Thursday, May 09, 2024

Three big things, two gold rings, one resolution.

The ingenues in their early days. The lobster, scarf, wall hanging and cardigan are still with us. The gin, we drank. 
People say that bad news comes in threes. I think a lot of things come in threes, but maybe that's because I strongly prefer odd numbers (especially 3, 7, 19 and 23, which are also all prime numbers) and three is the first odd number that, to my mind, counts as a proper number. 

Here are three things that have been various shades of news to me over the last couple of years, about which I have and have had varying degrees of control. Not all bad, but all big. 

1. In 2018, M was diagnosed with bladder cancer, via the traditional blood-in-piss route. Do not ignore blood in your piss, do not. I can remember where I was when he called me to tell me about the blood, and I remember that I knew that the little squirt of (I'm guessing) adrenaline that I experienced, in the Northern Quarter of Manchester while preparing to buy fancy glasses to appear more employable as I'd recently been made redundant as a result of the sexual abuse and exploitation scandal at NGO X, was significant. And I wasn't wrong. He had low stage, high grade cancer. The tumour was removed, and then he was treated in the recommended manner, though the treatment -- BCG into the bladder -- had to be stopped early, as he had extreme side effects. He had regular follow ups - first every three months, then every six, all through the pandemic. It almost went away, just a thing he did. But then, after nearly five years, it came back. Cancer that has come back is a different beast. 

He's doing ok. But that was the first big thing. 

2. We got together in 1998, so 2023 marked 25 years of whatever this is. We'd talked vaguely about celebrating, having a party... we never had a party when we left Oxford in 2012, we meant to, but we had a lot on. We assumed we'd return and do it, but then my mum got ill and everything tilted around. And then we were trying to settle into our new life up north. There were parties, but they weren't our parties, not like that. We should, you know, we kept saying, but life just kept getting harder (see above, and also the Ecoville Food Wars / Brexit / Trump / losing my job). I did organise a big thing for my 50th, and it was a joy, but it was also in early 2020, and we all know what happened after that. My dad barely made it through, many, many other people's loved ones did not, the government got worse, everything got more expensive, the climate slid further into chaos, we all got, as Pink Floyd say shorter of breath and one day closer to death. 

A school friend of mine -- not a close one, but we were Facebook friends and chatted occasionally -- died suddenly in June 2022. Her funeral was in Blackpool on a bright sunny day. On the way there we had to detour because of a fatal road accident. We ran into the church behind the coffin. Afterwards, I gave her mum a card that contained messages from all of the school friends I am still in touch with, as I was the only one who could make it to the service. It was every kind of sad. After we left, we drove to the Promenade and went to look at the function rooms at the Imperial Hotel. By the time we got home, I'd decided we were getting civilly partnered in the Washington Suite, which is basically a Victorian ballroom that has Seen Some Parties. It took M a little longer to come around to the idea of a major life event happening in Blackpool (he would have preferred a mystical woodland glade), but I have my ways. 

And we did. We invited somewhere around 100 of our favourite people and we layered our party onto the decades of parties and it was great. We had our rings made by a jewellery designer called Myia Bonner, and they are recycled rose and yellow gold, and I love them. There was food and drink and poetry and vows and live music and dancing and speeches and laughing and all around a lot of love in the room. I learnt that fake flowers and real candles do not mix, but I learnt a lot more about the joy of celebrating things while you can. 

3. I've written about menopausing before. That's not new. But over the years it's been happening to me I've become increasingly aware of all of my senses, and not in a good way. Certain sounds especially, but also textures, tastes, smells and lighting that used to be mildly irritating have become almost overwhelming. I have found myself rocking, with my hands over my ears. I have found myself curled up in a ball under the duvet in the middle of the day. I have found myself unable to eat something too sweet, or too fatty, or too bready, or too anything, really. When M asks me what I want for dinner, I have become incredibly precise. I have given up underwired bras, most of my socks, anything that is remotely itchy. And occasionally, I have found myself shutting down. I've always had what I call Full Pyjama Days, but these are a bit different. I simply can't do anything for a while. 

At the same time, I'm still attracting the kind of feedback that makes me want to burn things to the ground. People read me as rude when I'm trying to be clear. Or assume I haven't done my research (I have almost always done my research) and tell me stuff that I have known for literally decades, that is so integral to my thinking that I don't bother to mention it. "I think you might have misunderstood..." is something I hear a lot, especially from men. No. I understand, I just think you're categorically wrong.

