I only hated two professors in college. One because he was misogynist buttface who only liked guys and was openly derisive about women being incapable of creating art because we were busy “focusing on making babies.” I walked out of his class after yelling at him for a good three minutes.
Most people think I am mellow. I am not mellow. Sometimes, I have no chill. This was one of those times.
I was the only woman in that class. My boyfriend was in that class. Two other guys were in that class. Nobody else walked out. Just me.
The other professor taught poetry and liked to tell students that they weren’t real enough or raw enough. She wanted pain. She wanted authenticity. She wanted confessional poetry and most of us just sort of wanted to write about white baseball caps, rainbows, and dolphins.
In retrospect, I sort of feel badly for her because I probably would have gotten frustrated about all those poems about white baseball caps, rainbows, and dolphins, too.
But still. It was what we were right then, a lot of us – baseball caps, rainbows, dolphins.
And the rest of the professors? They were amazing. I had really great professors in theater and poetry even though I was a political science major.
Here’s a letter I wrote to one of them recently when he retired from teaching. I was thinking about this a lot after I reposted my Seamus Heaney blog.
Dear Professor Farnsworth,
I don’t think you will remember me, but I will always remember you because you, your class, and poetry helped save me in a time of my life when salvation seemed highly unlikely.
I spent most of my time at college sick with seizures caused by an Epstein Barr virus that had attacked my brain. I spent most of my time wondering who I was, how I could fit in, and what my voice could possibly be when my broken brain was no longer my own.
You helped me reclaim my voice, but more than that? You helped me expand it.
I was not much of a poet.
I am still not much of a poet.
You had such a voice.
Resonant, understanding, persistent, encouraging.
You read my poems, all our poems – even the ones about vampires, and taught us that even if we didn’t know our voice right then, our voice would find us if we gave it space and attention.
Space and attention.
Space and attention and intention.
Those very same things that you gave to us.
You are one of the best teachers we could ever know.
You taught us to build up ourselves and our poems, to construct our stories and our voice, piece by piece, word by word, symbol by beautiful symbol. You taught us to craft our poems and our lives with patience and love and strength.
Add insight? And that is what you, Robert Farnsworth, represent to me. Patience. Love. Strength. Insight.
Your legacy is huge and important and ripples into so many other lives? So many lives…
You have helped us to become.
Thank you. May your next stanza of becoming be as beautiful as this one has been.
DO GOOD WEDNESDAY
Write a letter to someone who made a difference in your life. Send it.
I am super excited about the upcoming TIME STOPPERS book coming out this August. And honestly, if you want to help me feel less stressed about failure and the writing world, leaving a review for the books and buying them? That is the best thing you can do for me.
This middle grade fantasy series happens in Acadia National Park in Bar Harbor, Maine and it’s all about friendship and magic and kids saving their magical town.
An imaginative blend of fantasy, whimsy, and suspense, with a charming cast of underdog characters . . . This new fantasy series will entice younger fans of Harry Potter and Percy Jackson.” – School Library Journal
“Sticks the landing . . . The world building is engaging . . . between the decidedly wonderful residents and the terrifying monsters who plague them.” – BCCB
“Amid the magic, spells, adventure, and weirdness of this fantasy are embedded not-so-subtle life lessons about kindness, friendship, and cooperation.” – Booklist
For a complete round-up of my 16-or-so books, check out my website. And if you like us, or our podcast, or just want to support a writer, please buy one of those books, or leave a review on a site like Amazon. Those reviews help. It’s all some weird marketing algorhthym from hell, basically.
OUR PODCAST DOGS ARE SMARTER THAN PEOPLE.
Thanks to all of you who keep listening to our weirdness as we talk about random thoughts, writing advice and life tips.
Because my family is a bit – um – all over the place, I ended up having multiple grandmothers when I was growing up. I had a Nana, a Grammy, and a Avó or Vovó. And every single one of these women was eccentric and radically different from each other.
One had the worst funeral ever. Unless you count the funeral where my aunt passed out and everyone thought she died.
I’m not counting that one.
Or the one where I had a complete #metoo moment. That was my dad’s funeral actually.
