. The NDIS changed the plan again and now we are not getting paid for our time from this point. They’ve expressly forbidden my team from returning to the house because Jay may have COVID, which means my team are not covered by any kind of insurance if they disobey. They have been forced to stand down. We tried to get Jay into hospital before the last worker finished the last shift, but the ambulance was full of latex and Jay started reacting. It’s just so impossible to keep things on track.

I’ve showered. My mouth has stopped swelling – that’s rather nice – turns out it was an allergic reaction after all. I’m kind of numb, which is think is good at the moment. Safer for me. Apparently I’m being accused of kidnapping Jay. And of endangering their life by trying to get them into hospital. And of endangering their life by trying to get them out of hospital. And of endangering their life by trying to support them at home. And we asked for COVID testing we were told we were stupid. And now we’re told we’re wrong for not taking them to hospital to get it. It’s day 9 post exposure and their only symptom of possible COVID is a sore throat. The blood in their catheter scares me a whole lot more. I have to sleep, I just have to. I have to sleep and hope.

I’m tired of talking for Jay. They are eloquent and amazing. They don’t need me to talk for them, they need the communication device that’s going to take a month to get here, and for people to start treating them with respect.

They wrote a blog post about this situation on their blog and I have permission to share it. Go and see their own words.

Different not less by Jay

How to Stand with Jay