Internationally Bestselling Quirky Children's Books; Adventurous Heroes Doing Good
I am the NYT and internationally-bestselling author of children's books, which include the NEED series, FLYING series, TIME STOPPERS series, DEAR BULLY and other books. I like hedgehogs and puppies and warm places. I have none of these things in my life.
First off, there is an awesome scholarship being offered at the Writing Barn for Write! Submit! Support! an awesome online class that I’m teaching in 2018. The class is for novelists of all genres, but the scholarship is for middle grade authors.
DETAILS ABOUT THE AWESOME SCHOLARSHIP
Katherine Applegate, Newbery winning and NYT bestselling author, and good friend of The Writing Barn has created the Mary Carolyn Davies/Wishtree MG Write. Submit. Support. Scholarship to be awarded to:
either (1) MG writer for the full amount of a Write. Submit. Support. registration ($1800)
to be shared by (2) MG writers for half the amount of a Write. Submit. Support. registration ($900)
This scholarship honors poet, novelist and playwright Mary Carolyn Davies.
While most people know me as a young adult author thanks to the NEED series, I am in the middle of TIME STOPPERS, a middle-grade series published with Bloomsbury and before my time at Vermont College of Fine Art’s MFA program, I was a newspaper columnist, editor and poet. I think it is super cool how writers can write across platforms and how their work can change as the world changes, their understandings change, and their own needs change. So! Don’t be hemmed in by just writing one thing!
This is a photo of me after receiving VCFA’s distinguished alum award. You can tell I acting in a super distinguished manner right after that. Kekla Magoon also received one. She was way more poised.
So, to harken back to that era of writing, here’s a column that was in a paper a few years ago. It ran alongside an article about drug use in Maine and the lack of care for transients with alcohol and/or drug dependencies.
It wasn’t until well into the afternoon that we found him, dead beneath a shed on Water Street. Then he was only spotted because an oil spill into the Union River brought firefighters and reporters close by.
We noticed his naked feet first. Then we saw him stretched out between car tires and a garage door.
The Bangor Daily News reporter I was with told the firefighters who were still down by the river trying to mop up oil.
“Guys, there’s a body up here,” he said. His voice was quiet, still, a nothing voice and the words fell out into the world and for a moment nobody moved.
But Kenneth Butler was more than a body. He was a man.
According to Ellsworth police, Kenny Butler had a long history of medical problems, including heart trouble. No one’s quite sure where he was living before he died by abandoned car tires last week.
On a normal day, people go missing. Sometimes that gets noticed. Sometimes it doesn’t. On a normal day, people die. Sometimes that gets noticed. Sometimes it doesn’t.
I noticed Kenny Butler’s death. So did that Bangor Daily News reporter. So did his family.
Kenny Butler drank a lot. He did drugs. He couldn’t go to our county’s only shelter on cold winter days because they don’t allow people who are using drugs or who are drunk. Sometimes when people detox, they have seizures. Sometimes, they get violent. So, Kenny crawled beneath the basement of a shed, wedged himself between an old door and some tires. Then he died, in the cold, alone.
The police came, put on their purple latex gloves, strung up yellow tape to cordon off the area. As they took over, I thought about who Kenny Butler might be. I thought too about people who go missing from our lives by inches every day. The phone calls we fail to return. The smiles we are sometimes afraid to give.
I didn’t work anymore that Friday. My little girl, Em, stood close by all afternoon. She tugged on my sleeve.
“I don’t want to die alone,” she said.
Her eyes filled and just underneath that edge of sadness, awakening floated.
“I don’t want you to die alone either,” she added.
The wind whipping up off the Union River grew even colder that Friday afternoon. I knew what she meant. She looked up at a treehouse we were working on. It’s high among four trees. We could have stood on the platform, but there weren’t any walls yet, only tree trunks and branches separating us from falling, sheltering us from the sky.
“It’s the living you don’t want to do alone,” I told her. “That’s more important than the dying.”
When I wrote my first book, my parents were both still alive. I’ve always been the weird one in the family, the one who didn’t make sense, who wore Snoopy shoes and had a weird voice, and was born 14 years after my closest sibling. I never felt like part of a family, but I always felt like my parents liked me okay.