I’m not counting that one either.
Anyway, about my grandmothers.
One grandmother was the chairwoman of the Republican women’s party in our state. She believed in manners, in propriety and responsibility, and all that stiff-upper lip stuff. She drank alcohol once every five years or so, on Christmas. She wrote one poem.
One grandmother was an artist and poet who never let the world see her art, who cried over the beauty of a ripe tomato. She believed in prohibition, probably because her husband forced her to believe in prohibition. She also believed in Julia Child.
One grandmother was a collector of all things ceramic, lover of all things Bingo, and could not care about ‘propriety’ at all. She drank. She never wrote a poem. She lived one. Some of the lines were flawed, but it was real and raw and authentic.
These ladies didn’t interact much. They are all dead now, but the one I’m thinking about is my nana and what writing lessons I can get from the life she lived and the funeral she had.
My nana basically had the worst funeral in all of history. Or… well… she’s in the top three for my family funeral disasters.
Oh, let me count the ways. Learn from this, writers, okay?
The setting was bad
They put all of us closer relatives in a family grieving room before the funeral started, but the room was the kindergarten room for church school and so the whole thing was filled with a giant table and church muppets. People sort of had to stand with their backs flat up against the walls like a police line-up. When new people came into the room, everyone would have to do this sideways shuffle scooch along the walls to make room.
The church muppets were all flopped on top of each other and it looked really naughty. My nana would not have approved. I made Jesus muppet hold hands with Minister muppet because they looked lonely.
It wasn’t a place or setting where emotional resonance could happen. It’s hard to comfort other people or even be super introspective when your back is to the wall and you are staring at puppets who look like they might be trying to make muppet babies.
Know Your Main Character
My nana was 100 when she died. She was a really smart woman. You’d go to her house and she’d have a newspaper clipping for you and she’d be like, “Have you seen this censorship issue that the American Library Association is lobbying against?”
Or she’d be like, “Did you know that Medicare is (Insert large word)?”
She went to this same church that her funeral was at for about 8,000 years.
But the minister’s sermon was all, “Think of the things Rena saw change in her 100 years,” which is nice, but it was like a history lesson.
A history lesson! Ugh. And I kind of wanted it to be personal, not a eulogy you can use for anyone over 98. But that’s what it was.
In a book, you have to know your main character inside and out or else their story doesn’t mean anything. That’s what happened here, too.
Instead of hearing about my nana and her life and her interactions with everyone and with the church, it was a sermon about… history? Full of random dates and events but with no actual human content. Her life as told in his sermon didn’t exist.
Our lives and our characters’ lives have purpose. We aren’t just meant to be a backdrop for a history lesson.
Random Characters Thrown In For Effect
Part of my family looks like they belong in the Jersey Shore. Seriously, my nephew Brooks saw someone and screamed, “OMG! It’s Snooki!”
Funerals are often places where families see branches that they forgot about or have deliberately avoided for years. That’s okay in a funeral, but in a book? Characters need to have a purpose.
Lack of Emotion
Nobody sobbed. There should be sobbing at a funeral, but I guess since it was History Lesson Funeral, people just took notes, worrying about the test later or something.
People loved my nana. They missed my nana. My family is a high-drama, emotional family that sobs at anything. But here? It didn’t happen.
In life and in books, you have to be able to have the space for sorrow, you have to have an emotional aspect to a story, to understand their worries, their drives, to know that their departure would leave a gaping hole.
That doesn’t happen with bad writing or bad preaching.
The only time emotional resonance happens during a history test is when you realize you’re going to fail it, honestly.
Don’t make your life or your book a history text.
Sometimes Following The Rules Isn’t Healthy
I had to sit in the front row so the minister kept looking at me, which meant that I had to pay attention to the history lesson and nod appropriately, which would have made my nana proud I’m sure.
But following the rules and doing the proper expected thing isn’t always healthy for you. Crying can be good even if it isn’t at the ‘socially acceptable’ time.
And I guess that’s why I’m sad. I wanted my nana’s funeral to make her proud of the life she lived and of all of us people she left behind. I wanted to feel some sort of closure, but I didn’t. I just sort of felt like someone had forgotten to pick her up and give her a ride over.
