They say that publishing needs more “own” voices, but what does that mean for people with rare ailments? How does having an unusual condition effect a creative person’s life?
There are plenty of examples in history where creative people were called upon to overcome a sudden or unexpected challenge. There are also times when creative drive led people to giving themselves irreperable damage. Often those stories are billed to us as inspiring and beautiful, something that we can look up to. If they can do it, do can I! But I don’t think that’s all it is. In fact, I think we’re doing ourselves a disservice by focusing only on success stories, because we can ignore all the things that go wrong all the time.
So, for what it’s worth, a list of things about my creative life that being a “zebra” has had an effect on:
1. Health comes first
Artists have a rep for neglecting their own well-being: I mean, has anybody seen an episode of Sherlock Holmes? Or “The Aviator”? Have you read Beethoven’s biography, or that of Robert Schumann? You know what else those examples have in common, though? Privilege.
See, it’s one thing to be a healthy person who makes themselves sick because of their passion for their art. It’s a whole other thing starting from a place where your condition precedes anything else. You’re aware of your body. You know what happens when you neglect it. And you are painfully, painfully conscious of the fact that not every doctor or nurse in the world will help you, not every workplace will be understanding. Being a haunted genius is not sustainable for me – more to the point, I don’t want to be one.
2. In fact, pretty much all the creative cliches can go out the window
Gap year? On what dime?
Telling my boss to fuck off? Without a backup plan?
Living a life of bohemian debauchery? Dude, I’ve spent too long in hospitals already, I don’t want to be contributing to drinking culture even further! (Not-so-fun-fact: In the UK, hospitals are essentially places where people go to get sober after a bender.)
3. The benefits that come from a 9-to-5 are A LOT more attractive to me
Freelancing is perfectly fine, if you can sustain it. But for me, insecurity is dangerous. Not knowing how much money is coming in every month, if I can afford insurance, if I can get support in a pinch, is not something that is sustainable in a long run. And with KTS, I don’t want to be in a position where a trip to the hospital might result in me being turned away.
This is why, when people start talking down on office workers as being “less than” “real” artists, I cannot join in. The “desk job” gives me security to create – not the other way around.
4. I cannot rely on my writing to sustain me
Truth is, I have bad days. Bad weeks. Bad years. Times when the creative side of my life was stagnant, and times in my life when my health prevented me from doing the creative things I wanted. I love my writing, and it would break my heart to stop doing it. But if I had to give up one day to look after myself and my own, I am ready to do it. I, quite literally, cannot afford to pin everything on my identity as a creative.
5. I have a front-row experience of the work of charlatans, false hope, and shitty professionals
I’ll never forget when a doctor chastised my mother for not bringing me to him when I was a baby. I was being examined after experiencing yet another symptom of my KTS, and he turned and told her that he’d had patients he’d treated years before, perfectly cured, and sending him invitations to his weddings.
He’s not the first person to try to guilt us into something. He will likely not be the last.
One thing people with rare conditions have in common is a difficulty of knowing when to hope and when to be sceptic. I was lucky to be diagnosed as a baby, and that my parents raised me with critical thinking. But I also know how vulnerable one can be, and how some people exploit that vulnerability. It’s shitty, but it’s a hell of an education into human character.
6. I also missed out on a lot of other educational experiences
Having KTS means a lot of insecurity – not just physically, but also in terms of day-to-day life. Will I be able to do this outing? This opportunity? This challenge? There was a time when I believed I would not be able to do even a little physical exercise because of my condition, yet, here I am, years later, working towards an instructor qualification in martial arts!
Sometimes, my mind is my own worst enemy. Sometimes, my body rebels too. And so I miss out – I miss out on gradings, I miss out on social events. I miss out on falling in love. I miss out on a lot of things that are the lifeblood of creative life. Unsurprisingly, my first poetry collection is essentially a treatise on loneliness and feeling like a monster in your own life. .
7. Being an “own voice” comes with a degree of caution
I have written before that I cannot speak for every person with KTS. I stand by that statement, which is why I never write about it in my stories. There is a danger in becoming “the person” to talk to about a condition because there is a danger that others might feel alienated, if their experience does not match yours completely. It’s one thing when there are multiple “own” voices, amplifying and supplementing each other. It’s another when you are literally the only person writing about it.
8. Sometimes, you don’t want to be the only voice
Believe it or not, I don’t want to become a spokesperson for KTS. I have it, and it impacts me, but it is not all I am. And while I have no control over how people cast me as, I have a choice about what I write, and what I leave out.
9. “Diversity in publishing” does not trump quality
At the time of this writing I have written over 10 novels, queried 2, plus an untold number of short stories, articles and essays. Wanna know how often my status as a diverse author has swayed an agent or a publisher?
Don’t get me wrong – publishing needs diversity. But it doesn’t matter if I am a zebra or not – if my writing doesn’t cut it, it doesn’t cut it. And even then, there is no guarantee.
10. The fact that I have KTS might mean I’ll never be successful
Publishing, as I have discovered in the last few years, is 10% actual writing and 90% marketing. As an indie author, and a freelance writer, the only way I can get people to ready my stuff is if I plug it, day in, day out, 7 days a week, or less, if technology is favourable.
I can’t do that. I haven’t got time, and I haven’t got spoons. Most days, I drag myself home from work and I try to work on my PhD. Maybe I’m successful. Maybe I zonk out, watching old episodes of Bones. If there is time, I’ll work on my own creative projects. What I don’t have time for is tweeting, reblogging, doing livestreams, or having a reading through Instagram until after midnight. I don’t have the spoons to read my own reviews, let alone comment. That is the fact of life, and maybe that will mean I will never be successful as a writer.
As depressing as that is, though, it’s something I’ve had to accept, because it allows me to move on.
Once I realise there are things I cannot do, things I cannot change, things that I cannot make a priority, that makes the #Anxiety of being a creative a lot less bearable. I have space to breathe, and I have space to create. And if success comes, it will come because I built up something that was sustainable for me.
At the end of the day, it’s the best that I can hope for.