While I grew up, my parents were divorced. My dad was a mechanic and a truck driver. My mom was a real estate agent and then an dental supply company office manager. I saw my dad on Sundays when he remembered. He was an adorable hobbit man, but pretty forgetful, honestly. So, after years of being weird trying to be a poet and things, my first book came out. One of the first blog interviews asked me:
Now that you’re under contract, does your family better appreciate your writing?
This is a hard question.
This is what my dad said when it happened, “Someone bought your book? That’s great. What’s it called?”
“Tips on Having a Gay (ex) Boyfriend.”
We were on the phone.
My dad began laughing, “Ho boy. Ho… boy. Wait till I tell your Aunt Athelee that one. Tell me that again. .. Gay what?”
“Tips on Having a Gay (ex) Boyfriend.”
My father then laughed some more. “Let me write that down. That’s really the title? Ho…boy. Hahahaha…. Ho . . . boy.”
Then about six months later, I was talking to my dad on the phone while simultaneously trying to make vegan shepard’s pie and he said, “How many books have you sold?”
I told him.
“Three? Three! In less than a year?”
“Yep,” I said, dicing onions, which always makes me cry.
He was really quiet and then he said, “Your grandfather was a really literate man. He was a great reader, you know. And my mother…she loved poems.”
“I know that, Dad,” I said, wiping my eyes with a paper towel that smelled like onions and only made things worse. I started snuffing. Dad didn’t notice.
But then he swallowed so loudly that I could actually hear it over the phone and he said, “I’m dyslexic you know. I don’t read very well.”
“I know, Dad. You’re super smart though,” I said this because sometimes my dad forgets that he is super smart because he only went through to second grade. He felt like everyone else in the family, in the world, was smarter than he was. He felt wrong.
The silence settled in and he finally said, “I’m just really proud of you. You know that, right? I’m really, really proud of you.”
So, even if no lovely people ever buy my books, at least I know that I did something that made my dad proud.
This it the Dana Farber certificate my daughter colored when my friend Lori ran the Boston Marathon. My dad died of cancer. He liked tractors.
When I sold my first book, my mother said, the way my mother always said, “Oh, sweetie. That’s so wonderful. I knew you could do it. I am so proud of you. My daughter, the writer.”
To be fair to my sweet mother and to be honest, this was what my mother said about everything I do. Like the first time I made an angel food cake she said, “Oh, sweetie. That’s so wonderful. I knew you could do it. I am so proud of you. My daughter, the angel food cake maker.”
The name of the second book wasn’t much better. My dad kept laughing. Even in my ‘glory’ moment, I amused the hell out of my family due to my complete lack of glamour, and my complete lack of normal.
The rest of my family, I think, were appreciative of the fact that I sold a couple of books. It makes me more legit to them somehow. Which is strange, but typical I guess. In our culture it often seems that the process of learning and creating is often only considered worthy if a tangible product comes from it and if that tangible product has market value.
But to me… the big value was that I made my dad think about his parents and think about books and think about me and made him proud.
So where’s the wisdom in all this? Um….. I think that in our rush to produce, we often forget the joy in discovering. Our culture doesn’t make that easier on any of us, but there’s this great, beautiful joy in discovering, in being quirky, in playing, in creating just for the sake of creating.
RANDOM WRITING EXERCISE:
Write one random word.
Without thinking about it write another random word next to the first word.
Start a new line and do it over again.
You’ll get something like this:
Brussels sky bugs
Dad silences dog writes
Eat trucks Nebraska
And it’s so weird, right? It’s like an almost-poem, but not quite. You should do ten lines of this and it’ll seem like a pretty bad poem, but that’s the point. The point is to make you not try to be perfect, to free up the random muse inside you so that you can write your story or your poem or your novel and be okay with a crappy first draft, or a rough sentence. Writing is work, but it is often play, and we forget that in our quest for product in perfection. So go play! You don’t even have to be a writer. You can find play in everything you do. I believe in you. Sparty does too.
Back in 2008, a man in Florida basically tried to At first, in some horrible, weird way, I was kind of impressed, because seriously, how ironic and anti-Christmas is death by Christmas tree? Like, if I wrote that in a book some reviewer would say, “Jones’ quirky writing style sometime stretches the boundaries of the imagination. The Christmas tree assault was highly unbelievable.”
