We've Got This

Or do we? I do not.

Sometimes I don’t think I’ve got this. That was the first sentence I ever had published in a book. As the aftermath of school holidays has been flowing through my system, it’s never felt more true.

Parenting gets so much easier and more challenging in different ways with every passing year. Our eldest child is eight now, and last night we ate the meal that I prepared for Mrs Peach and I one of the nights she was labouring. She needed something easy to digest, tasty enough to rouse joy and with enough nutrients to make this life feel possible. It’s a simple thing, tofu in a fragrant tomato sauce with coconut lime rice - one we often make for others when they’re going through it. It’s now the traditional “Merman Liz is visiting!” meal as well.

This time my wife prepared it for us. I’d spent the afternoon in bed, the first day I hadn’t been under the thick mud of painkillers this week.

It feels to me as though my capacity has shrunk with age. It could be stress (the horrors), or the nature of disability and chronic illness. It’s become quite noticeable. Working (writing) hours are just for the morning now. After lunch I rest until school pickup, and even then it’s not definite that I’ll manage the basic tasks that make up the post pickup parenting shift.

I make headway with little walks. Most recently I’d worked up to walking to the corner and back, then came down with a chest infection the first week of the school holidays. I’m still clawing my way out of that.

When things go wrong with my lungs, my body locks up around my neck, ribs and lower back. My dodgy ankle follows suit. For the last couple of weeks the right side of my body created ricocheting pain loops that crushed me into cranky soup. I’ve felt terse and barely able to cope with anything beyond breathing. Breathing was painful for so many days in a row.

And yet, in there a joyful thing - our big kid turned eight. EIGHT! Can you imagine?! Wondrous beloved dream come true. Animal whisperer, omelette making, lego building magic that they are. All the legs of an octopus.

I’d put aside income from a couple of bylines to give them a brilliant birthday celebration of their choosing. A night at the hotel at Chadstone including fancy buffet breakfast, rooftop pool and Legoland. Sushi train and general merriment and adventure. It was extravagant but I wanted to make up for all that I am not.

The overnight outing as a family sent me to bed for a couple of days. Days to ruminate and feel desperately alone and furious. Am I a failure because I can’t withstand what my family likes to do in celebration? Because I’ve hit my limit and can’t cope with additional pain and fatigue, can’t push through it or overcome it or ignore it or put it off.

The boredom of widespread pain is maddening. Writing, reading, stitching are all out of reach. Taking in story via audiobook also impossible - my brain can’t follow the story without visual cues. So I watch stories of other people living fictitious lives on the iPad and feel my eyes melting and straining. I enjoy watching active, ambitious, beautiful people. At the same time I can feel bitter rage lapping at my island - the edges around my bed. It shifts most things into a harsh perspective.

A plush duck in a rumpled bed in orange light emanating from a salt lamp in a dark room.

Our 5yo left their most precious toy in my bed, a loving gesture that lets me know how missed I am when I become a cave dwelling lump.

In my ruminating cave of salty meh, I mentioned to superpal Jess how I felt trapped in the pain loop. That I’d never feel anything else. And here is why it’s a good idea to have autistic friends: we notice patterns. We bank it as data.

Superpal Jess: Would you like me to reassure you you will be ok based on the evidence I have collected? Or just validate your never ending pain? I can do both!

JP: Reassure evidence please.

I have collected data over the 18months I've known you that has brought me to the following understandings about you, my dear friend-and-hero:

1. You have a beautifully strong sense of duty to your family and children and a sense of responsibility that you all Have a Very Nice Time on auspicious occasions.

2. These occasions often fall at the end of the school holidays after you've spent long weeks at home trying to keep on top of parenting, house keeping etc.

3. The Very Nice Time is often highly stimulating and not that accommodating of your disabilities. It often involves lots of driving, transitions, high sensory environments, extended time in close proximity with people

4. You crash afterwards and experience lots of pain and fatigue. This is accompanied by guilt that you can't tend to your familial responsibilities and dysregulation due to not being able to engage in comforting routines and joy-inducing activities.

From my studies I've observed it takes about 4-5 days for you to experience the worst of the pain

And about 7-14 days for you to answer the question "how feel?" With something like "much better!"

I'm not great with numbers so take those with a grain of salt

Lol numbers. What even are they.

Exactly. But that is for sure the pattern of how these things go in my experience. And I wouldn't wish your crashes on anyone and I'm sorry you must endure them. But I know you will be ok.

I will return to functional!

You will!

I did NOT know that before. I just assumed I’ve fucked it up. And this is it.

Not at all.

Holy shit. What a relief!

And you will be able to recognise more about what caused the crash. You always learn something.

I am extremely blown away by this. Thank you for seeing me and knowing my patterns.

