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Having Epilepsy

 

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.

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 and while 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

Martin, Jenna. “Remembering Danny.” Epilepsy.com. Epilepsy Therapy Development  Project. . 20 Jan. 2006 <http://www.epilepsy.com/stories/ps_1093455944.html>.

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>.

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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.

14 thoughts on “Having Epilepsy”

  1. Hi, Jeffrey. I have. When I used to have seizures in college, I am almost always had post-seizure headaches. I think that it’s really common after tonic-clonic seizures, but I’m not so sure how common it is for partial and other seizure types.

    1. It can. I’m not sure if any two people have the same experience with it. I know for me it made me more stubborn and sometimes more insistent that I had to be independent. Adventuresofstormylee might have a totally different feeling. And I am so sorry for your migraine pain, Jeffrey.

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