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About illness

Surviving what is, to become what will be

My life has been irrevocably changed by illness. I have to let go of what was, to deal with what is, and what will be.

I’ve started to realise that, even when I get better, I’m not going to be the same person I was before. It may sound simple, but it’s taken me a long time to accept that this isn’t just going to disappear. I’m not going to wake up one day and be the old me. I may never be able to work like I used to, have the active life I used to, and letting go of that is so hard, and so completely necessary. I feel like I need to really get it through to myself that I can’t just turn around and go back, in order to be really be able to embrace the learning I’m doing.

“Sometimes one must break with one’s past to embrace one’s future. It is never an easy thing to do. It is one of the distinguishing characteristics between survivors and victims. Letting go of what was, to survive what is.” – From Darkfever, embarrassingly one of my favourite books.

And boy, am I learning a lot. Not just about myself and my values and what I’m capable of, but about the world and other people and what actually matters, at the end of it all.

I’m trying to write this without it being clicheed and saccharine. It’s quite difficult to explain the changes in perception I’ve experienced without it becoming the equivalent of emotional white noise.

I found this quote written in my phone, I can’t remember where it can from.

“Exposing yourself to people, letting them know who you are – it changes your life.”

Illness makes you vulnerable. It exposes you, whether you like it or not. I chose to embrace that. I chose to use that as a tool to fight with, rather that something that was being forced on me. And yes, it has changed me.

Despite being told so repeatedly, I’ve never thought I was brave. I thought that the strength other people saw was just me being very good at faking it. But after the last few months, I know differently. If I didn’t have courage, I wouldn’t be here. I wouldn’t be writing this. Someone said to me recently that I’m “lucky to have the strength to fight my illness.” NO. That’s not luck. That’s incredibly painful hard work. That’s me continuing to fight, even when I feel like there’s absolutely nothing left.

You know what the really amazing thing is though? Yes, I exposed myself to people. And in doing so, I expected to be ridiculed. I expected to be patronised. I expected it to make me feel weak.

It’s been the complete opposite. It’s made me strong. I cannot begin to express how grateful I am for the responses I continue to receive. I’ve told many people about my online community, how they support and help me, how they’ve given me gifts, how their generosity has literally given me sight! (My new glasses are on the way!) And you know what they say when I share this? “It restores your faith in humanity.”

This a cliche but god is it true. After my experiences in hospital, with the battle I fight with my body every day, with my feelings about the current political situation in NZ, with the learning I’m doing about feminism and how far we have to go, I find it very easy to despair. I read this article about punitive welfare reform and I despaired more. (Seriously, read that. It is scary shit).

Then I remember all the outrageously wonderful people I call friends. I remember the compassion I have experienced. I’ve always been interested in the concept of compassion – I embrace a lot of buddhist principles and this is one of them. But I’ll admit I’m not always very good at putting it into practice. Since I got sick, I have been the recipient of so much of it – and I’ve developed far more of it for others.

As I’ve said before, being sick can be incredibly isolating. It can be very hard for healthy people, or even people who suffer in different ways, to have understanding or empathy for your experience. I’m so blessed that I have been able to reach out – and have people reach back.

On the subject of vulnerability, I’d like to share Chelle’s blog about disability and the issue of help. I’ve said over and over how difficult it is for me to accept help, but she’s far more eloquent.

If this post feels a bit metamorphic, it is. After seeing my specialist on Monday I feel better than I have in a long time. His treatments are immediate, but more than that, I feel hopeful.

My father has a bag of runes at his house. During the Goat Party the other day, I drew one. Runes are an alphabet but each symbol is connected to a god and has a certain meaning. You draw a rune by reaching into the bag and taking the first one you touch, while asking yourself a question. I take much of this with a grain of salt, but my result was surprising. (Sorry for terrible phone photos). (Also no I’m not pregnant).

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I think it’s talking about breaking out of habits like being a workaholic, and beating myself up when I don’t feel I’ve achieved enough. I think it’s encouraging me to enjoy life more, and to focus on the things I do enjoy. I’m excited by the ideas of movement and emergence. I hope that it means the statis I’ve experienced while ill is about to break. I hope that it means positive change.

So! On to new beginnings! …

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About writehandedgirl

Sarah is a writer who is passionate about social justice, feminism, politics, and cats. She is a columnist and poet and currently lives in Nelson. You can follow Sarah on Twitter (@_writehanded_) or read more of her writing at writehanded.org

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