Choose Your Epilepsy Words Wisely

“Never say anything that couldn’t stand as the last thing you ever say” –Auschwitz Survivor 

I have some serious questions. Questions I don’t think many stop to ask before they get diarrhea of the mouth. Before they start to make jokes about someone’s illness, before pure ignorance starts to flow from their lips. Ready?

1. Is it funny when the person you love is told the dreaded words “You have cancer”?

2. Do you laugh when you see someone grab their chest when excruciating pain hits and blood is no longer reaching the heart? Your loved one is suffering from a massive heart attack, is this funny to you?

3. Are you walking around imitating your friend, uncle, grandmother having a stroke?

I bet the answer to all of the above questions is a big NO. Then why the heck do people feel its okay to poke fun and laugh at someone convulsing, laying on the ground, losing all control of all of their bodily functions, losing sense of who and where they are? I don’t find any of it funny because with Cancer, Heart Attack, Stroke, and Epilepsy, I personally know individuals who have survived and DIED from all. I battle epilepsy every day of my life and believe me, it is no laughing matter. I did not laugh when I was out on the floor last Friday night in so much pain, auras, migraines, waiting for the seizure to hit, and when it did, I slept 17 hours straight recovering. It was not funny then and I wonder how many of you could handle life in my Epilepsy living shoes.

Let me spend some time and start with the basics. What is a seizure? A seizure is a sudden surge of electrical activity in the brain. During a seizure, the brain which is one of the main organs you need to survive as a functioning human being, operates at a higher lever than it should. The normal signals it sends to tell each part of your body what to do, goes into what we call an “electrical storm” and causes the brain to send too many signals at a higher rate than normal. So your body does not know how to process all of these signals at once. This causes the convulsions, the staring spells, the loss of consciousness. For some, their brain never recovers from the seizure and it leads to Sudden Unexpected Death in Epilepsy (SUDEP). Yes, it can be fatal.

Last week a video went viral of Christopher Jones of Perth, Australia who had a seizure while skydiving. Now many know that I plan to go skydiving for my 29th and a half birthday in July. The same day I made this announcement, the video appeared on major news outlets. My mom called me later that day and she asked if I knew about it. I could still hear the concern and how scared she was. I tried reassuring her that we did not know the underlying cause of his seizure but I am still her child. She will still worry about my seizures more than me jumping out of plane!

What I found interesting was folks laughing and thinking this was funny, watching his body tense up 9,000ft in the air. Not thinking this is a matter of life and death in real-time. I watched the video and tears streamed down my face. I, for one, thanking God because it was by His grace that this man’s body came back to someone who was able to pull the parachute early to make sure it deployed. He drifted away in excitement but came back in a grand mal seizure. Paralyzed with no one knowing what will happen next. Yes he survived and is okay. It breaks my heart and angers me at the same time that people can sit there and laugh. Um did you forget that this is what happens to me? Seizures can happen to anyone, any race, any age, it’s not picky.

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The same news outlet that aired the video, had a news anchor make a “joke” about seizures. A senseless, tasteless comment about a disability. Yes, that was the lovely CNN. Months ago they joked about a couple dancing like they were “having a seizure”. Chris Cuomo is an anchor on CNN’s morning show New Day. On Wednesday March 4th, the panel covered a heart warming story concerning a wedding dress. While the rest of the panel celebrates a Random Act of Kindness, Chris says marriage is all about doing things for other people. A co-host says “say that to your wife look into the camera”. Chris proceeds to say “I think that was a seizure, I’m swallowing my tongue.” For the record, it is not humanly possible to swallow your tongue. The most common myth is that those who suffer from epilepsy will swallow their tongue. I promise this boils my blood to see people get so careless and use another person’s disability as a joke.

We watch you get warm and fuzzy about everything else. Do your morals go out the window when it comes to certain things? But, I’ve learned it’s the things you know the least about, you are more prone to get careless with. To me, thats when you should not speak on the subject. As an advocate, I will be more than happy to educate and spread info to anyone, especially this CNN New Day panel on epilepsy. If you want to throw seizures out there, tell the world about March 26th which is #PurpleDay. This day is the Global day for Epilepsy Awareness where we will join together and advocate like no other. I encourage all of you to show your support of all 65 million worldwide battling this condition. November is Epilepsy Awareness Month but its our lives EVERYDAY!

Its time we no longer we stay silent. I said I will speak up because after the HUNDREDS of seizures I’ve had, I still in fact have my tongue. Silence will never be an option ever again.

With Love,
Whit
cf.epilepsy@gmail.com

UPDATE!!!!! Since the posting of this blog(3/12/2015) and many others like it, plus tweets and fb posts, there was a video released with a public apology from Chris Cuomo for his seizure joke. United, we can all make a difference. Thank you Chris for showing you heard us. Also, for being a stand up person and admitting your faults, mentioning #purpleday and sharing facts about Epilepsy! See video below from March 26th, 2015!

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