A bit of glitter: if you try to control me you won't ever know me

Are you good at giving up control? I didn't think I was. I'm not sure that I am. But maybe it's ok to learn from other people (or... just give up a liiiiiiittttttlllle bit).

Photo by Caleb Woods on Unsplash

What is control, anyway? It took me years to realise I wasn’t comfortable not being in control of myself, my surroundings, my circumstances, everything, really. I wanted to think of myself as a cool free spirit, wandering around, discovering myself and going where the fancy took me.

That was bullshit, though. You know what I really like? Lists. Nobody cool loves a list. But oh my god, I do. I like to plan things within an inch of their life. I never liked smoking weed or taking any other drugs, though I pretended I did, because I hated that feeling of not being in charge of my mind. Where are you going, mind? Come baaaaaaack (but don’t tell anyone you feel like that because then they might realise you’re not cool). The best thing about getting older was realising that other people knew I wasn’t cool. And they either liked me anyway, or they didn’t and I didn’t care, because I liked who I was. Someone not cool, who loves a list, who likes to plan, who wants to know when the museum opening hours are and what the special dish on the menu is that month and how much it costs to get the extra thing done at the spa and how much you should tip and where the best view of the sunset is from that island and what the best deal is for that thing you want to do and when you should book it and… you get the point. I am a planner.

However - and here we go again, me doing some musing, I can only apologise. I didn’t plan it. (JOKING of course I did. It’s literally on a list of things I wanted to write about). However: if there’s one thing that having a stupid old brain tumour and all the accompanying nonsense teaches you, it’s that not everything is within your control. Not that it ever was, if you interact with other human beings and the world, but it’s possible to give a good impression of someone who is in control, and who feels like they are. I felt I had control over my career, to a fair extent, anyway. I felt I had control over how I parented my child, and what kind of relationships I had with those around me. I was sure I was in control of how I looked (ignoring a certain, erm, softness around the edges where I ate a lot of cake - but I could have controlled that if I wanted, I was sure).

I was not. This is not news to anyone, I’m sure. It was barely news to me, though I still find myself shocked by it sometimes. Of course I’ve had to give up a lot of control - my brain literally rebelled against me and I had to let someone cut it open and take a bit out. Of course I can’t control how I look - I have to take lots of drugs which have changed my appearance and I hate that (and I hate how shallow it turns out I am - I didn’t think I’d care about that kind of thing but I still can’t look at myself in a mirror). I can’t control how my body is working, I can’t change how things are unfolding in my brain, I don’t have power over what’s happening.

But I do have some power over how I feel about it all, and that’s a new one on me. Is it new for you? Do you spend a lot of time thinking about it? I did for a while, before all this, as I began to realise that what I liked was knowing what was happening and being in charge of it all. And I grew comfortable with that. So this next step is new to me and I’m curious about how others deal with it.

My kid is having a birthday party today - bowling with friends. I organised part of it, came up with the idea with them, helped them send out invites, sorted out cash so they could play in the arcade. But I can’t be there. My husband is, just now, in a bowling alley, presumably hiding in a corner as six just-turned-thirteen-year-olds do whatever they do in these circumstances. He’s having to decide when to order the pizza for them, what drinks he should get them and where they should go, and how to distribute cash so they can take photos in a photobooth and be noisy and have fun and make sure their parents pick them up on time and that they all have a good time and all the things I feel I should be doing. You may be thinking, Jo, you have in fact dodged a bullet there. And you may well be right. But it’s potentially their last birthday party where I will be around and while I can’t pretend I’m not actually quite glad I don’t have to decide if they should get slush puppies or not, I’m also gut-wrenchingly sad that I’m not hiding in a corner too, wondering if we should have also ordered curly fries.

I’ve had to give in to the idea that my partner is now also my carer - he has to cut my toenails and change the sheets on my bed, and make me cups of tea and a million other things. And for a while I cried every time he did some of those things, and I still do sometimes, and I imagine I will do forever but not all the time. Because that’s exhausting for everyone. So maybe now it’s about giving up control. I keep the things I can (I like to be the one who orders from our local bakery. Because then I definitely get the doughnuts I want). I lose the things I can’t (I don’t think I’ll ever be able to play Just Dance again). I find the middle ground on those things I can sort of do (I can plan a trip really well, but it might be for the kid and my husband to go on without me).

Maybe I can’t go bowling, but maybe I can still show my kid how to have a good time. I think we all just have to try and have a good time.