Brenda J. Pierson is a fantasy author and editor who wants to write like Brandon Sanderson when she grows up. She has Ehlers-Danlos Syndrome, Hypermobility type like our illustrious hostess, along with a constellation of secondary conditions like fibromyalgia, chronic fatigue syndrome, migraines, anxiety, and more. When she isn’t writing she’s probably reading, playing RPG video games, or eating tacos (mmm, tacos). She’s living the good life with her husband and kitties in her hometown of Tucson, Arizona.
Her new novel, Joythief, is a Persian-inspired fantasy world with a poison that steals the part of a person they love the most. She doesn’t often admit it, but this story was born from her struggle with losing mobility to pain and injuries from her EDS. You can learn more about her on her website, Facebook, Twitter, and check out her publishing company, Incandescent Phoenix Books.
When Sarah asked if I’d be interested in contributing to Our Words, I knew I was going to have difficulties. Not because I didn’t know what to say, but because there is so much to say. Having my fingers in the author, editor/publisher, and disability pies gives me so many perspectives. How could I choose just one topic when there are so many things to cover?
But the more I thought on it, the more I realized many of the subjects I considered applied not just to the disability sphere, but to the publishing sphere as well. Thoughts snowballed from there, until I was overwhelmed by how similar disabilities and publishing/writing really are.
Hang with me here, I promise I haven’t lost my mind. Not yet, at least.
Whether you’re talking about Big 5, indie, or self-publishing, mental illness or physical handicaps, both authors and those with disabilities have to cultivate a certain way of living, a specific mindset, in order to navigate this thing called life.
Publishing: Rejection doesn’t stop once our books hit the shelves. We face it on a regular basis: major changes requested by editors, low sales numbers, one-star reviews, book signings where no one shows up. These are everyday realities to us. But no one wants to hear doom-and-gloom grumpy authors whining about how unfair our lives are, so we smile and say we’re moving on, improving, learning, building audiences.
Disabilities: Sometimes living a normal life is nearly impossible with disabilities. Cooking a meal, shopping, having lunch with friends, going to work can all push us far beyond our limits. But what else can we do? We need to eat and socialize and earn money just as much as everyone else. Time to plaster on that fake smile and pretend like everything’s okay. If we can convince the world we’re fine we can convince ourselves too, right?
Self-care is everything—especially when the world is constantly pushing us to do more.
Publishing: Everyone wants us to write faster and publish more, and it’s so easy for authors to put those demands ahead of everything else. We have been known to sacrifice health, relationships, well-being, any number of important things to finish a project. While it may seem like a good idea right now, in the long run it’ll only lead to lessened quality, frustration, problems in normal life, and burn-out. Far better to take a few days off, rest up, and come back to work refreshed and ready to Art Harder.
Disabilities: Who doesn’t love getting invited to dinner, or parties, or trips with family and friends? For people with disabilities those invitations are often extremely difficult to accept, especially if they come at the last minute. Get up, throw on some clothes, and run out the door? No way. Careful planning is needed for every action of every day. We need to cultivate energy and prep for safety before embarking on even the most mundane of tasks—often this takes several days’ notice, too. Our loved ones might not understand why we can’t always accept invitations, but we can’t put ourselves in dangerous situations just for a few hours of fun. No matter how badly we might want to.
There’s a lot more going on behind the scenes.
Publishing: Research. Writing. Editing. Branding. Networking. Studying. Appearances. Knowing your genre. Understanding the market. Writing a good book is only the first step in a very long, involved, and often frustrating process. The days of Hemingway Hermit Writers are gone. Now authors have a myriad of tasks, from creative consultant to marketing expert. Who’d have thought we’d need more than English class to be successful writers?
Disabilities: There are so many things to consider when you’re trying to live with a disability. Do I have the energy for this? Will it interfere with any doctor’s appointments or medication schedules? Are there accessibility features where we’re going? Am I in danger of getting sick or hurt? Is this going to trigger some kind of reaction? And that’s not even talking about the ramifications the following days—lingering pain, migraines, anxiety, you name it.
Our experiences make us more empathetic.
Publishing: Writers live so many lives. We strive to understand other cultures, other people, other ways of living. We put ourselves in the shoes of the lost, the searching, the broken. What we can’t understand we research and strive to grasp. And, inevitably, you can’t help but love whatever and whomever you understand.
Disabilities: People with disabilities understand pain like few others can. We know what it’s like to sit on the sidelines of life. You can’t live in pain and not ache when you see others in the same situation.
It is exhausting.
Publishing: Yeah, it might seem like an easy job—we sit in front of a computer, at home, in pajamas with coffee and pets and make stuff up! But pulling all this from our hearts and minds, putting it onto the screen, and then having it make sense is a whole different gambit. Not to mention ensuring we hit all our milestones, plot points, character arcs, foreshadowing, promise fulfillment, and having it be entertaining to boot. Writing is a full-brain exercise.
Disabilities: Did your disabled friend make it out the door today? That didn’t come easily, I can guarantee it. Fighting ourselves, body and mind, is a greater challenge than just about anything else out there. And the worst part? We aren’t going to get better. We can’t get a good night’s sleep and wake up in the morning refreshed and ready to go, the bad day behind us. We have to start another day just as exhausted, just as pained, just as trapped by our disabilities as we were the day before. If that isn’t the definition of grueling I don’t know what is.
There are a million phrases we would kill to never hear again.
Publishing: So what’s your real job?
You write books? I have this amazing idea you should write for me!
My job is so stressful, but you work at home. You wouldn’t understand.
Can I get a free copy?
Disabilities: I know, I hurt sometimes too. You just have to push through it.
If you would exercise/eat right/meditate/fill-in-the-blank you wouldn’t be this way.
Why can’t you stop complaining and just be happy for once?
You know, lots of people are worse off than you are.
Our lives often feel one step away from crumbling apart.
Publishing: The entertainment industry is notoriously picky. Public opinion can sway in a moment’s notice. One good break could make our career—but one misstep could end it. Authors live in constant fear that our next book won’t sell, our contracts will be terminated, and we’ll be left alone with our stories and no one to read them.
Disabilities: One attack. One injury. That’s all it takes for our day to be completely ruined. And heaven forbid we’re given forewarning! Nope, it’s fine one moment and all hell breaking loose the next. Best gird your loins and prepare for battle, ladies and gentleman. You never know what the day will hold.
We’re thankful for where we are.
Publishing: We are authors. We write books and tell stories. No, we might not make a lot of money off it, and we might not have “Bestselling Author” in front of our name, but we have accomplished something millions of people dream of. We have written a book, edited it, polished it, and published it. No matter how many we sell, how many reviews we get, or how many followers we have, we have done something amazing. That in and of itself is something to be proud of.
Disabilities: Life is hard for people with disabilities, make no mistake about that. But we persevere. We get up and charge into life with all the stubbornness and willpower we can muster—we even manage to smile despite everything. We might limp along, barely able to escape our problems enough to make conversation, but we don’t let our limitations dictate who we are or what we can do. We live every day grateful we can do as much as we can and seize every opportunity while it’s available to us. That in and of itself is something to be proud of, too.