Spoonie Writer: Coping With Reliance

SPOONIE WRITER: COPING WITH RELIANCE

There are two things that brought this piece to mind. One is the part of spoonie life when you're realising that you need to rely a lot on assistive technology. Whether that's a wheelchair, or walker, or using text to speech software so that you can keep writing. The other reason is the feeling of being unreliable when you're a spoonie, not just for personal things, but for the parts of being an author where you need to be doing something at some time, and your body just doesn't get with the program, and you end up having to cancel, or move the deadline.

Now both of these are more than okay. There's nothing wrong with needing help, and it's more than understandable for you to need flexibility as a writer because of you chronic illness. But that doesn't make either one any easier to cope with. I've been published for over fourteen years, and I still look back at the years I didn't write because of health issues, as a bit of 'wasted' time, even though, logically, I know that I couldn't have managed it then and needed that time to focus on other things, like getting my degree.

But yet the brain can be against you and the whole idea of needing to be productive to be valid is a hard battle to fight within yourself, and within the writing community. It's never, usually, framed in a bad light, people are never, usually, telling you that because you don't write this much, or because you need this or that, or because you weren't able to get to this thing, that you're not really a writer. But that doesn't stop the brain gremlins from speaking up and letting you know that's what they think.

I've been really lucky in my writing life that I've always had the support from my friends. I've always had people, even though at the beginning they weren't all writers, telling me that I was doing the best I could, and that was okay. But it took me a long time to be okay with the fact that I needed that reliance, that extra help, and also to be okay with the fact that to some people, I would always be 'unreliable' or 'unable to follow through'.

And for that I really don't have much advice, other than to remind yourself that it's okay to take your time, and it's okay if you need help, and it's okay if you have to re-schedule something because of your health being a pain in the butt. And it's also okay to not be productive. I spent NaNoWriMo last year going at double speed, and while I don't regret doing it, I am still paying for it now. It's something that I'm having to pull back on because I pushed myself so close to burnout. And for what? To prove to my brain gremlins that I was valid?

I AM valid! Just as any other writer is, any other author. You don't have to be madly productive to meet that limit of suddenly being valid, to somehow proving that you are doing this. You're doing what you have to do, to keep yourself healthy and the words coming, and if that takes you months and years, and takes someone else less time, that's not because you're doing it wrong. You are valid. As a writer, as an author, and as a person. End of story.

So I know this isn't the usual tone of my writing advice pieces, but I felt like it needed to be said. I'm struggling right now on a year of limited sleep and still no end in sight. I know that it's hard to get going, and I don't need brain gremlins trying to convince me that because I find it hard, I'm somehow doing it wrong.

So remember that, you're not doing it wrong. Keep going, keep writing, and keep knocking down those brain gremlins!

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Spoonie Writer: Dealing With Holidays

SPOONIE WRITER: DEALING WITH HOLIDAYS

It's that time of year again, when everything seems to pile up at once and all the spoonies in the world are struggling to get through a stressful, flare-filled time of year. Whether you celebrate Christmas, or any other holiday towards the end of the year, you're having to deal with pain, writing, and relatives all in one foul swoop. We're not there yet, but I thought that I would start us off right and give you some of my tips for both keeping on schedule and also not working yourself into a flare.

I celebrate Christmas and usually spend this time of year going between parents, and getting all the bits and pieces together for both the holiday and the stuff that happens afterwards. I'm pretty lucky to have parents who get that I need to do things on a schedule and that things can change at any time. The new oxygen concentrator I have now is a smaller one, but it has a limited battery so that means making sure I can charge it up when needed. But that's just me, how are you going to balance both writing and getting through the holiday season? Glad you asked, because I have some tips for you!

#1 PLAN AHEAD
As you all know by now, I am a super planner when it comes to my time. I've talked about how I use Sticky Notes to plan my month and slot things in when needed. (Piece found here) You don't have to go to that level, or even use the same idea, but planning your time, and when you're seeing who and all of that will help you schedule things like rest days and days for writing. It doesn't work for everyone, but it's been a massive help for me.

It means that I can make sure my writing days are blocked off, but that the days when I'm seeing family or doing something strenuous can be surrounded with low impact days, or days off completely so that I can recharge and make sure that I'm not going to be pushing myself into a flare.