Long story short, I went to the GP. She looked tired. I felt bad, I wasn't ill. I think I might be autistic, I said. Well, she said, what makes you think that? I gave her the story. Honestly, she said, I'm surprised this is only coming up for you now, but I don't know very much about it. So we'll do a referral. 

I was grateful -- GPs can be amazing, but they can also not take you seriously. I've been very lucky, on the whole, but my Significant Ex had abdominal pain dismissed in his mid 20s and ended up with an explosive gall bladder. And he's posh as all get out. 

Anyway, the first step was a one page screening assessment that they sent me in the post. I read it and it *had the answers* - it was actually designed to be asked by a practitioner. But I did it myself without cheating, and then I asked M how he would rate me. He only disagreed with me on one statement, which was basically "I collect lots of weird stuff" yes/no. But the stuff I collect isn't weird, I protested, and he rolled his eyes and gestured at the train tickets, the basket of wine corks, the Encona bottles, the drawer of veg box string and the tower of tuna cans. 

You've got a piano!! I said. 

But kids, it doesn't work like that. I passed/failed the assessment (depending on your perspective) and then I waited for my appointment with a psychologist. This took about nine months, which I gather is pretty good. When they got in touch, they said they wanted to speak with a parent. But I'm 53, I said. It's important to know what you were like as a child, they said. 

So I did ask my dad a few questions (he wasn't well at the time and he was nearly 80 ffs) and it was actually hilarious. "Well, you could read and write before you went to school, we only really sent you because we thought it might help you socialise. But it didn't." 

My limited memories of primary school really are "what is the point of this, I could be reading books", except for the fact that the food was excellent. God love my mother, but she was not a great cook, and those dinner ladies and their chips, and their carrot and swede mash, and their beefy sausages, and their chocolate sponge and peppermint custard: they made it all worthwhile. Chicken supreme, Manchester tart, mince crumble, pickled red cabbage, I loved almost everything that came out of that kitchen (except the roast parsnips). I also loved the parquet floor and the curtains in the gym / assembly hall / dining room, which were *exquisitely* 1970s, but I hated pretty much all the rest of it. A tiny example: I was cast as Snow White in the school play because I had the correct colouring, but I was so terrible an actor that by the time it was staged I only had two words left (a yes and a no), which I delivered with such vehemence the audience laughed, and it wasn't supposed to be funny. 

So with hindsight, maybe the signs were there, but no one was looking. 

But in 2023, they were slightly better equipped, and I guess I was doing the looking myself. And it turns out that yes, I am, by current diagnostic criteria, an autistic person. And with only a modicum of deeper research, it transpires that autistic girls with "low support needs" (who can essentially function independently if idiosyncratically) just pass as oddballs for years and figure that everyone else is better at normal life than they are (but don't care that much) until BAM!! hello menopause! The gift that keeps on giving! 

I'm glad I sought a diagnosis and I'm glad I've got one. A whoooole lot of things make more sense now. It's weird to see yourself as someone with a disorder, or even a disability, especially if you've secretly thought it's almost everyone else who's batshit. But then you look at the things you have tried and failed at over and over again, and the assumptions people have made, and the questions no one has ever asked, and the endless fucking battle to be seen, heard and taken seriously even as a middle class white woman. 

And it's kinda heartbreaking: not so much for myself now -- knowledge is power, mofos -- but for my younger self. She was so comprehensively thwarted, so many times, for reasons she did not understand. She was fucked over by people she trusted because she took things at face value. She was so often playing a different game, and didn't know the rules of everyone else's. 

But she's working on that, the grief. It's a thing, apparently. She's getting some help with that. She's going to be fine. 

All of this to say, though, I arrived in 2024 with a new prescription in my life glasses, man. There are some things that I started to write but stopped because I thought well... does this still hold? Am I still making sense? Where I'm at four months in is that I think I've never made more sense. To myself, anyway. And this is where I get to say my stuff, so. 

That's the resolution: to speak my mind. I always kind of have, but now I think it's even more important. 

joella
 

2 comments:

Anonymous said...

Mainly, Jo, I think I love you ❤️❤️❤️

cleanskies said...

Great to hear from you ((((hugs))))