Tuesday 4 November 2014

Spoonie Writer: Worrying About The Future And Your Writing

Spoonie Writer: Worrying About The Future And Your Writing

As long as I've been a writer, I've been sick. Even before I was medically retired and writing became my job, even when I was writing as a teenager in school, I was still chronically ill. I hadn't embraced it the way I do now because this was before the wonders of the online chronic illness community. I have a lot of respect for my fellow spoonies and the ways in which they have helped me. However, as I was saying, I've always been sick as a writer. I have never known any other way to be a writer, I've always needed to move my schedule around and fit writing stuff inbetween the hospital stays, the stuck in bed days and the days when I just can't. I'm not saying that because I want you to look at me and say "Oh wow, she never got to live a different life", or to throw myself a pity party and be all "woe is me. I've always been sick". I'm telling you because my writing journey has been affected by the fact that I have, for as long as I can remember, been chronically ill.

When I was still in school, before the Fibromyalgia and M.E were in my life, I wrote a lot. I wrote poems, I wrote short stories and I did all that because I had a passion for the written word. I loved choosing my pen, my ink and paper and letting all the scenes in my head out into the world. To me, a big part of writing was the act of picking up a pen and actually, y'know, writing! However, things changed after school and my diagnoses. I found that writing hurt. It wasn't the good hurt either, the one where you had written and written and your hand was cramping in protest. I mean, it started like that but eventually the sentences got shorter and the bulk of what I could handwrite was interjected with breaks every few minutes because the pain was *that* bad. I eventually had to accept that I would no longer be able to handwrite my stories because I thought a lot faster than I could ever write. It hadn't always been like that, but it was one of those things that I had to let go of.

I adapted and started to type, which is what a lot of writers - spoonie or otherwise - do. It's so much easier in the world of the internet and all this technology to write with a keyboard. Having been typing for as long as I could form words, I am lucky enough to be able to touch type with some speed. It was a change that a lot of people would look at and say, "your point?" My point is not that I had to make this big change; after all, everything that was handwritten would eventually get typed into my computer anyway. My point is this: when you're chronically ill, you adapt your life around your conditions because if you don't adapt, you have to stop doing things you love.

About a year ago, I developed symptoms that were worrying to me, though not all that uncommon for people with my conditions. My legs would tingle and I'd be unable to bear weight on them. I was becoming more and more reliant on a wheelchair to get around. It was hard for me because I had always kept some level of mobility through my own terms, but now it was all different and I was reliant on being pushed, pushing myself, or using my electric wheelchair to get around. It wasn't how I wanted to be, but the fact that my conditions had gotten worse wasn't all that unexpected. I have been "lucky" in that for a couple of years prior to this new symptom, I had been having very few flares, relapses and new problems. It seemed that my conditions were just getting worse and once again, I adapted.

Which brings me to the point of this piece: I have started to show similar symptoms in my arms. The thought of losing the use of my arms and therefore my hands terrifies me because without the ability to type, I would become very silent. I use my keyboard to do so many things, writing, commenting, research and all of that. The only thing that I keep thinking is that I will find a way and adapt. I'll have to. That's just part of having a chronic illness and/or disability. You find a way to adapt. I know of some people that are bed bound, and they still are as active as they can be doing what they love. They have adapted because they *had* to. A friend of mine is bed bound and is still very active in writing. She has gotten the technology that will enable her to continue writing despite the fact that she doesn't always have use of her hands.

The joy of living in the age of technology means that even if we have to change how we get the words onto the paper, there are always ways of adapting your life so that you can continue to do the things you did before. The fact that things have worsened with my conditions doesn't mean that I have to give up what I love doing. There are voice recognition programs that will allow me to talk and the words will appear on the page. I've used them before and while they take some getting used to, they're not out of the realms of possibility. Just because I'm chronically ill, it doesn't mean that I'm any less able to do what I consider to be my career. I make the times when I'm well enough to work count, and the times when I'm not, I try not to beat myself up about it too much. After all, I didn't choose this for me, but I also can't change that it's happened. So, even though I'm able to type these words myself, it doesn't mean that I can't adapt and change the way I work in the future should the need arise. I can adapt, and so can you.

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1 comment:

  1. You have such a wonderful attitude Joey. I so admire you. Your strength is encouraging. You have a gift (many, in fact) and I am so glad you have chosen to rise above all the adversity. That takes courage and fortitude, all of which you have. You make it seem so easy although I know it is not. You are a blessing! Much love! Keep on doing what you do so well.