But the Florida Christmas Tree Incident really happened.
And I was also kind of impressed because this man tried to throw the tree at his dad, which made me think: Wow. Superman Strong. Captain America Strong. That’s strong.
But I was unimpressed because let’s face it — It’s never cool to try to kill your father unless your father is Darth Vadar.
EDITED TO ADD; SORRY! SORRY! IT IS NEVER COOL TO KILL DARTH VADER. VOLDEMORT? HE’S OKAY. RIGHT?
It’s so bizarre because the Christmas tree is currently a symbol of family, of light in the darkness, of celebrating Jesus’ birth.
In 2004, the Pope called the tree a ‘symbol of Christ.’ Anyway, it turns out that the tree was not a normal-sized Christmas tree that touches the ceiling. It was a mini tree. A MINI CHRISTMAS TREE! This man tried to kill his dad with a three-foot-tall tree, and then the metal tree stand, because he didn’t give up after the initial tree throw.
So, in the United States, nine years ago a man was so propelled towards violence that he attacked his father with a miniature Christmas tree, a symbol of Jesus, which leads me to believe that no matter how much I love my country it’s a bit off. Violence isn’t something that we should exalt, use to motivate, or even use to dehumanize others. Yet, we do.
Videos of people beating up other people are posted all over social media and even on our current president’s Twitter account. These are real people. These are people who are hurt or who died and the incidents of them being injured and attacked? That shouldn’t become a way to motivate other people to do what you want them to do. Because you know why? That’s a part of the terrorist playbook from all the way back to the 1980s.
Inspiring hate to go to any kind of war or motivate exclusionary actions isn’t the way to be.
Yes, it’s been done a million times before, but that doesn’t make it okay. Women have been raped a million times before, religions oppressed, races tormented, difference tortured. There have been how many genocides? Because it’s been done, because it’s currently being done, doesn’t make something right.
Taking an act of personal violence, twisting the facts around it, turning it into propaganda, and using it to incite anger against other groups of people isn’t the high road. That’s not what Christmas is about. Let’s work against it being what our country is about and all of us who have Christmas trees? Let’s not use them as weapons any more.
1. One of my blogging friends was feeling sad yesterday even though he is published because, basically, he’s worried about being a mediocre writer.
2. It is easy to worry about this.
3. There’s that essential sense of horror when you’re a writer (in such a subjective field) about never being good enough, never making a difference, never being on a NYT bestseller list or being nominated for a National Book Award, or any award, or never getting published, or never having people notice your book exists.
4. That’s not what writing is all about. (Note: I forget this a lot.)
5. One of my friends who is not a writer wrote me this in an email a long time ago when I was worrying about not doing enough good in the world because I am just a writer (He does good all the time). He wrote this:
“You never know what kind of positive effect you are having in someone’s life as an author. Even if it is just that someone can escape for an hour from their life, that may be the best part of their day. Think of the kid who doesn’t like their home life or maybe their school life or maybe both. When they pick up a book by Carrie E. Jones, they get to escape the realities of their life and lose themselves in somebody else’s for a while. How cool is that?”
If you are a published writer and having a bad day you can just substitute your name in there because it’s true for everyone.
If you are unpublished writer and having a bad day you can do the same thing because you are writing, you are creating, you are escaping and thinking and plotting and feeling and that is a positive for you – FOR YOU! AND YOU MATTER! – and hopefully for other people too some day.
There’s been a lot of articles about how reading builds empathy. And in this world? Empathy is important. Acting kindly, not making jokes about political opponents, not disrespecting other people, other cultures, other genders, other ways of being? That happens when empathy happens.
So, if you are a writer or an artist or a reader or just a person who cares, who feels like you aren’t doing enough in this world, like you don’t have any money to give on #givingtuesday, it’s okay. Give your thoughts. Give your time. Give your kindness. Don’t pull yourself down because you feel like you aren’t making a difference. Just keep going, keep doing, keep surviving, keep shouting/singing/whispering/loving/keening your story out there into the world. Try to treat people with love. You’ve got this. Thank you for being made of star dust and empathy. Thank you for being you.
Writing News: You can still get the ebook version of Time Stoppers on sale until tomorrow? The link to it is here.