END SCENE

Here’s the thing: when basic building blocks that keep my motor revving in an average day are removed or shuffled around, it’s fairly likely I’ll have a reaction of some kind. My shoulder was already agony before we left for the bday celebrations. We add in the factors wisely listed by SPJ of: highly stimulating, much driving (even in passenger), heaps of transitions, time spent in close proximity to others, and me being so overwhelmed I failed to have my loops or any bubbly water to drink. I hadn’t made it to the pharmacy to get more codeine and was rationing my last pill for the drive home.

Willfully ignoring all of this data is a form of internalised ableism. I assume I can shapeshift into being a different person with a different body because it’s a special day and that being more important than reality will roll the proverbial stone away to find magic able bodied Jesus/Jasper dancing on a table prior to flipping it.

The good thing is that even when I don’t feel like I’ve got this, my friends have got me. They’ve noticed things I haven’t. They let me know I’m someone that cares deeply about the experience of my family and this makes me the opposite of a failure.

What I find confusing is finding a way to celebrate and be present in a way that’s safe for me to be part of. Which also doesn’t result in my kids feeling abandoned or my partner having the lion’s share of the labour at all times.

Some juicy things of late

Stacey Stokes

wrote a fantastic Substack about JK Loser and the battle for Being The Most Oppressed Cis Woman of All Time.

Sarah Firth shared a fascinating perspective about Aphantasia (where you don’t form visual images in your mind, essentially having a "blind mind's eye").

Being very high brow I’ve been doing deep research into the breakup of Deborra-Lee Furness and Hugh Jackman. With confirmation gleaned from Cosmopolitan that Jackman was now dating Sutton Foster, I had to watch her in Younger from start to finish to see if there were any clues about the pending shift in global circumstances.

Younger is the story of Liza (Foster), a divorcee in her thirties who can’t get work in publishing after taking time out from her career to raise her daughter, now 18 and off to college. She removes all digital footprint with the help of her excellent lesbian friend Maggie and reimagines herself as a 26 year old, instantly getting a job as an intern. Hilarity ensues, obviously. The show kicked off in 2015 and had seven seasons, concluding in 2021.

Deb and Hugh divorced in 2023, following the requisite period of separation. Also overlapping this time was Hugh and Sutton co-starring in the broadway production of The Music Man. Anyway, I don’t need to make you a Venn Diagram about it, read the Cosmo article linked above. I watched all seven series once and then went right back to the start to rewatch it all in case I missed anything. I have nothing to add to the dialogue, but sometimes you need to follow a flight of fancy, ya know? We like fun in an apocalypse.

The Bold Type

Following Younger, I felt it necessary to continue with a go get em career gals show, and due to getting a haircut recently I had The Bold Type in my mind (Rachel and I always talk about it). I think this is my fourth rewatch. My god, it’s a balm. There are endless moments that pass the Bechdel test. Failure demonstrably being a good thing in multiple hindsights. Ambition and drive being celebrated. Creativity and intelligence being possible in multiple realms. Wasn’t the real winner the friends we made along the way?

The three main characters from The Bold Type - Kat (a brown skinned femme queer legend with long curly hair in a strappy black dress with white, purple, yellow and blue patterns on the top half), Sutton (a tall skinny white lady wearing a taffeta frilly frock with gold and black polka dots) and Jane (a short white thin woman in a brown silky off the shoulder dress with long brown hair). They’re all embracing and smiling.

Started off nice but Yikes

Celebrity Family Feud: RuPaul’s Drag Race vs The Bold Type seemed the obvious choice to leap into when mourning the end of my time with Sutton, Kat and Jane. I’ve never watched Drag Rage but have learned many phrases about serving, giving, mother, etc from my younger (see what I did there) friends. Thank you, homosexual role models born in the 90s. You know who you are.

This show just reminded me that there’s a horrifying world outside my beautiful glimmering bubble where everyone is safe and expressively gifted. The host Steve Harvey is a 68 year old man, and was demonstrably nervous when interacting with two fierce queens. He made references to his friends taking issue with him interacting with people in drag, and also with original Queer Eye team member Carson Kressley who would do such flaming things as going in for a hug. Steve would respond with a handshake, and spat out the phrase “politically correct” way too many times. It was just gross and reminded me that people are literally afraid of anything outside of their wilfully narrow world view, regardless of what they’re actually facing.

All the guests politely laughed along with his discomfort at being in their terrifying presence, with desperate mentions of all having fun coming thick and fast from glassy masked smiles. The power dynamics were awful. I hate it here. Bubble forever.

Ok, that’s all from me. The Federal election is looming. I wrote a thing about how Dutton and Albo both hate disabled children, you can read it here. No matter what happens, the bubble is real and we can find it in one another.