My nana loved for people to give her rides. She also loved to food poison people with dairy products, talk politics, play cards, get angry at you for beating her at cards, talk on the telephone, and hang out with her friends. She was smart and lively and stubborn and an absolutely horrible cook.
When I asked her why she was so involved in politics she said, “Because I remember what it was like to not even be able to vote.”
She was ten when women got the right to vote.
“It meant something. Women are just as good as men,” she said. “If not better. Stronger. They didn’t let us use our minds.”
She was the valedictorian of her little class in Weare, New Hampshire. She wrote a poem in her yearbook. She was proud of it, but (unlike one of my other grandmothers) it was pretty much the only poem she ever wrote. She didn’t have time for that, she’d said.
When I asked her why she was so smart, why she spent so much time learning and understanding things, she’d said, “Women can’t afford not to be intelligent. Not in this world.”
And another time she said, “It’s our responsibility to learn everything we can learn, to make good decisions, informed decisions.”
A farm girl, she’d married a jazz drummer who played in big bands and toured the country. One time he didn’t come back. He remarried. She never did. I don’t think she ever even dated anyone, but she did think Ronald Reagan was a ‘looker.’
She raised her kids as a single mom back in the 1940s and 1950s. Her oldest son went on to desegregate the fraternity system at UNH and though they were desperately poor, he ended up a valedictorian at his high school, at UNH, and then went on to Harvard Law.
She was so proud of him. Why?
“Because he is a gentleman and because he can think,” she said once when we were sitting on her couch and I was trying to avoid eating any of her food because – food poisoning. And then she said it again, “He can think. So can you. Use your brain, Carrie. Use it. Don’t be afraid of it.”
My nana was pretty cool, and worth way more than a history lesson. She was an epic, a woman of resilience and persistence in a time that was hard.
“All times are hard,” she’d say.
And this, also, is true.
But all times also have beauty and good and resonance. Don’t be afraid to embrace that, too.
This is my nana. She is 100 here. She would hate this picture. 😉
Do Good Wednesday
I have had seizures.
It started when I was in college and I had Mono. The Epstein Barr virus that causes Mono attacked my brain as well. Eventually, the virus left, the seizures lessened, but it made my brain less resistant to future seizures.
There are all kinds of seizures and all types of triggers for people and all sorts of degrees of severity. Epilepsy is the fourth most common neurological condition and in the United States, 3.4 million people have epilepsy.
That’s a lot of people and yet there is a ton of stigma about it. So, my Do Good Wednesday call is just this. Go check out this website. Learn a little about epilepsy. Don’t be afraid when someone has a seizure. If you are a parent or a loved one, don’t make it all about you if a loved one has a seizure.
Yep, it’s the part of the blog where I talk about my books and projects because I am a writer for a living, which means I need people to review and buy my books or at least spread the word about them.
So, please buy one of my books. 🙂 The links about them are all up there in the header on top of the page. There are young adult series, middle grade fantasy series, stand-alones for young adults and even picture book biographies.
Last week, I got the first pass proofs of ESCAPE FROM THE BADLANDS, the third book in the TIME STOPPERS series.
I am afraid of pass proofs.
But they are still super cool.
Why am I afraid of them?
Well, they come after the copy edits, so even if you suddenly realize that having your main character fall in love with a bottle of ALL NATURAL SNAPPLE ICED TEA was important to the plot of the book, you can not magically make this happen now. It is too late!!!!
Snapple: Is it ever really too late to make SNAPPLE an important plot choice/love interest? I doubt it.
Yes, Snapple! It is too late.
Why is it too late?
Well, the first pass proofs are really what the book is going to look like on the page. It’s sort of all set and ready to go.
And that’s scary. Your book baby is ready to go off into the world of anonymous reviews and bookstore shelves, and there is nothing you can do now to toughen her up, make her street smart. She will be out there on her own very very soon and you just have to pray she won’t be a train wreck and become the kind of book that the paparazzi take pictures of because she’s always forgetting to wear her underwear when she gets out of cars.