I come from a theater background – sort of. Basically, I spent a lot of my time singing and dancing and acting (badly) when I was growing up and then in college I spent a lot of my time directing and acting (badly) while I was getting my political science degree.
I’ve always talked about how using the basics of improv helps writers get over things like writer’s block, etc., and at Vermont College, I focused my graduation presentation on using those tools to help kids write.
Lately though, I’ve been thinking more about how authors are really using all the roles of theater when they create novels. We have to be actors because we have to live inside the characters and make them three-dimensional representations of people. We have to be directors because we put the story together and tell the characters where to go, and determine the viewpoint that we’re seeing the character. We have to be set designers as we create setting. We’re stage crew bringing props in and out. We’re producers because we’re putting the whole production together. We’re writers because… Well, we’re writing.
But right now, I just want to focus on how authors are really actors playing every single role in the story. That’s a lot of effort, honestly.
Method Authors – Method acting is when you immerse yourself in the role; you become someone other than yourself. Do writers do this? Sometimes, but not often. Usually we spend a lot of time researching things our characters like but not becoming the characters and/or pretending to be them. I wonder why.
Living In Another World – Actors live in the world of the moment, of the world that they are acting in. Novelists need to do this too. We have to immerse ourselves in the world that we’ve created, to envision the details, see the events, feel the feels. The best novels use concrete details to show character and place. To find concrete details, we have to see concrete details. We have to build worlds piece by piece and symbol by symbol until they are believable.
Back Story – When I was training in theater with Paul Kuritz and Pope,L, and Marty Andrecki, they all focused on the back story of the roles we played. To understand the character in the moment, we had to understand the moments that came before, what brought our character to this place to react this specific way in the play. And we didn’t need to know just the history of the character, but the history of the world and the cultural implications that influenced that character. Authors sometimes do this, too, but I think some of us could do it more.
Study Real People – To understand nuance and tics and behavior, actors often study real people and model a character on that person, or at least model a behavior of a character on that person. Writers often do that, too.
Acting and writing require empathy. You have to move outside yourself and envision how someone else will react, feel, think, instigate. That’s important when trying to create a world of civility and positive change.
Random Exercise That’s Supposed To Be Helpful
A lot of the time at school visits, I talk about the weirdest places I’ve gotten ideas and how some of those ideas are so bizarre that a sane human would just thrust them out of their mind. I talk about how you have to ‘say yes’ to your ideas no matter how weird they are, no matter how much we doubt them.
I talk about how the idea for the NEED series came from seeing a strange smelling man on my way into a fair. He had a tail wrapped in fabric. He had silver eyes. Enough said, right? While other people might have thought he was a random guy doing cosplay, my brain jumped to “human-sized pixie about to cause an apocalypse.” Since, I didn’t reject that idea and wrote about it, I ended up getting a book series that was an international bestselling.
So, what I do is have kids stand up with me and one of them has to say ‘no,’ to everything we throw out. So it goes like,
“Hey, let’s write a story about human-sized pixies?”
“And they have to save the world?”
“Gerbils who fall in love?”
“People who climb a mountain and find a rainbow unicorn?”
And it goes on like this for a minute and when I stop them, I ask, “So what happened?”
I ask if we got a story. And the answer is always, “No.” We laughed, but we did not get a story.
Writers do this to ourselves all the time. Actually, people do this all the time. We reject ideas for being too weird, too overdone, too normal, too abnormal, too anything. The secret is to go with the idea, to say yes and see what happens. That’s how stories are made.
You’ve started having all your characters drink Coke Zero in every scene in hopes of a sponsorship.
ie: “Mmm, this Coke Zero is yummy,” Chloe said, quenching her thirst and then staring at Brad as the realization sunk in. “What do you mean, my dad is a gorilla?”
“He’s a primate, I swear. I saw him drinking a Coke Zero with Principal Johnson,” Brad said, sipping his own Coke Zero. “They were using bananas for straws.”
“Liar!” Chloe threw her Coke Zero at Brad. Precious Coke Zero spilled over the floor. Cola, the dog, quickly lapped it up.
2. You’ve started signing on your picture book query letters MADONNA or BEYOND or even IVANKA in the hopes that someone will read it.
Note: This is likely to be more successful if you also dress up like Madonna and send a photo of yourself in that pointy bra thing she used to wear in the 1980s. This works for both men and women.
