Monday 25 February 2019

Spoonie Writer: Missing Out


One of the biggest things I learned a as spoonie writer came this past November. I was all pumped to do NaNoWriMo and I had everything planned, ready to go and was super excited about it because I would be finished my last two projects and starting two new ones while grabbing my 50K words. Of course, it didn't go as planned. I was already sick and struggling with fatigue in October and then my port died. For those who aren't aware, I have a port which is a kind of central line that allows IV access for infusions and other meds. I also got the letter that I would be having two IV iron infusions and because of that would spend three Fridays at the hospital. I ended up needing a mid-line which took care of another day I could've worked and it became very clear that I was not going to have the time and be well enough to do NaNo. So I made the choice to do fewer chapters and take care of my health.

And I'm not going to lie. It sucked. I had all my friends talking word counts and how close to goal they were. And then there was me, cheering them on, but otherwise not really managing much. It didn't help that the mid-line got infected and that led to me feeling even more crap, but it did get me thinking about how as spoonie writers, we're not just juggling projects and writing time, but also our health and the spoons we have (theory explained here) for the day.

And a big part of what I learned was that we are always going to be at risk of missing out. When I was picked for Darker 2017, I was newly on the oxygen all the time, newly in a chair full-time and I was scared that I wouldn't be able to go, or worse, that the journey would tire me out so much that I couldn't make it to the signing itself. I mean I planned as much as I could. B drove, we stayed an extra night so that I could have the Sunday to rest and try and get ready for the journey home. And bar having to leave an hour or so before the end. I did it. I made it through. I went on to do two more signings before I did Darker 2018 and while I had to leave a little early, I made it to the ball both times. It felt like an amazing achievement.

But that's just it, we're waiting for our health to take us hostage. We know that when we say yes to something, there's always the risk that things will change on a dime and we'll be stuck having to pull out. But I wanted to write this piece to let people know that while it happens, while it sucks, and while it will always suck and probably never get any easier, it is okay to need to take that time to recover, and do what you need to do.

A lot of the time I feel like the writing world is set up in a way that's not all that accessible to those of us with spoons. There's a lot of things like NaNo that make it harder for someone with limited energy to get things done. And that feeling of missing out never gets easier. You feel like you're even more isolated when writing itself is very isolating on its own. There are accommodations made of course, when you find that group of writers who get you, and they are out there, it just takes time. It took me almost 15 years to find mine! But when you find that group, you'll realise that they will be with you through thick and thin. When you're missing out, they'll make sure that you're not alone in that feeling. They'll be the ones to cheer you on and help you with whatever you need.

One thing I have realised since finding that writing group is, I didn't realise just how isolated I was. In the past year I have joined The Book Robin Hoods (author sign up here) and I was suddenly opened up to all these authors who got me, who were writing stories like mine, who wanted to read my books, who got to know me and were happy to do so. I found people who I could make a circle with and then beyond that, I found one of my CPs, who I adore! It helped me take those first brave steps into Twitter and from there I found even more people. I now have a feed not of people tweeting about their books, but of people helping each other and wanting to connect.

Beyond that it has opened up Instagram and Tumblr to me. Both social media that I loved using but never really got the hang on what to do with. It also gave me contacts with people on Authortube, and from there, more friends. And while not all of them are spoonies, they do all cheer me on, they do all help with that feeling of isolation and also that knowledge that even if I do miss out on something, I have people who get it and will help me through. And that's something that is so much more than most people realise.

In all honesty, I am becoming more and more housebound. I generally don't go out unless it's something like a hospital or doctor appointment, and then beyond that the odd hair did'ing. Writing this in my office now, I don't think I've been out of the house this year bar the Mepo doses. And that feels terrifying when I consider just how small my world has become. But yet I open up my computer and there I am connected to not only other writers, but people I few as my friends. I know that I should try and get out more, and I do, every day think of some way to do that, because I am somewhat missing out on the world, but for now, it's my life. It doesn't mean it will always be like that.

My advice to you, as a spoonie, is to accept that sometimes you will miss out, to look for your writing community however you can and to remember that you don't have to be alone on this path. Good luck, and keep writing!

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