#2 HAVE DAYS TO DO NOTHING
Along with point one, there should, always, but especially around the holidays, be days when you do nothing. As a spoonie, you know that your energy levels can change and can have an impact on what you're doing. So filling your time with high-impact stuff is just going to make you miserable, and possibly sick. I try to make sure that I have at least two days a month where I'm doing nothing, but I also have a lot of low-impact days to counter the days when I'm working long hours. It's important to rest!

#3 COMMUNICATE WITH PEOPLE
There are gonna be some instances where you have to cancel, or you need to alter how things are done. I know it sucks, I know it's hard to advocate for yourself and that for some people, their families aren't supportive. But if you can, let people know what you're able to do, and how long you can stay. Allow them to plan for times when you might not make it. This goes into planning your time, but make sure those important to you know what you're planning to do any one day. Have some flexibility in your schedule so that you're not having to squeeze things in when you really don't have time.

#4 ACCEPT THAT SOME PEOPLE WON'T GET IT
I really wish this wasn't something I had to say, but it is. There are always going to be some people who demand your time, or just don't get that you can't do everything, and they won't listen to you when you try to explain. I've been there, I've done that, and it's hard as hell. My only advice is to try and not take it personally, which is a big ask when this is something that you have no control over. I get it, I do. My parents are divorced, Dad lives an hours drive from me, and sometimes he and my step-mum don't get that I can't stay for hours and hours and still be okay to get home. I've tried explaining it, but it seems to go over their heads. So I just accept that they're not going to get it, and move on.

AND FINALLY, #5 TRY AND HAVE A GOOD TIME
I say try, because some times there's nothing to do but call the day a loss and move past it. You might have all the plans in the world and half of them have to be cancelled or fall through because of health stuff. You might have plans to write all through the holidays and find that actually, you can't, but try not to let this have an impact on your enjoyment. It's supposed to be a good time, and I say that knowing that things get really stressful over the holidays. The money aspect, the time suck, and the fact that for some of us, we just want to write and get through the month in one piece. But try to make sure that you schedule something in there that you know you will enjoy, something that maybe relaxes you and doesn't take as many spoons, but just take care of yourself.

The holidays are a stressful time for most people, but for spoonies, there's the added risk of falling ill, or having a flare in the middle of them. It's a game I play with my body every year since my birthday falls at the end of the holiday season. If I can make it through Christmas, New Year and then my birthday, I'm pretty happy, and then it's all over and done for a year, and I breathe a big sigh of relief.

Happy writing, and I hope you're able to enjoy this holiday season! Lemme know your tips and tricks for fellow spoonie writers in the comments below.

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Writing With A Chornic Illness [CC]

Giving you all the info on writing with a chronic illness, and how to deal with it. #Authortube

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Spoonie Writer: Writing When You Can Revistied

SPOONIE WRITER: WRITING WHEN YOU CAN REVISITED

I haven't written on this subject in a long while and it felt like, since I was revisiting over post similar to this one, that it was a good one to focus on. If you're interested, the first post can be found here. I will just clarify that a spoonie is someone who has, through mental or physical disabilities and conditions, limited energy that impacts how much they can do in a day. I started these pieces because I felt very much like a lot of the usual writing advice posts that I saw focused on getting as much done as possible in one day, and didn't really account for those of us who just... can't.

So, in the time since I first talked about this, I have been dealing with a number of new health conditions. I have also gotten a whole lot more organised not just with my working life, but my personal one too. I have a routine that helps me stay on track with my goals, but also allows me time to rest, recuperate and get stuff done.

I could talk to you about organisation, but I've done that before. It is something I intend to touch on again at some point, but this piece is for the spoonies out there who know that no matter how organised they become, they will never hit that point of having written 10K words in one writing session. Or taken part in a twelve hour writeathon, or something along those lines. This isn't a jab at those that do manage that, more power to you, but this piece isn't for you.

I wanted to write something because I've noticed a lot on online spaces for writers, whether that's on Tumblr, or Twitter or somewhere else, that a lot of pressure is put on people to achieve massive amounts of work in the smallest amount of time possible. I do that to some degree, but what people don't see, and did when I did a day in my life vlog on Authortube (video found here) is that I spend half of the working day relaxing and the other half up in bed, ready to call it a night by at least 6pm.