And all of this made me think about vulnerability.
Because writing a blog, a book, a podcast, creating art, any type of true communication and art is an act of expression and it makes you vulnerable. And this world? This world is currently full of people who attack others. Some of those attacks are horrific and visible. Some are hidden.
So, why do it? Why do anything?
Because if you don’t, the trolls win.
Because if you don’t, fear wins.
Because for every troll attacking you, there is someone who needs your story and your voice. That’s why.
This is why you should still be vulnerable despite the evil in this world. Ready?
Vulnerable People are Leaders
People who lead need to connect to others. Vulnerability and authenticity are ways of connection, ways that we break out of our comfort zones and reach for bigger, better things.
Vulnerability Helps Others
Almost every time I blog or post about something that isn’t considered cool, (Having epilepsy, growing up poor, sleeping in a car, being assaulted), people tell me that I’m inspiring. I sure don’t ever feel inspiring. At all. And I have a hard time accepting that compliment, but… I appreciate that kindness because it means that it means those people are getting something positive out of my life or what I’m saying.
Plus, how cool is it that they took the time out of their lives to deliberately say something kind and supportive.
Can there be a bigger gift than hearing that you’ve helped someone else? Somehow? Even though you were just being you.
Vulnerability Is Contagious
Being brave and exposing yourself and your truth? It helps others be brave. Sure, it can backfire. When I first posted about my daughter being worried about me going to the Boston Marathon, trolls said my daughter (who is a Lt in the Army) must be a terrorist and have known about it or else why would she be worried about me. Yep… They actually went there.
And that’s the thing. You never know when someone is going to attack you or what for, but you can’t let that fear of evil suppress your voice, your story, your thoughts or your truths.
Silence is oppressive.
But vulnerability? It’s contagious.
Telling your story gives strength to others who haven’t been able to tell theirs yet. Facing your demons helps others to face their own. Isn’t that the kind of infection we want? Instead of a lack of civility and a parade of trolls, how about we work towards authenticity and vulnerability and truth?
A vulnerability contagion…I think that would be pretty cool. So, today’s Wednesday Writing Wisdom is to be vulnerable. No art is any good without it.
I’ll be at Sherman’s Bookstore in Bar Harbor on April 28 from 1-2.
To find out more about my books, there are links in the header. And if you buy one? Thank you so much. Let me know if you want me to send you a bookplate.
The podcast DOGS ARE SMARTER THAN PEOPLE is still chugging along. Thanks to all of you who keep listening to our weirdness. We’re sorry we laugh so much… sort of. Please share it and subscribe if you can.
COOKING WITH A WRITER
I have started a tongue-in-spoon subgroup in my blog all about cooking vegetarian recipes as a writer. It is silly. The recipes still work though. Check it out here.
THE CLASS AT THE WRITING BARN
The awesome six-month-long Writing Barn class that they’ve let me be in charge of!? It’s happening again in July. Write! Submit! Support! is a pretty awesome class. It’s a bit like a mini MFA but way more supportive and way less money. We’ll be having a Zoom class to learn more about it and I’ll share the details as soon as they are official.
FLYING AND ENHANCED – THE YOUNG ADULT SCIENCE FICTION SERIES
These books are out there in the world thanks to Tor.
What books? Well, cross Buffy with Men in Black and you get… you get a friends-powered action adventure based in the real world, but with a science fiction twist. More about it is here. But these are fun, fast books that are about identity, being a hero, and saying to heck with being defined by other people’s expectations.
This quick, lighthearted romp is a perfect choice for readers who like their romance served with a side of alien butt-kicking action –School Library Journal
I don’t usually write about the bad things that have happened to me.
That’s a choice I deliberately make that has nothing to do with other writers and their choices. It’s just about me.
I don’t usually write about the bad things that have happened to me because I don’t want them to define me. I want people to meet me, Carrie Jones, and not think about my past, or things I’ve battled. I want them to just see me. I don’t like pity. I really don’t like stigma. I like to just be my goofy, quirky, flawed self.
And tonight I don’t get to do that.
