Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

The Last, the Least, the Littlest

on June 13, 2013

Epilepsy has been in the media several times this week but unfortunately, it’s been for all of the wrong reasons.

First, Marc Forster, director of the upcoming zombie film, “World War Z” proudly admitted to Film Journal International that he based his depiction of zombie infection on epileptic seizures:

 “I based the zombies on natural biology; I studied insects and how they move, how they swarm. From the moment the humans are bitten, it’s a seizure transformation into becoming a zombie. I did some research on epileptic seizures prior to making the film, and I incorporated this into when humans get bitten, so when someone turns into a zombie their movements are natural, but violent and seizure-like.”

Currently, 80, 95 people have signed a petition on Change.org asking Mr. Forster to apologize for his insensitivity.

Actually, his portrayal of someone suffering a seizure and then being converted to a zombie is more than simply insensitive, it’s literally dehumanizing.

Human beings cease to be human once they experience a seizure in Mr. Forster’s film. Instead, they become monsters.

But it’s just a movie, right? What’s the big deal? No one really thinks that people with epilepsy are monsters.

The big deal is that “World War Z”  will be seen by thousands of pre-teen/teenage children.

What do you think will happen when one of these children has a classmate who has the misfortune of having a seizure at school?

Do you think they’ll be more likely or less likely to feel that their classmate with epilepsy is different from them in a profound way? 

Will it make them more or less afraid of their classmate with a seizure disorder?

Will they be more or less likely to try to help their classmate during and after a seizure episode?

Worse yet, can you hear the cruel taunts of “zombie” coming from the bullies in the classroom?

I can.

For thousands of years, epilepsy sufferers have battled the idea that epilepsy is contagious.

In ancient times, epilepsy was thought to be caused by demon possession. Epilepsy sufferers were made to live alone, even kept away from other inmates housed in insane asylums for fear of spreading their disease. They were kept from attending church and up until as recently as the 1970’s, were not allowed to marry or bear children.

Today, at our local library, I came across a strange and rather disturbing autobiographical graphic novel called “Epileptic” by David B. “Epileptic” chronicles one man’s life growing up with a brother who suffered with epilepsy. In one passage, he writes of how his family decided to move from their home because his brother’s seizures were frightening the neighbors.

pic

That was the 1970’s! 

Not ancient Greece. Not the middle ages. Not the Renaissance.

The 1970’s.

Do you think that in the 40 years that have passed since then we’ve successfully eradicated the social stigma regarding epilepsy?

Think again.

According to a recent study by the organization, “Young Epilepsy“, one in five children with epilepsy in Britain have been accused of being “possessed“. 

One third have been told that epilepsy is contagious.

18% have been asked if they could speak to spirits.

In fact, the biggest risk to young people with epilepsy is lack of understanding

So, in an attempt to increase understanding and hopefully counter some of the negative effects of Mr. Forster’s film, I’ve decided to get a group of concerned individuals and epilepsy advocates together to pass out informational flyers to movie goers on the opening night of “World War Z”. Since the film is primarily aimed at 18-35 year olds, my goal will be to help these young people understand the following:

1) Epilepsy is NOT contagious!

2) What seizures really look like (There are many kinds and often the symptoms are quite subtle.)

3) How to help someone in your school or place of work who is having a seizure

3) Where to go for help if you, or someone you know is diagnosed with epilepsy

Human beings, by nature, fear what they don’t understand. As a result, we ostracize and mock those who are different from us.

For example,  just days ago, when describing dance moves by a radio DJ, singer Robin Thicke commented that the moves were “Fine…for an epileptic.”

Did Mr. Thicke mean to be cruel? Probably not.  In fact, I believe that it never occurred to him that his words could potentially cause harm to anyone because it’s still perfectly acceptable in this day and age to make fun of people with epilepsy.

Can you imagine someone mocking a child with cancer? Or diabetes?

And yet, when I referenced Mr. Thicke’s comment on my Facebook page recently and called the remark “insensitive”, several people accused me of overreacting.

“What’s the big deal?”, they asked.

“It was just a joke.”

“It was meant to be fun.”

If you’ve been following this blog for any length of time, you already know that there’s nothing “fun” about epilepsy. 

Having epilepsy isn’t fun. Having a child with epilepsy isn’t fun. Having your brain hijacked by seizures that can occur at any moment with very little or no warning, losing control of your body, losing consciousness, being discriminated against, being the brunt of jokes, having people tell you that your condition is contagious when it isn’t, being accused of demon possession, being called a “retard”, “mad”, “not right” (We can add “zombie” to that list now, thanks to Mr. Forster), being rejected by your peers-

None of that is what I would call “fun”.  

I guess I lost my sense of humor about epilepsy right around the time I handed my baby over to a surgeon so he could remove half of her brain in one of several desperate attempts to stop intractable seizures.

Joscelyn has been through so much in her young life. Within the four walls of our home, she is safe, she is loved and she is accepted. I know that I can’t force the rest of the world to accept her and I can’t protect her from every  insensitive comment or comparison, but I can (and rest assured I will) continue to speak up on her behalf and on the behalf of the 300,000 other children under the age of 15 in the U.S. who suffer with epilepsy.

