Internationally Bestselling Quirky Children's Books; Adventurous Heroes Doing Good
Author: carriejonesbooks
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.
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.
Me:
Marsie: What? Are those not your thoughts?
Me: I think those are your thoughts, buddy.
Marsie: My thoughts should be yours. I am cat.
Me: Maybe my new identity should be cat.
Share this if you want and also because it would be super nice of you!
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.
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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!
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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.
And if you’re feeling like you need help, this brings you to a links page for resources in the U.S., Canada, Australia, the U.K., Sweden, and Belgium.
Share this if you want and also because it would be super nice of you!
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 #metoo moment 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.
This is my first book. The main character has seizures.So how does this relate to being a writer and labels and discrimination? I’m honestly not 100 % sure. I know that when people talk about being a disabled author, I don’t think of myself. I know that when people post stereotypes or negativity about people with epilepsy in their family, it takes a hell of a lot for me to confront them about it, but I do and afterwards I feel … panic. Because their worries/fears about their family member’s health tends to be more important to them than the stigma they are reinforcing. Or, when people ask me about epilepsy in a book and I say that it’s a trope that’s happening or a stereotype, they ignore it and win awards.And yes, this is partly my fault.My disability is hidden and I let it stay that way because I don’t announce it very often. I don’t claim it much anymore. And you know what? That’s wrong. It makes me a coward. Other people dealing with discrimination and oppression don’t have that luxury.
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
I am the internationally and New York Times bestselling author of the Need series, Time Stoppers series, Flying series, Dear Bully, and also some other young adult novels and picture books about unconventional spies. But seriously? Are any spies conventional?
Mostly, I am just quirky. I’ve tried to fix this. I failed.