That’s because I made a choice to be a part of THINGS I HAVEN’T SAID, an anthology for teens about surviving sexual assault. I made a similar choice when I edited DEAR BULLY and wrote about being bullied for my voice. That bullying is part of the reason I get so stressed about our podcast. I still have people mock my voice. Adults.
But both of those times, I made the choice that makes me uncomfortable because I believed it was for the better good. I made those choices because stories of surviving and eventually thriving need to be out there. My sexual assault gave me mono. The Epstein Barr virus that causes mono attacked my brain causing cognitive degeneration and seizures. I live with the knowledge that I used to be smarter, more articulate, with a better memory. I live with the knowledge that this changed because of what someone did to me.
And I thrive.
It resurfaces. There is still frustration and annoyance and pain.
But I thrive.
I even get hugged.
And that’s why when someone like Erin asks me to help kids by sharing my story? I do it. Even though I don’t want the labels, or to be defined by the things that were done to me. I want to be defined by the things I do, the choices I make, the stories I write.
There’s power in that.
But anyway, THINGS I HAVEN’T SAID is out now. I’ll be in Exeter, NH tonight at Water Stone Book Store at 7 p.m. as part of a panel. I’ve never been so afraid of being part of a panel before. Ever. But the proceeds of books sales go to HAVEN, that serves women, men and children affected by domestic and sexual violence and tries to prevent violence.
That’s a big deal. Come hang out. Help me be brave.
Don’t let one attribute define the character. An author can’t make a character’s one attribute be that she has seizures any more than the author can make that character’s one attribute be that she is only her race or only cranky or gay or hearing-impaired or short or really into ping-pong, so into ping-pong that she only refers to it as table tennis.
What did the nurse do when she saw that her patient was having a seizure in the bathtub?
She threw in the laundry.
-Common epilepsy joke on the Internet
Lovely, right? Dehumanizing. Who cares if the patient drowns. The laundry is more important.
Don’t Let One Attribute Define an Entire Character
It’s the same as creating any character. Don’t let one attribute define the character. An author can’t make a character’s one attribute be that she has seizures any more than the author can make that character’s one attribute be that she is only her race or only cranky or gay or hearing-impaired or short or really into ping-pong, so into ping-pong that she only refers to it as table tennis.
Some authors use sketches to create a full character, asking themselves questions such as: What does my character want? How old was she when she crawled? What was the worst thing that ever happened to her in kindergarten? Does she like hot dogs and if not, why?
Characters always need to be well rounded, whether they have epilepsy or not.
“A helpful concept to remember when developing characters for a story is that, as in real life, they should exhibit a mosaic of overlapping, sometimes contradictory traits.” (Epstein 56)
I was at my in-laws house and several teenage cousins were sitting in the living room watching television. Someone was dancing poorly on the sitcom they were watching.
“Oh my God,” one of the girls said. “It’s like she’s having a freaking seizure… look at her.”
“What a spaz,” another girl said.
2. Be Aware of the Stereotypes
Writers can and should incorporate characters with epilepsy and disabilities into children’s fiction and they can do it without perpetuating negative biases against people with disabilities. To do so, authors must be aware of the stereotypes, write against the stereotypes, and create well-rounded characters.
Yeah, I’d like it if tv writers did it as well. But, right now, I’ll take what I can get.
My daughter Emily snuggles into her bed. She stares at me, smiles, pulls me down into a hug and says, “Mommy, I wish you didn’t ever have seizures.”
“Yeah, me too,” I say and smell her hair, which reminds me of bananas.
“It’s not a big thing, though, right?”
Her eyes are teddy bear sweet and her fingers twirl a piece of my hair.
“Nope,” I say. “Not a big thing at all.”
Do a web search on fictional children’s books dealing with epilepsy and you don’t come up with much. Even epilepsy foundations have meager resources for picture book fans. Epilepsy.com lists just eight books that deal with epilepsy in a fictional narrative. Yet, at least 300,000-plus American children with epilepsy have friends and schoolmates. Not many of those children connect with books that deal with the subject.
A majority of books that do exist for children have their characters whose development comes from growing beyond a negative stereotype of someone with epilepsy.
