The prevailing belief in kiwi culture is that if you just try hard enough, you’ll succeed. Try, try, and try again, right? Yeah. It’s a nice idea. But it’s not true, and it’s used to punish people way more often than it is to encourage them.
I should know, I punish myself regularly. If I only tried harder, I tell myself, I could get well. If I only tried harder, I could work fulltime. If I only tried harder, I could own a house and have a baby and visit the Galapagos Islands, preferably with David Attenborough as a personal guide.
It doesn’t matter how improbable any of these things are – if they are or have been at all a possibility that I can wield against myself with the devastating accuracy only one who knows you truly well has – then I will. You’d think it were my favourite pastime, considering the headspace I give it. Just wacking round in my brainbushes, taking out valuable veges and pretty flowers at will.
I’m getting out of hand. You get the point.
When someone is very sick – like, say, I am very sick – it’s not possible to think oneself well. No matter how many wellness gurus might try to tell you otherwise. Thinking alone does not a healthy person make.
In fact, the more I try to force myself to behave like a healthy person; the worse I get. I’m not one.Trying to hold myself to the same standards is counterintuitive. It’s the same as the fact I’m not a marathon runner. Why the hell would I try to keep up with one? I’m only going to do myself an injury.
That doesn’t mean I’m not on the same course, or that I don’t look ahead with the same focus. I do. I want to jump all the same hurdles, I want to cross all the same finish lines. I just have to do that at my pace.
I know this lesson, but it’s one I learn over and over. There’s a part of me that steadfastly refuses to believe this is my life. That thinks I can’t possibly actually have these illnesses. Any moment now, I’ll wake up, and it will have all been a horrific dream, and I’ll jump out of bed and go to work. (Amazing, how your priorities change. God, I’d love to be able to go to work).
For the past few years, in order to deal with my diagnosis, I’ve been telling myself that things that happen to other people with my illness, like their body changing irrevocably, won’t happen to me.
It’s important to visualize a healthy future. But, just in the past few months, I’ve had to accept that some of these things are happening to me. Now is the first time I’ve really been able to see them.
Last week, inspired by Home and Away, I decided to write a bucket list. I got about two things in and gave up. All I could think was ‘I’m never going to be able to do any of these things, so what’s the point?’
I don’t want to feel or act that way. I have a poster on my wall that says ‘Your current situation is not your final destination,’ and I remind myself of that often. Plenty of people with my illnesses go into remission, or even as far as actual recovery. There’s no reason that can’t happen for me.
But it can be hard to think positively when the nature of my disease has really started to take its toll.
The nature of my disease is that my symptoms are never-ending and the ways they restrict me are immense. I cannot get near most of the things most healthy people have – full-time job, a house, a proper social life, a family. I’m not saying goodbye forever to those dreams, but I’m not getting younger. Turning 30 was a pretty intense thing for me. Not only did it mark five years of being sick, it was a new decade, and a time when younger me thought I would have had all those things above sorted out. And I’m not even close.
The reality of my disease is, I don’t have a choice about the drugs. Are the side effects awful? Yes. Do I dread taking all of them? Yes. Can I stop? No. Because I need to manage the disease. And even though it feels like they’re not working enough, these drugs make me feel like I’m trying, like I can hope.
The reality of my disease is, I can try as hard as I goddamn want, but it just. Will. Not. Budge. Never have I felt more powerless. I have tried everything I can, for the illnesses, the meds, the side effects. And I’m getting nowhere.
It’s a weird thing, to not be in control of your own body. I feel like the illness is a translucent imprint laid over the top of me, like overhead projector film. You can still sort of see me through it, but I’m obscured. When I look in the mirror, I don’t recognise myself anymore. The illness manifested as pain inside my body a long time ago, but it’s taken this long, and until my current medications, for it to show on the outside. I’m losing my hair. What’s left is dull and lifeless, and so is my skin. This is probably because of the chemotherapy but the other drugs also list these side effects, so who knows. I’ve put on weight, after rapidly losing it when I first got ill. I’m aware that my appearance should probably be the least of my worries – but let’s be real, it’s not. I want to look in the mirror and not be horrified. I want to look in the mirror and not worry about the curvature of my spine, and if it means any of my bones are fusing. I want to look in the mirror and shrug, even, and just be like ‘Yup, that’s what I look like, and I’m ok with it.’
Unfortunately, I don’t. I look in the mirror and get reminded that I’m a sick woman. That my body is changing, and there’s so very little I can do about that, no matter how many times I go to the doctor or the hairdresser or the pharmacist or a beauty therapist or a clothes store. The feminist in me is saying ‘Who gives a shit? Why do you have to be beautiful so others can consume you?’
The woman in me who has been indoctrinated in external beauty her entire life whispers ‘I give a shit.’
We’re taught that we have complete control over our bodies and our lives. That we can force them to do anything, if we just try hard enough. And that we should, because that will make us somehow morally superior.
It’s untrue, and it’s unhelpful.
It’d be easy for me to be bitter, and trust me, sometimes I am. But practicing acceptance of my reality is a lot more powerful. That doesn’t mean I stop hoping, or trying, or having faith that things will get better. I don’t. But I also try my best not to beat myself up about things I can’t change.
We might be on the same race course. But everyone’s journey is radically different. Having an understanding of that not only puts less pressure on us all – it allows us to appreciate it.