Now I am productive, I know a lot of you know that. One of the reasons I stopped posting the monthly word, pages and chapter count for #JoWriMoGo was that it felt like I was saying to people that: hey I'm disabled and sick and managed this, why can't you? And that's not something I ever want to do. I don't want to be the disabled person that abled people use to make you feel bad. On top of that, I know that a lot of what I manage is done because I've tried and played with my schedule to make sure that I know what I can complete and what I can't. I know that there are bad days when I just can't do anything, so matter how hard I try.

So when it comes to writing, and when it comes to spoonie life, just be gentle with yourself. You know what you can manage and while it may be hard to see other people doing more, and feel that peer pressure to be up there with them, just remember that it takes as long as it takes and that's completely okay. You are battling against things they are not, and it's okay to need to take breaks. There's nothing cool about working yourself to the bone.

On top of that, there are some circumstances where you can find your limits and make sure you are as productive as you can be on your good days. Like right now, I normally don't do blog posts until the end of the month, but I wanted an extra day off and today is a good day, so I'm pushing myself just a little to get all of that done now so that I can spend the few days after Mepo relaxing and just doing no work at all.

Sometimes you have to take what you can get, and writing is no different. So even if you will never win Nano, or you'll never write for a full 12 hours, or you'll never hit 10K in one day, hell, even 2K, that's okay, because so long as you put words on the page, you're still winning. You just gotta go at your own pace. It's not a race, and you will get there.

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Disabled Characters FTW! - The Creative Process

DISABLED CHARACTERS FTW!

I talked last week about representation (found here) and this week I want to touch on something near and dear to my heart, and that is: disabled characters. Now I've talked about this before (pieces here and here, video here) but it's been a long while since I really spoke about this issue. A lot of the time, it feels like disabled characters get forgotten about. We end up with the tragic ending, or being cured when actually we're just happy being in fiction. There's a lot than goes into this, some of it is the belief that disabled people are better off dead, some of it is the idea that every single one of us just wants to be cured magically and go on our way, and some of it is plain old ignorance.

When I started my AuthorTube channel, I did so without really saying much about my own disability. If you follow me there, you know that I regularly open up the floor for questions from my readers, you guys basically. You'll also know that a lot of the time, I got a lot of similar questions: what's wrong with you? It got to the point where I did a whole video addressing that because I just got sick of being asked all the time. (For the curious, the video is here) But what does that have to do with disabled characters and why you should write them?

I'm glad you asked. It's as simple as this. A lot of the time, I'm seen as tragic and/or inspirational because I both write and exist while being chronically ill and in a wheelchair. A lot of the unsolicited messages I get are from people unaware of what my deal is, and therefore asking what's up with me and how does it get fixed. And there in lies the problem. You can't "fix" me. I am, firstly, not broken, and secondly, there is no known cure. And I'm okay with that. There are some days when I'm not, but for the most part, I am okay with the way my life is going. Because of getting sick, I was able to start my writing career and if that'd not happened, I wouldn't be where I am today. But before you start telling me how inspiring that is, read on a little further.

A lot of the time, when people like me are in stories, they're seen as a warning, or a tragic ending. People fawn over them, feel sorry for them, use them as a way to build themselves up and generally the disabled character isn't at all well-rounded, because they are, at the basic, a prop to spur on the protag and save the day. And that's a really hard pill to swallow as both someone who grew up chronically ill, and someone who writes young adult fiction. As I mentioned last week, I don't think abled people should be writing about the struggles of being disabled, but that doesn't mean we have no place in your story. It also doesn't mean that for a happy ending, the disabled person has to be cured or die so that they are "no longer suffering."

I say it like that but I know there are a wide array of views when it comes to both the disabled community and the chronically ill community, the crossover between the two is a lot and everyone is different. I am not, by any means, claiming to speak for anyone but myself. I'm not the voice piece and I am only going by my own feelings and thoughts when it comes to disabled characters in fiction that I've read or seen talked about.

So what are my tips when it comes to writing disabled characters and how can you avoid falling into a trope plot hole that makes it more cringey than readable? Glad you asked, because you know that I love to give out tips on these posts so here's my top five when it comes to writing disabled characters.

#1 - NO INSPIRATION PORN
If you're not disabled, then you've probably never heard this term thrown around. Lemme break it down for you, inspiration porn is when you see a photo or video of someone in a wheelchair or visibly disabled doing something completely ordinary. It's then held up for all to see, usually with the words: What's your excuse? It's the bane of disabled lives because we're seen as so tragic that we simply exist to build up abled people and show them that if we can do x then they should be surpassing us by miles. It's a similar kinda thing to that saying: The only disability is a bad attitude. Which is crap and allows me to use this gif to convey it.