What I’m wondering is why?
In her paper, “Portrayal of People with Disabilities in Children’s Literature: 1940s to 1980s” Maeleah Carlisle wrote, “Children’s literature often reflects the current society’s values and attitudes.” (1)
That is true today.
It is no wonder that many authors use negative epileptic stereotypes for their protagonists. Most people have slight understanding of the disorder. Is this true about other conditions? Other disabilities?
In a paper about epilepsy and stigma printed in the Journal of Epilepsy and Clinical Neurophysiology, the scientist’s conclusion was, “Stigma not only coexists with lack of information, but also with inappropriate behaviors .” (Fernandes 213)
Children’s authors have been unintentionally perpetuating those stigmas. But the lack of literature itself is also perpetuating the silence around conditions and disorders. This is troubling because “Children’s literature can inform and influence children’s images of people with disabilities.” (Carlisle 5)
Colin Barnes and researchers Biklen and Bogdan illustrated multiple ways in which literature and the media stereotypes people with disabilities. Those stereotypes also exist in children’s literature .
Those stereotypes include:
Person with disabilities is pitiable.
Person with disabilitiesis the helpless victim of violence.
Person with disabilities is evil.
Person with disabilities is saintly, godly, a superhero. Some sort of extraordinary trait occurs to make the reader love the epileptic champion/hero.
Person with disabilities is worthy of ridicule.
Person with disabilities is “own worst enemy.” They could get better if they would just take their medicine, not drink, etc…
Person with disabilities is a burden. They are a drain on their parents’ emotions, money, time.
Person with disabilitiescan’t live a regular life with normal activities. (Biklen and Bogdan 6-9; Barnes 2-7)
In examining the existing children’s literature, I found that in most books the protagonists’ character development hinged on breaking free of the stereotypes of epilepsy. This is also somewhat true of other disabilities, but not always. It’s the “not always” that gives me hope.
While at Vermont College in January 2006, I told fellow students my thesis topic.
“Wow,” they said.
Then they’d usually nod and something would shift behind their eyes. They would pause, maybe bite their lips, maybe look to the side and then almost every single one of them asked. “Why are you so interested in epilepsy?”
“Because I have seizures,” I said.
“Oh,” said one.
“Really,” said another.
My favorite person? She just nodded and said, “That’s cool.”
3. Do Whatever You Can To Understand Epilepsy
If you are writing about an experience outside of yourself and that experience is often used to ‘other’ people in a really bad way, you need to put in the work so that you don’t reduce your characters, so you can get your head into a space that is close to empathy and understanding.
What’s it like having seizures? It’s not really like anything for me. It just is. But my experience with epilepsy isn’t everyone’s experience with epilepsy and that’s important to remember. There’s no one way to have epilepsy or autism or diabetes or anything. There is no one way to be.
I sort of hate referencing my own life and books when I post about things, because it always seems so self-serving, but when I wrote TIPS and the sequel, LOVE AND OTHER USES FOR DUCT TAPE, I wrote them because I wanted to have REAL characters with complicated problems and complicated thoughts and complicated personalities. My daughter, Em, was begging for this. But something inside of me was begging for this too. I wanted to write a book where someone had seizures, but it wasn’t the end of the world, it wasn’t what defined them, it was just something about them, just like it was something about me.
Author Rick Riordan said in our correspondence, “As far as why is it important to have characters with differences, again I had a very personal reason. I wanted my son to relate to the hero and feel better about the learning problems that were causing him trouble in school. It’s also real life to have lots of different kinds of people, and it can make for richer writing.”
That’s so important. It’s something we’re still learning in so many ways. All of us.
Biklen, D. and R. Bogdan. “Media portrayals of disabled people: a study in stereotypes.” Interracial Books for Children Bulletin. 8: 1977, 4-9.
Carlisle, Maeleah. “Portrayal of People with Disabilities in Children’s Literature; 1940s to 1980s.” Beta Phi Mu — Chi Chapter. 1997. Indiana State University. 24 Jan. 2006 1987
Fernandes, Paula. “Stigma Scale of Epilepsy:Conceptual Issues.” Journal of Epilepsy and Clinical Neurophysiology 3 Dec 2004. 21 Jan 2006 <http://www.epilepsia.org.br/epi2002/JEp213-218.pdf.