“Any society, any nation, is judged on the basis of how it treats its weakest members ; the last, the least, the littlest.”-Cardinal Roger Mahony

Surely we can find humor and entertainment elsewhere than at the expense of our weakest members.

We can do better.

We must do better.

 

 
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24 responses to “The Last, the Least, the Littlest

  1. Steve Lowe says:

    I applaud you for all that you do for epilepsy awareness. I am a perfect example. If it weren’t for friending you on facebook I never would have been aware of the extent of epilepsy in the world.You know I am not the kind of person who would ever be insensitive or purposely ignore the suffering especially in little children, but at the same time I would have been oblivious to what goes on around me because I had never been touched by some one who had this going
    on. So again I have to thank you for opening my eyes and for being an inspiration to so many.

  2. Lisa Melton says:

    Jennifer I again find myself indebted to you for educating me. Recently I saw the quote, “Instead of being opinionated, try being informed”. I tell my children that knowledge is power, more powerful than money or any tangible thing on this earth, so I am blessed to be able to pass this on to them in hopes that there will be two more compassionate human beings on this earth. Since it is important to leave something good behind in the hopes that you leave this earth a better place than when you entered it, you have provided a very stable launching pad by sharing your life and I thank you from the bottom of my heart. Big Hugs to you and your family!

  3. A dear friend of mine was having seizures due to a terminal brain tumor. She wanted to be as normal as she could and She spent her last year on earth living and being cared for by me and several other of her girl friends who came to help. We lived on the Oregon coast at the time. Often she would have one of her seizures while we were down on the beach. Thankfully, many kind strangers would stop by and offer to help in what ever way they could. Once they understood what was happening, they found that their compassion always trumped their fear of the unknown or strange. As more people get educated by the people around them who know first hand what is happening and that this calls for understanding, kindness and compassion as a response, there will be less tolerance of stupid, uninformed fear and making insensitive jokes. Besides being a loving support to Joss as she learns how to navigate human experiences with her special challenges, you are a sister guide to all of us, strangers, friends and foe alike. We would all be lesser without you and your awesome gifts and humor. Thank you for being there in the way that you are. Thank you for your patience with us all!

  4. Andrea M. says:

    I applaud you for taking a stand and defending the powerless through education. Bravo and God bless you, my friend!

  5. Mariellen Barr in PA says:

    I’m so thankful that you shared this about the movie. I would not want to pass it off as some benign film unknowingly. And I am also more educated as the previous people have shared-because of your blog. Thank you.

  6. Patricia Brandt says:

    I would like to see Brad Pitt speak about this…he stars in the film and seems like a compassionate person who would be appalled at the director’s remarks. You should send him a copy of this blog as he has a very large following and could reach many people with the message.

  7. Nancy H says:

    body{font-size:10pt;font-family:arial,sans-serif;background-color:#ffffff;color:black;}p{margin:0px;}

    Very well written. A wonderful message that I hope makes the impact it deserves to make.   Nancy Harry  

  8. I would love to talk to you about this and other things please contact me! Stupiddumbbreastcancer@gmail.co,

  9. Carla says:

    Now I don’t feel so bad about disliking Gwyneth Paltrow (whom I used to adore) since she said that putting Alka Selzter in her mouth and acting out seizures in “Contagion” was “fun.” My argument, much like one you made: no one says that acting out a barfing scene in a sad cancer story is “fun.”

    You never cease to amaze me; with all you have on your plate, you are squeezing in a much-needed (by say, our government!?), condensed Epilepsy 101 for our under- and misinformed neighbors. Carry on, Queen Warrior!

  10. Absolutely brilliant post.Well thought out. Right on the money. Will be sharing.

  11. Nonnie says:

    I also will be sharing. I continue to pray daily for Joscelyn. My younger brother had his first seizure in my husband’s and my home when he was 16. If he ever had been bullied because of epilepsy, he never shared that with me. I remember that he couldn’t get his driver’s license till he went one year without a seizure. I also had a teacher friend who had petit mals, so not so noticeable. Bullies come in many guises, and it’s sad when one presents facts to the public that one has no sense of humor. I find less and less in movies to invite me to their theaters to view stupid ideas of entertainment, and…it’s hugely expensive.
    I think your post will affect those who are brave enough to think for themselves.

    • Thank you for your sharing your experiences, Nonnie! We appreciate your prayers so very much and know that they are making a difference! Hopefully, if we keep talking about epilepsy, we can eradicate the stigma and myths that continue to surround this condition.

  12. My daughter passed away last September from a epilepsy seizure in her sleep. Very sad and more research needs to be done. She had told me that she thought she was having seizures in her sleep because she would wake up with her muscles so sore.

    • I am so very sorry, Charlotte! You have been in our thoughts and prayers. You’ve endured so much pain and loss in such a short time. No mother should ever have to say goodbye to her children. I emphatically agree that more research is desperately needed into epilepsy and SUDEP. I read a study recently that said that many parents with children diagnosed with epilepsy were never told by their doctors about the risk of SUDEP. Thank you for reaching out to us and sharing your story. We send you strength and love!

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