Hint: Try not to send audio files of yourself signing “Material Girl.” Only your mom finds that cute. Really. This is also true for both men and women.
You agree to put full page ads for diet pills in your tween novel about girls in cliques who like hair products and spas. Just for the heck of it, you put in hair product advertising spreads on pages 229 and 123-124.
You post a mantra on your computer: IT’S NOT SELLING OUT. IT’S JUST ENSURING FISCAL SUCCESS.
This almost happened to me twice when artists put guns on my cover even though there were no guns in those books. I am conflict averse, but this is mostly because I am like the hulk and have no chill. I stood firm on the no gun thing. My editors agreed. The guns were gone. I am forever grateful for those fantastic editors for caring and supporting me. I wish that had also happened to the author in the linked post.
In writer news, TIME STOPPERS, is on sale for $1.99 in November in ebook form so go buy it! My publisher says that people have to buy my books in order for me to be a professional author. Hold on, I’m rethinking that Coke Zero thing. Here’s the link.
Marsie the Cat: Human, I hear you are thinking of abandoning your identity and starting all over from scratch.
Me: How would you “hear” this?
Marsie: Cats are telepathic.
Me: What am I thinking right now then?
Marsie: That you want me to sit on your arm and knead it with my claws until the pain makes you forget that you want to make a whole new identity and then you will be so grateful that you will give me poached ahi tuna and also make the dogs stop raiding my kitty litter box.
Once when I was in college I wanted to die so badly that I stood on Lisbon Street in Lewiston, Maine and tried to decide which car to jump in front of. There were lots of reasons I felt that way at the time and one of those reasons was my seizure medication had thrown my entire body and brain totally out of whack. At one point, I was insisting that elephants were dancing with King Kong outside the window of my off-campus housing.
But honestly? The reasons don’t matter any more. What mattered was the pain. What mattered is that I wanted to die because I thought that I hurt too much to live.
One of my friends, Eric Stamper, got me through it. He was an angel boy.
That and I felt too badly for the driver of the car.
And, yeah, I didn’t want to get paralyzed. The plan didn’t seem fool-proof enough.
And, I also thought about God and life and existence being a gift even if it is a TERRIBLY difficult gift sometimes.
But for five minutes I stood on the side of the road and hurt and thought about ending the hurt and how I could do that without hurting too many other people. I couldn’t think of a way, which is part of why I am still here.
I so rarely talk about this, but lately on social media and the internet, in friends-locked posts and in private messages and in conversations on the phone, I have seen so many people feeling the way I did when I was college student standing on Lisbon Street. I am very lucky. I have never felt that way again, but I remember the feeling. I remember it really well, too well.
And I also realized that it’s hard to talk about it even though so many people have felt that way too. But it isn’t shameful to hurt. It isn’t shameful for the pain to be too much for you to handle alone and anyone who says it is? Well, they are full of crud. Sorry. It’s true.
According to the World Health Organization, over 350 million people on Earth have depression or 5% of the population. A massive chunk of those cases are in the U.S. And two-thirds of those people never get help, or ask for it.
And depression is the leading cause of suicide. And suicide is the third most common reason that teens die.
And I like teens way too much to be cool about letting such a cause of death not go on notice. That’s right… SUICIDE and DEPRESSION! YOU ARE ON NOTICE!
I completely missed suicide prevention day and also To Write Love on Her Arms Day. But on that day, people write “love” on their arms to show that they care, they hope, they support, that they choose not to be silent.
According to the National Survey on Drug Use and Health between 2008 to 2010 at least 8 percent adults (18-22) had a major depression (depressive episode) in the year prior to be questioned. That’s a lot.
To Write Love on Her Arms has raised millions of dollars to try to help.
“To Write Love on Her Arms is a non-profit movement dedicated to presenting hope and finding help for people struggling with depression, addiction, self-injury and suicide. TWLOHA exists to encourage, inform, inspire and also to invest directly into treatment and recovery.”
This is its vision:
The vision is that we actually believe these things…
You were created to love and be loved. You were meant to live life in relationship with other people, to know and be known. You need to know that your story is important and that you’re part of a bigger story. You need to know that your life matters.
