As you are aware September is dystonia awareness month which makes having my next author to meet on my blog more exciting. Karl Kiddy is a writer and dystonia advocate who published Warriors of Dystonia which I’m proud to have my story so far in.
Meet The Author: Karl Kiddy
A huge welcome, Karl. Please tell us a bit about yourself?
My name is Karl and I am a Welshman living in Belfast, with my two amazing daughters, my wife and a cat named Willow. I have been an artist since I was a teenager and have dabbled in everything from Pyrography (burning pictures into pieces of wood), to photography, blogging, video editing and production, to writing, and dipping in and out of podcasting. I’m a heavy metal music fan, as well as having a passion for horror movies and pretty much anything in that genre when it comes to comics and books too. In my spare time, I as the whole reading and project thing, I am a gamer, and would play a lot of Xbox, I also love cooking and would do just about all of the cooking for myself and my ladies. I have self-published five books, with Warriors of Dystonia being my most recent book and project. Only one of my other books have been written under my name, with the rest of them, as well as many of my other projects, being done under a pseudonym due to the shamefully juvenile humour that I use throughout. About 14 years ago my journey with Dystonia began.
Q. The book released is a compilation of the stories of people with dystonia, what made you decide to raise awareness to this little known condition?
It’s difficult to really narrow this down as I believe that Warriors of Dystonia had been bubbling under the surface for a long time. Having dystonia myself and knowing that due to very little being known or understood about the disorder I had been plunged into a few scenarios where I struggled and I was left feeling humiliated. A combination of this and having to say that I had Parkinson’s for people to consider my limitations made me think, “enough is enough.” I want to be able to live in a world where we can say, “I have dystonia,” and for people outside of our community to have some sort of an idea of what it is that we are talking about. I knew that there was no way I would be alone with wanting this and so I thought about using one of my favourite mediums, writing!
So, my goal was to make a book where fellow people who have dystonia can see they are not alone and that they can handover to a person and say, “this is my world!”
Q How easy was it to get people together to share their experiences and bring it all together.
As a whole, it was hard work. I wanted the book to feel like you were having a conversation with the person or perhaps you were sitting in on a chat that they were having. No matter what anyone tells you, we are a nosy bunch us humans, and we are naturally very interested in the ins and outs of the lives of others. I’d originally been thinking of ways of directing the content that was share with me, but I am glad I gave everyone free reign now!
Getting people to share their stories was the easy part. I won’t go into too much, as I will probably use the same methods again, but it snowballed to a point where I had to close the original submission date three months earlier than I planned. At that point, I had so many and at that point the book was four hundred pages! The hard part was the admin behind the scenes. I needed to set up a form which logged the names and details of everyone who contacted me either sharing their story or offering to share a story. The editing of the book was difficult. I had a file which was a mass of various length stories, terms, medications and treatments that I had never heard of and I then had to work out how I was going to compile it. This was before I even started to then format the thing!
Q. You are an active campaigner to raise awareness of dystonia, how do you fit it in with other aspects of your life?
Anyone who knows me will know that when I have my heart set on something I will do it. Whether it is work related or a new artistic venture I want to try, if I want to give it a go then nothing will stop me. Then, once I have set my mind on it, I will invest everything in it. For as long as I can remember, I have never really slept for long and so I work on Warriors of Dystonia in the early hours of the morning. It would also be these early hours that I would squeeze in some of my other passions too. By the time my girls get up for school I have probably already got a few hours of my actually job done, an hour on the Warriors of Dystonia or perhaps I have been out and taken photographs of the lovely sunrise. As I start my job so early, I often have a bit of time in the afternoons to work on my projects too. Then there’s the weekends, where I will still be getting up and out of bed at some ungodly hour of the morning!
Q. Lots of stories must have been overwhelming to hear, do you have a support network around you?
Yes, absolutely. I have to be honest, when I knuckled down and began to really read the stories back-to-back I was struggling at times. Reading the book is different and there’s a bit of a barrier or distance between the reader and the storyteller. I was interacting directly with every single person in the book. Many of which we were in back-and-forth correspondence. Going through the story and knowing that person and talking with them was a very different experience. However, with that being said, it also made me so proud to be able to do this. There were a few people who I spoke with who have dystonia so bad that this book was their first opportunity to tell the world what it was that they were battling and dealing with every single day. The sheer determination was inspiring.
I’ve always been very open with my feelings, so have no problems of just saying, “I am having a crappy day.” You know, that feeling when you wake in the morning and you think to yourself, “I don’t know why, but it’s going to be one of those days.” I just warn everyone. That way, it isn’t a great shock to anyone if I am not my self.
I have a great support network in my wife and daughters. Just having a cuddle from them or listening to their stories about their little lives is priceless. I love going for walks, so I would often go for a long walk with my wife and talk at her about whatever it is that is going around in my head at that point.
