to try to remind yourself that there are good things, is work

I had to withdraw from university today. I ugly cried on the loo afterwards. I wanted to start law, but I don’t know if this will happen now.

I can’t continue studying anymore. My body hurts all the time. I am extremely tired, more tired than when I was breastfeeding a non-sleeping allergy babe, and that is saying something. I have wicked brain fog that comes and goes very erratically.

Sometimes I have a lot of capacity, and then sometimes I cannot warm up for anything, and I am under four blankets with the heater on, and my lips are blue, my blood pressure tanks and I can’t stop shaking or feeling like nausea is all I have left to feel. Then I sleep. Eat something. And rally. These bouts last for a couple of hours at a time. They are scary. I can hear my heart slowing down while I lay there shaking, wondering what the fuck is happening. I worry that during one, I won’t get up again.

I can’t study. When I’m not doing the above, I’m parenting or chasing doctors and trying to find my way through an incredibly frustrating and overwhelming medical system that doesn’t make any sense, is disjointed as all hell, and has massive cracks anyone could fall through at a mom’s notice. Nobody seems to talk to each other. If I wasn’t diligent, I could see how I could easily get even sicker with no help.

That diligence takes a lot of energy.

I have decided that if I have to choose what I expend my very limited energy on, it will be on my child, my care, and after that - advocacy. Whatever spoons I have remaining after caring for him and me, I want to spend developing The ANPA.

The future feels like a chasm right now. I feel like I am standing staring into it and I don’t know anything past my feet. Bec used to call this mood vantablack. Vantablack is a colour in chemical engineering of a colour coating so black that there is no reflection of light whatsoever. The abyss is like this.

I don’t understand how she died in August, and I am now full of lumps and disrupted cells so soon afterwards. I don’t understand how that works. I know life is random but what the fuck, universe.

The death toll in Gaza now stands at nearly 35,000; and 77,000 injured. The Wall Street Journal report: authorities in Gaza say they have now lost count of the dead.

Israel is a few days away from a ground assault on Rafah, where over a million Palestinian people are sheltering. The likely result is that they will be driven out of their land and into Jordan and Egypt. If this is anything like the Nakba and 1948, it is unlikely they will ever come home. Israel has been explicit about their plans to take their land, for a long time. I am unsure why we don’t believe them.

I think about them all a lot when I am laying panicked, still, with my lips turning blue. Rubbing my hands together to try to get warm. I think about the children whose sleep every night is broken with bombs and the sound of the constant aerial droning of the unmanned plane. I think of the mothers who wake to find their children dead next to them. I think of the children who have no surviving family. Where will they go? Who will care for them? What will happen to them?

I think of the people who have allowed this truth to become “complicated”; I hold them in contempt. Their moral weakness is ugly. There is nothing complicated about genocide. I have very little time for people without backbone.

I have none for people who manipulate the truth. As an Autistic person, there is little I care more for, than truth.

———

My GP says that non-Hodgkins has been ruled out. I relax. Then Westmead call me and urge me to make sure I am connected with a doctor and make a strong point of ensuring I am under a doctor's care. They have seen my CT and had access to my results. What do they know that I don’t know? The abyss takes me again. Fuck this. Fuck this. I don’t want to die.

And then I gaslight myself endlessly, almost to the point where I stop making calls to chase down care. I sit frozen on the edge of the bed, second-guessing myself. Maybe I’m not that sick. Maybe I’m just a drama queen. Maybe I’m a time waster. But then why do Westmead keep calling and pushing their thumb in my back?

I cry because all of it is so hard.

I feel really, really glad to be largely out of the loop of social media. I couldn't imagine trying to navigate that cesspit right now. I have posted vaguely on Facebook a couple of times. I closed the app and deleted it again. The whole circus makes me feel sick now. I want nothing to do with any of it any more. I thought that was community, and maybe there is still some of that left. But I no longer feel able to trust ND community spaces online. I do trust the ND community, which is real and present in my everyday life.

I follow up with a client, a young person I am supporting. This work brings me a lot of pleasure at the moment. So, too, do finishing notes for the NSW Legislative Inquiry. It is painstaking and hard to focus, but it is getting done. Slowly.

I still go to meetings, and I am focused on developing slow and careful relationships offline with a lot of backbone to them. I am no longer interested in getting work done by knowing many people. I am interested in knowing some people well.

I collect my child from Assisted Transport. On the way back into the house, I noticed a package from my friends Cassie, Sophie, and Ambly. Inside is a beautiful array of teas, shower nicenesses, chocolate, a journal, and a card full of love. These are friends I have known since 2009. A long time. Their card makes me cry; it’s so gentle and loving.

I get an email from the Department of Education, reinstating their fucked up ‘Communication Plan’. I write back to them, declining and pointing out that I never consented to the first one. I am so tired of the hostility from the Department of Education towards Disabled parents and children. I am so tired of the hostility toward us from the Fed. It’s a long-term waiting game: de-segregation is coming, and we will wait for the dinosaurs to die out. There are more of us than them. And a lot of us now are lawyers, politicians, teachers ourselves.

I’m not sure they know that, though. There seems to be a bit of deer in headlights energy from both. I think they are all realising, right now, in real-time, that the children they all bullied in primary school grew up to be adults with self-awareness and the power and ability to self-advocate, learn the law, and stand their ground. The weird bitches grew up and learned how to document.

We have afternoon tea. I keep the house quiet for him; I have made a nest for him to come home with his favourite blanket, hot water bottle, snacks, and computer. School exhausts him. He needs total rest to recover.

The days are a bit long at the moment. Tomorrow, if it is a good day, I will take my hazard perception test. I will get my license by hook or by crook. I refuse to have this stolen from me - I have worked too hard to learn to drive. There are times I have energy and feel okay, and in those times, I want to drive. My goals matter to me a lot.

We are cruising toward bedtime and the best part of the day - is when we snuggle up and read the book series we are following together (Percy Jackson and the Olympians). It is a bit dark, but he is a kid who likes dark themes and isn’t afraid of “spooky stuff”.

Plus, we talk about it: a scene where a shadow moves across a window rattles us both, and we discuss all the things it could be rather than marinate in fear. It feels better to outline options rather than drown in unknowns. Always.

But, of course, that is a little harder with my unreliable body.

I am looking forward to sleep. I go to bed at 8pm most nights now. It feels very odd, after a lifetime of ADHDer bedtimes (2am, 3am).

I do sometimes wonder if I have just flogged my body too much. If I have done this to myself. Those times are a bit miserable. x