NaNoBlogMo 11: National Epilepsy Awareness Month

https://endepilepsy.org/

It seems like you can hardly turn around on the internet these days without bumping into a “Month of” of some kind.

We have months for Obesity Awareness (September), Pet Adoption (October), and Home Ownership (June.) Cancer is especially popular in the “month” category, with Cancer Prevention (February), Brain Cancer (May), and Cancer Survivors (June) all getting months of their own. These, of course, are all dwarfed by the 800-pound gorilla in the “cancer month” room, Breast Cancer Awareness Month in October, where you can’t open your eyes without seeing a pink ribbon.

But I normally sort of keep myself out of the whole “month of” thing. There are just too many causes to keep track of, too many things I could be paying attention to, to feel like any one of them deserves more attention than the others. Pick a cause you care about, I tend to think. Work diligently on behalf of that cause all the time. Pay no attention to what month it is.

Then November rolls around, and all my logic flies out the window. There are two BIG barn-burners of causes that I care about that take place during the month of Turkey Day. And I would be remiss if I didn’t chat a bit about them.

The Epilepsy Imbalance

So, how many people do you think will suffer from breast cancer in the upcoming year? (Stick with me, there is a point coming.)

In the United States, over a quarter of a million women suffer from breast cancer annually. Of that 250,000+, more than 40,000 will die from the condition. Over 3.1 million women total have a history of breast cancer in the United States. (All statistics courtesy of www.breastcancer.org)

Now, off the top of your head, how many people do you think suffer from Epilepsy in the U.S.?

About 3.4 million.

It is tough to track deaths from epilepsy since it so easy to have a seizure that then results in death from a secondary cause. But about 50,000 people will die from status epilepticus alone this year. (Status epilepticus is the medical term for “prolonged seizures” – seizures that last longer than 5 minutes.)

The federal government spends roughly five times as much money on the fight against breast cancer than on epilepsy research.

Now, don’t think for a minute that I am upset about the amount of money spent on breast cancer research. God bless the Susan G. Komen Foundation and the millions of women (and men as well) who worked tirelessly to get breast cancer awareness to where it is today.

Breast Cancer used to be a “hidden disease”, see – something that those suffering from it were ashamed to talk about. Over the decades its advocacy groups have dragged it from a hidden disease all the way to pink ribbons and “Save The Ta-Tas” t-shirts.

No, what I am saying is Epilepsy needs its own Susan Komen Foundation. Specifically, we need our own Nancy Brinker. (Susan Komen’s younger sister, who created the Foundation.)

November is National Epilepsy Awareness Month

So, this month is Epilepsy Awareness Month and, as usual, the epilepsy community is trying hard to get the word out about our condition. But, somehow, it just doesn’t seem to resonate outside of those immediately affected by epilepsy.

Part of that is straight-up bad press. Our country still believes, after all these centuries, that epilepsy and conditions like it need to be kept in the shadows. We still live in a world where one of the most popular sportswriters in our country feels comfortable saying that a college coach shouldn’t be allowed to coach due to his seizure disorder. (This represents the final time I ever read anything by Peter King or gave a penny in revenue to Sports Illustrated, btw.) And Peter King is not alone.

Also, the disability is, frankly, unattractive and disconcerting to those who have to watch it in action. Nothing sexy here, folks. For most of human history, seizures were mischaracterized as demonic possession, and for good reason: it really looks (and feels) like the controls to the body have been handed off to an extra-dimensional entity. Honestly, it is scary as hell. Scary to watch, scary to live through.

Lastly comes the problem of advocacy. The great majority of us with the condition are under some kind of pharmacological treatment. The drugs prescribed almost always impair our brain function in some way: seizures are, after all, hyper-active brain function. This means that it is tremendously difficult for those of us suffering from the condition to communicate intelligently about the condition. I can write about it fairly coherently, but put me up in front of a crowd of people to talk about it, and it all goes to hell: I turn into a stuttering, stammering mess who can’t remember what points I covered 30 seconds before. The wonders of life with a seizure disorder.

Add these things together and you have a soup that tastes like “no funding here, thanks.”

Extinguishing The House Fire

It all comes down to the old concept: it is very difficult to put out the house on fire while you’re inside the house.

The majority of us know so little about seizure disorders to begin with. Quick: name the one thing you remember from grade school about what to do with someone who is having a seizure.

More than half of you just said some variation of “Put something in their mouth so they won’t swallow their tongue.”

I sincerely hope that whoever came up with this wisdom never had to deal with someone having a seizure. If you ever come across a person having a seizure, do NOT, under any circumstances, try to put something in their mouth. They will merely damage the inside of their mouth even worse. My cheeks and tongue look like war zones after a seizure.

(Let me take this moment to tell you what to do: give the person some space. If you don’t know them well enough to know their seizure frequency, call 911. When their seizure ends, tell them what happened, and be prepared for them to be completely disoriented. Done.)

Down at the grade school level we need to change the narrative pertaining to seizure disorders.

We need the same thing on a local and federal level. People need to be willing to talk to politicians. We need individuals who are willing to donate to charities like the Epilepsy Foundation.

And, more than anything else, we need people who are willing to talk about epilepsy. Not to shrug and pretend it doesn’t exist.

Seriously, look at the numbers: if you know 100 people, you know someone with epilepsy. Just like if you know 100 people, you know someone who has survived or is going through breast cancer.

The great majority of women with breast cancer are now understood to be the warriors and heroines that they are. I can only hope that, someday soon, those of us with epilepsy are recognized in the same way.

Though I must admit I doubt anyone will ever come up with a slogan for epilepsy that has the punch of “Save the Tatas.” Brilliant.

But, ultimately, it is ok if we don’t get our own snappy marketing slogan and pink ribbon equivalent.

At this point, we will take whatever help we can get.

Talk To Someone About Epilepsy. Today.

  • Jeremy

 

 

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