Q. Have you found this project has impacted your life more than you expected?
Yes, definitely. I have made so many new friends and my faith in humanity has been restored thanks to the dystonia community being full to the brim with some of the most lovely and sincere people I have ever had the pleasure of interacting with. Absolute warriors and so inspirational! From the very start of working on the book, I was exposed to a whole world of forms of dystonia that I had not only not heard of, but wouldn’t have ever stumbled across if it hadn’t been for the work I was doing. It showed me that dystonia awareness is not only vitally important outside of the dystonia community, but within it too. Finally, I guess what I almost selfishly planned to be a one-and-done in regard to this project has lead to me wanting to champion and awareness as much as I can whenever I can. Warriors of Dystonia continues to grow, and I am proud to have started it.
Q. You are also a self-published author, can you say a bit about this or is it top secret?
Being a complete control freak means that the self-publish route suits me just perfectly. Whenever I have written a book, the formatting, layout, cover art and pretty much every other aesthetic as well as the writing must look exactly how I want. There’s a method and plan behind my madness! The downside is that you discover that writing a book is easy, it’s the getting it out there into the public eye that is difficult. Although it would be fantastic to see Warriors of Dystonia in books shops, the word Dystonia isn’t something that you just stumble across, so I would expect that most people who are looking for a book about dystonia will stumble across my book when scouring the internet.
Anyone going down the self published-route needs to be prepared to have a plan of how they will release their masterpiece onto the world, and this needs to begin before the date you plan of unleashing it. You need to drum up interest, use all of the tools the internet gives you, put yourself out there so that people get to know you and then talk to your audience. Warriors of Dystonia the book didn’t exist in January 2020, but by the time it was released, everyone who had been following the project knew exactly what it was that I was putting together, when it was coming out and knew a lot about me. Once the book is released, you must keep up that momentum. This is where I struggle, because I keep thinking that any time that I am investing in marketing could be time spent writing or working on a new project!
Q. What is your next project?
I have been writing under a pseudonym for many years and my plan is to continue something I started many years ago under that alias. When it comes to writing, my passion is in surreal, off-the-wall comedy and horror. As well as that, I have drafted a plan for a podcast that I will be hopefully starting this year, it will be another one-man-show, and will be a mix of reviews, random stories of the week and probably a lot of swearing.
These are regular questions I ask everyone, but you may want to skip some if you don’t want to discuss your other books.
Q. What is your favourite book?
The Pilo Family Circus and the Skulduggery Pleasant Series. Pilo Family Circus is one of the most unique horror stories I have ever read.
Q. Who is your favourite author?
Derek Landy, bit that’s because I absolutely love the Skulduggery books.
Q. Is your writing influenced by the books you have read?
I would say not really. My writing is a messy amalgamation of influence from films, comics, music, with a splash of books. One of my biggest influences is life and the characters I meet along the way.
Q. Where is your favourite place to read or write?
I enjoy reading in my living room with movie soundtracks or instrumental music playing in the background. If I have music on that has lyrics my brain tends to start drawing me to the music.
Q. When did you begin writing and how did being published come about?
I have been writing ever since I was a young teen, but I really got into it after I wrote a controversial short story about my secondary school, a killer bear and the carnage that ensued when that bear got to the school. It was over-the-top, completely inappropriate comedy mixed with horror; a printout of the story started to circulate around my school and I became a legend! I absolutely loved hearing about how funny people found the story. Years later, at university, I wrote a series of stories about my life and once again I found it fantastic to see people reading my work in the workshops and laughing. In 2006 I completed Nanowrimo and at the end of it I put the transcript into a book. Seeing an actual physical copy of the story in this way made me want to put more out! I then created my first writing alter ego and haven’t looked back.
Q. If you have a genre you write, how did you begin writing in this style?
I love writing comedy that is mixed with horror, occult and it always tends to be quite surreal and totally unpredictable. Some of my inspirations would be the unpredictable comedy of Reeves and Mortimer, the surrealness of Monty Python and the crude, horror-tinged shock tactics of League of Gentlemen. I also love to listen to paranormal and conspiracy podcasts too as they offer a writer such a diverse pallet of characters and stories!
Thank you so much for joining me for a natter and all you do for the dystonia community. More information on Karl’s book follows.
Warriors of Dystonia by Karl Kiddy
“Dystonia is the third most common movement disorder behind essential tremor and Parkinson’s disease, yet hardly anyone has heard of it. Little is known about the condition or what causes it, but what is certain is that it can affect anyone at any age, at any time, any part of the body and has no cure. Whether directly having dystonia or caring for someone who has it, Warriors of Dystonia shares the candid, emotional journeys and experiences of people from all over the world whose lives are affected by this chronic neurological condition.”
Warriors of dystonia
Website – https://warriorsofdystonia.wordpress.com/
Facebook – https://www.facebook.com/WarriorsOfDystonia/
Instagram – https://www.instagram.com/warriors.of.dystonia/
YouTube – https://www.youtube.com/channel/UCEFh6BtXWlE8BYM_T7AC6cw
Purchase book: https://warriorsofdystonia.wordpress.com/
More information about dystonia: https://www.dystonia.org.uk/
Thank you again Karl for joining me and good luck in your next project.
An update on my challenge for Dystonia Around the World, migraines and dystonia attacks have meant I’m slower than normal but I’m now on book 5 of my readathon to raise awareness and fundraise for dystonia UK. I will be updating my page here
Happy reading and writing!