We live in a difficult world, a broken world. My friend Byron is very smart – he says that life is hard for most people most of the time. We believe that everyone can relate to pain, that all of us live with questions, and all of us get stuck in moments. You need to know that you’re not alone in the places you feel stuck.
We all wake to the human condition. We wake to mystery and beauty but also to tragedy and loss. Millions of people live with problems of pain. Millions of homes are filled with questions – moments and seasons and cycles that come as thieves and aim to stay. We know that pain is very real. It is our privilege to suggest that hope is real, and that help is real.
You need to know that rescue is possible, that freedom is possible, that God is still in the business of redemption. We’re seeing it happen. We’re seeing lives change as people get the help they need. People sitting across from a counselor for the first time. People stepping into treatment. In desperate moments, people calling a suicide hotline. We know that the first step to recovery is the hardest to take. We want to say here that it’s worth it, that your life is worth fighting for, that it’s possible to change.
Beyond treatment, we believe that community is essential, that people need other people, that we were never meant to do life alone.
The vision is that community and hope and help would replace secrets and silence.
The vision is people putting down guns and blades and bottles.
The vision is that we can reduce the suicide rate in America and around the world.
The vision is that we would learn what it means to love our friends, and that we would love ourselves enough to get the help we need.
The vision is better endings. The vision is the restoration of broken families and broken relationships. The vision is people finding life, finding freedom, finding love. The vision is graduation, a Super Bowl, a wedding, a child, a sunrise. The vision is people becoming incredible parents, people breaking cycles, making change.
The vision is the possibility that your best days are ahead.
The vision is the possibility that we’re more loved than we’ll ever know.
The vision is hope, and hope is real.
You are not alone, and this is not the end of your story.
Crud. Every time I read that I cry.
Please go write LOVE on your arm today, any day, if you feel like it. But more importantly, write LOVE on your heart. Empathy and kindness? They aren’t bad things. Love? That’s even better.
I am pretty open about having occasional seizures, but lately I’ve been thinking a lot about how that aspect of my identity fits in the writing community and I’ve been really inspired by author Mike Jung’s adult autism journey and it’s made me wonder why despite the fact that I’m so open about having seizures, I’m so hesitant to claim that as part of who I am.
And I’ve come to the conclusion that I’m not sure.
My seizure journey is a bit weird. Right before I started college, I had a #metoomoment that left lasting physical consequences. The guy was about to have (or did have) Mono, which meant he had the Epstein Barr virus. He gave that to me. But the virus didn’t just give me Mono. It attacked my brain. I had bullet rashes and seizures that started with my right hand jerking and then my arm and then I would pass out.
It wasn’t the best way to start college but the administration at Bates were outstanding with one dean even volunteering to stay up all night with me to make sure I didn’t fall asleep for sleep deprivation tests.
Eventually, those seizures stopped being multiple times a day to once a week to hardly ever.
And when they did happen, it was usually at night. And when they did happen, I knew it and would say how I felt sort of “wiggly,” which I guess is my code word for seizures.
Despite the fact that epilepsy is commonplace in our society, there is still a feeling of secrecy and shame associated with it. There are still negative stereotypes that exist.
Jenna Martin quotes Bruce Link of Columbia University who wrote “Stigma exists when a person is identified by a label that sets that person apart and links that person to undesirable stereotypes that result in unfair treatment and discrimination.” (Martin 1)
I am a really fully functioning person who has had seizures – so many seizures. The amount of seizures that I’ve had in my past has made me more susceptible to having seizures now, but the virus also caused some cognitive degeneration. It’s not good for a brain to have as many seizures as my brain has had, for that virus to attack it.
“You’ve lost a good 20 IQ points,” my neurologist told me in college and when I grimaced, he sort of laughed and said, “It’s a good thing you started off so high, but I really don’t want you to lose anymore.”
But the thing is? I can tell. I can feel that loss of cognitive ability. All. The. Time. And I hate it.
I also hate the stigma that Link speaks of and that’s why I have been so hesitant to really claim the label.
It is a negative cycle according to Martin and Link. The first step that occurs is that people realize that others are different from them and they give those differences “labels.” Next, the cultural mores determine that those people with labeled characteristics are representative of all people like them, creating a “negative stereotype.” There becomes an “us vs. them” mentality. Finally, those who are labeled become discriminated against. (Martin 1)
Obviously in the United State in 2017, this applies to more than people with epilepsy, but I’m going to try to confine my topic to this stigma here.