 
But this is something you should be avoiding at all costs when it comes to writing disabled characters. You should not be putting them up as the standard to live by, unless they're doing something exceptional for anyone. It should never be despite their disability. Of course mileage may vary here, but personally I find characters who are super awesome at what they do well-rounded when they're not being touted as so inspirational because they got the thing done while also being disabled.

#2 - CHECK YOUR TERMIOLOGY
This is something that applies to a lot of marginalised characters, and that is making sure you're using the right words to describe them. I can't talk on writing characters of colour and how to describe their skin tone and hair, but I can tell you that a lot of disabled people prefer being referred to as just that: disabled. Not differently abled. Not person with a disability. But disabled. Again, mileage may vary and it's not something you have to take my word for, as I said above, do your research and talk to people with that disability when writing these characters, especially if you're not disabled yourself.

Another word that I would rather not be used by those without a disability is the word cripple. It's been a slur against disabled people for a long time, and while some have reclaimed it, myself included, it's not something that should be thrown around. On top of that things like wheelchair bound are seen as a no-go. My wheelchair frees me, it doesn't bind me. In that regard something as simple as switching it to wheelchair user, can be a better idea.

#3 - HAPPY ENDINGS ARE OKAY
As I mentioned above, a lot of the time, disabled characters don't get happy endings. They either die tragically and that is seen as a happy ending, or they get erased from the whole thing. It's okay to write a character who doesn't get cured and yet still survives to tell the tale. On top of that, it's more than possible for someone in a wheelchair or with a disability to have a good ending. To have been part of the action and gone on to have a rich, fulfilling life. It's okay to let us be happy and it's okay for us to stay disabled.

#4 - LOVE HAPPENS
This is something that is shied away from a whole lot and it's a pain in my backside. Disabled characters can have love interests. We can even have sex should we wish to. We're not so faux pas as to never get the girl (or guy) because we also happen to wheel rather than walk. So if you're thinking that your love interest can't be with a disabled character because of the disability aspect, think again, it's possible, it happens, and it should be shown in fiction!

#5 - CURING ISN'T THE END ALL
I touched on this a little in some of the other points, but not all disabled people want to be cured. It was a big thing for me when J K Rowling announced that there were no disabled people at Hogwarts because they'd all be cured. It left a bad taste in my mouth because it just felt like erasure, which is what it is. Disabilities are real, they have a lifelong effect, and announcing that there are no disabilities in your world and therefore no need for adaptation etc, is lazy writing. There, I've said it, and I know I'm not alone there. Allow your disabled characters to stay disabled, because in the real world there are people reading who never get to see themselves in fiction, and who won't get a cure because there isn't one.

So those are my five tips and pointers when it comes to writing disabled characters. As always, if you have any questions, feel free to sound off in the comments below!

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Spoonie Writer: Being A Writer Revisited

BEING A WRITER REVISITED

As I sit here writing my blog posts, while nebulising an attack into submission, I realised that it's been a while since I talked about being a writer while also being a spoonie. I know I'm nowhere near the only one, and that's a good thing because I feel like spoonie writers bring about a different kind of character, but that's a talk for another day. The reason I wanted to go over this topic again is because of one I did recently about awkward conversations when being a crime writer (found here). I mentioned there that as someone who has a whole ton of random conversations about crime, I also get asked that question a lot too. You all know the one I'm talking about. It's the one I talked about in that real talk video (found here).

For those of you who aren't spoonies, or who just aren't following, lemme lay it out for you. When you're a writer, you'll get asked a ton by people what you do for a living. When you're a spoonie you get asked the same, but there's a whole different tone to it. This is how it usually goes.