Jacoby, Ann. “Public Knowledge, Private Grief: A Study of Public Attitudes to Epilepsy in the United Kingdom and Implications for Stigma.” Epilepsia Nov 2004. 21 Jan 2006 <http://www.epilepsia.org.br/epi2002/JEp21http://www.blackwell-synergy.com/doi/full/10.1111/j.
Martin, Jenna. “Teens with Epilepsy: Living with Stigma.” Epilepsy.com. Epilepsy Therapy Development Project.. 20 Jan. 2006 <http://www.epilepsy.com/articles/ar_1089388403.html>.
Mellon, C.A. “Evaluating the portrayal of disabled characters in juvenile fiction.” Journal of Youth Services in Libraries. 2(2): 1989, 143-150
What is it about you that you don’t feel like people don’t understand? That they make into a stereotype?
How can you show someone that you see them? What can you do to see them better?
Random Other Writing and Work News:
The pub date for THINGS WE HAVEN’T SAID, is March? You can preorder it here or anywhere. It’s an anthology that I have a piece in.
I’m starting a podcast. The landing page will be here and also on my website and in all those typical podcast places, hopefully. It will be raw. It will be quirky because seriously… look at me… I don’t know how to be normal.
I am incredibly terrified about this podcast. So, please leave a review once you check it out.
Also, on my website are the stories of how my books like the NEED series or TIME STOPPERS came into being, how I paint to get more into my stories, or more info about me and all that stuff that’s supposed to be on websites.
My nonfiction picture book about Moe Berg, the pro ball player who was a spy, is still coming out March 1 and I’m super psyched about it. You can preorder it.
And there you go, Friday’s blog post. Please let me know here if you can (and not just on Facebook) if you’ve checked it out. I hope you have an amazing, wonderful weekend where you shout out who you are to the world and the world loves you for it.
One day I was hanging out in the hallway of the middle school with some other moms, waiting for all the sports practices to be over so we could shuttle our kids home.
These two other moms standing next to me were talking about diets and diabetes. They were both on Weight Watchers. One mom has lost tons of weight. The moms talked about the effect of weight on piercing private places and all this incredibly personal stuff.
Then they started talking about sugar and sugar substitutes (Splenda and aspartame).
One mom goes, “That aspartame. I stay away from that stuff. It makes the back of my throat feel funny. I think it does something to rats.”
So I say, “Aspartame gives me seizures.”
And I add, “So does coffee.”
I swear both their mouths dropped open and they both actually stopped talking, which was a big deal, because they NEVER stop talking. I love them. I love their talking, but yeah . . . they are super good at it.
And when their mouths dropped open, I realized: You can talk about your diabetes, your husband’s joy stick, your own special piercings, your kids’ bed wetting, but you can’t talk about epilepsy.
And, this just totally sucks.
Because, I’m someone who is really, really lucky. I know what makes me have seizures so I avoid those things (Truth Alert: It does suck to give up beautiful caffinated coffee and gum), but other people aren’t lucky at all. About one person in every 26 will have epilepsy at some point in his/her life. And they don’t always have the choice of disclosure, and they just have the stigma.
So? What does this have to do with writing?
Lately, I’ve been thinking about the choices I made with Belle, the protagonist of Tips on Having a Gay (ex) Boyfriend. I made her a folk singer for important reasons. I also gave her seizures, the same kind of seizures I have, caused by the same thing.
Her epilepsy is not a part of the plot. It’s not a part of the character development. But it’s there.
And, no matter how bad my book is, or how good, or if anyone buys it, or doesn’t, or awards it won, I am really, really glad I made that choice for Belle.
Choices are important in our lives and in our books. It’s the choices we make that inform the people we are, and also inform the characters we right. That’s pretty cool.
Like Sparty says, choose to grow, be broad, celebrate your next choices, listen to some awesome tunes. Be the person, the writer, the character you want to be. No matter what stigmas hold you back. You’ve got this.
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