By being a successful writer and having a wonderful, eclectic AF life, I am not fighting that epilepsy stigma when I don’t talk about my times with seizures. I have friends who also have seizures and nobody knows except me and a couple other people. They keep it secret, really secret. Why? Because they are afraid of being judged. Because they are afraid of losing a job, not getting a job, not being able to afford their health insurance.
I get that.
One of the happiest things that ever happened when I had a seizure was having the person I was with tell me, “That wasn’t all that big a deal.”
One of the worst things that ever happened when I had a seizure was when someone abandoned me and never talked to me again.
And concussions. Fainting is not as romantic as it sounds when it involves hitting your head on hard surfaces.
There has been a long history of people feeling ashamed that they have epilepsy. Epilepsy was hidden. Epilepsy was a secret. Epilepsy was something to fear. Epilepsy was and is a stigma. But epilepsy has made appearances in literature, which brings us back to books and the power of writing.
It was in 400 B.C. that Hippocrates, a Greek physician, wrote Western civilization’s first book about seizures. On the Sacred Disease was non-fiction. In it, Hippocrates refuted the idea that epilepsy was a sacred power, which had been the thought of the time. He didn’t think it was the work of evil forces. Hippocrates believed epilepsy was a brain disorder.
That way of thinking did not stick, however.
In the Bible, Book of Mark (9:14-29), Jesus Christ rids a young man of epilepsy,
“Teacher, I brought you my son, who is possessed by a spirit that has robbed him of speech. Whenever it seizes him, it throws him to the ground. He foams at the mouth, gnashes his teeth, and becomes rigid. I asked your disciples to drive the spirit out, but they could not.”
In the Bible, to have seizures is to be possessed.
Things got worse for people with seizures. With the blessing of the pope, two friars wrote Malleus Maleficarum, a 1494 handbook on witch-hunting. The handbook influenced the persecution of over 200,000 women. Many were tortured. Many were killed. It was not a good time for women who had seizures, because seizures were identified as a trait of witches. To have seizures was to be a witch. To be a witch was to be killed. Women, children and men who had epilepsy did their best to keep it a secret. If they did not, they risked their lives.
Even as late as the 1900s, people with epilepsy could be banned from driving, sterilized, or prohibited from marrying in some states. In 1980, an Idaho mother lost custody of her child. The father argued the mother was unfit because of her epilepsy. The decision was overturned in 1981. It wasn’t until 1980, just a few decades ago, that Missouri repealed the ban that prohibited the marriage of people with epilepsy.
According to American Steven C. Schachter, M.D., “Epilepsy is perfectly compatible with a normal, happy, and full life. Most people with epilepsy go to school, make friends, date, have jobs and families. Not that it’s always easy. Sometimes coping with the reaction of other people can be the most difficult part of living with epilepsy. Keeping a positive outlook is key. So is a strong sense of self-esteem and independence, with emphasis on abilities rather than difficulties.” (Schachter, Stephen)
That’s how it should be. It isn’t how it is.
Imagine: You’re a man with epilepsy. You go to a pharmacy in a Virginia big box store andwhile you’re there you have a seizure. The store decides you can’t come back. It’s too disturbing for their customers. The next time you go to pick up your medicine you’re arrested for trespassing.
Imagine: You’re a college student in Tennessee. The school administration tells you, that you can’t attend classes anymore because you have epilepsy. It’s not so bad, they say. You can take your classes through the Internet.
Imagine: You’re a Texas woman with a good job, but you lose it once you fill out insurance forms and write that you’re epileptic.
Imagine: You’re the mother of a California preschooler. The school staff refuses to give your child the emergency life-saving medicine that the child might need.
Imagine: You’re a New Jersey man who has a seizure. Police respond to a call for medical assistance. They use excess force to restrain you. You die. (Legal Information about Epilepsy)
So, yeah. I have epilepsy but epilepsy doesn’t have me. And if you are a writer or reader or anyone, please remember that people aren’t defined by their differences. Their differences are part of them, but not all of them.
Link B., Phelan J. Conceptualizing Stigma. Annu. Rev Sociol. 1001; 27:363-85