THEM: So, what do you do for a living?
YOU: I'm a writer.
THEM: Oh that sounds cool! Do you make enough to live off?
[This is a really rude question btw!]
YOU: *shrugs*
THEM: So do you work anywhere else?
YOU: No, I'm also disabled/chronically ill/both
THEM: Oh...so that's why you're a writer! You  have nothing else to do with your time. Wish I had time to write a book.
[Also really bloody rude!]
YOU: Well, I do do a lot of work, it's just more about being able to set my own times, days and schedule.
THEM: *no longer listening*

I get this a lot. People assume that because I'm a writer, I work another job, which is a fair assumption to make since the majority of writers do work elsewhere because writing isn't a case of write a book, become a millionaire. However, when you bring your health into it, that's when the tone changes. Suddenly you're no longer a serious writer, you're someone with too much time on your hands and you "play" at writing. It's not a real job to you and therefore isn't valid as an actual occupation. And I have to say, it really grinds my gears when people make this assumption.

I mean, I know I'm not alone, and I know it's not limited to spoonie writers. I watched an awesome video about the things people say and questions they ask when they find out you're a writer (can be found here.) But when it comes to spoonies, the implication is that because we're also sick and unable to work a conventional job that we are, somehow, not really writing but playing a game that the grown-ups let us play. Like seriously? I'm 36 years old, I've written a ton of books and a few weeks ago I celebrated having been published for over 13 years. I'm an author. I'm a writer. And no one can tell me otherwise.

Remember that, and along with the rude questions of money issues, remember that you're valid no matter how you write. Whether you take years or months, whether you also manage to do some outside work as well. You are a writer. You are valid, and your stories are needed. Keep writing. It's gonna be worth it in the end.

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Real Talk #002 - What's Wrong With Joey?

That frequent question finally answered!

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Spoonie Writer: Taking Care Of You

SPOONIE WRITER: TAKING CARE OF YOU
 
I've been a spoonie for the majority of my life. I've been a writer since I was 19 and published almost 13 years now. One thing I have been very clear on is that you gotta take care of yourself. I've talked about this in other writing pieces, in vlogs, and all over the internet, but sometimes it's good to have a reminder of why you need to make sure you're taking care of you as well as your writing.

Now it's been a while since I did a piece like this, so I'm gonna quickly recap what a spoonie is: A spoonie is someone who is chronically ill and identifies with The Spoon Theory. How am I a spoonie? Well I have several chronic conditions including Fibromyalgia, M.E. and a rare form of asthma that leaves me reliant on oxygen and in a wheelchair. Now that parts over, lets move onto the main focus of this piece. Taking care of you.

In the writing world there is a lot of pressure to be working constantly. I see it, hell I even do it from time to time. There's also a big feeling that you should be pushing yourself to your limits to both write and build your platform. I am still considered a very small fish in the writing world and I doubt I will ever become a big one. Not because I don't want to be, but because there are certain things holding me back. Namely my health, or lack of it. I work hard, I write mostly every day and I make sure to stay on top of my own deadlines and everything that comes along with writing, but yet I still struggle sometimes.

A good example of this is last month I finished two books earlier than planned. I had pretty much a whole week to do nothing but various other pieces of admin. I could've started my next two projects and spent some of that time planning them, but I didn't, because I knew I'd been pushing hard and I needed to take a break. Now this applies whether you're a spoonie with physical conditions or mental health problems. I'm both and sometimes it's harder to take the time for myself when my anxiety of depression are acting up because there's a lot of stigma that surround them. People see the oxygen tubing and they give me a break for that, but when it comes to needing time because my depression is flaring and my anxiety is through the roof, it's harder. But that doesn't mean it shouldn't happen.

I know that there's a lot of talk about how people should be pushing past their barriers to make sure they achieve the maximum they can in any given time, and that's just not true. There are valid reasons for taking a break. Even if no one outside your own brain is saying that to you, it's still wrong. I struggle with taking time for myself. I don't want to let people down and I don't want to be the one who's always the reason for disappointment, but at some times, I do need to say no. I do need to tell people I need this time for me. It's not easy, not in the slightest and while yes, the majority of people should be understanding, there are some who won't be.

Here's the thing, writing is a creative pursuit. You're using all your imagination and time, and energy and all of that to create worlds from nothing. That has a toll on you. There should always be a chance for you to take some time for yourself, and if the people around you are saying different, then they need to take a step back. Again, it's not easy, I get that. I have friends who don't get that I need time for myself and I get how hard it is to say no to them, knowing that you're causing them upset and discomfort, but you need to take care of you. You are valid and no is a complete sentence.

So my advice is to take that time, take it slow and remember that you matter. You are important and alongside that, so are your needs. Now I'm gonna go and curl up with a book and have some much needed down time.


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