Are children with epilepsy healthy? This may seem like a question easily answered. After all, we could simply ask ourselves the following question: would I consider myself healthy if my brain routinely caused my body to seize, significantly limiting or altering my daily routines, changing whether I could drive, what vocation I could be successful in, and limiting my favorite hobbies or social events in many ways? Most of us who have never seized would answer that question easily with a confident, “No”.
However, because of the blanket misconceptions and stigmas associated with seizure disorders, the question of whether or not a child with epilepsy is healthy has become a convoluted one.
Case in point: Recently, I ran to Walmart for groceries, while my family was vacationing in Orlando, Florida. The cashier asked me if I was local, and upon learning that I was not, wanted to know if I was there to visit Disney World.
“No”, I replied, happy, “We’re here to volunteer and visit Give Kids the World Village.”
“What’s that?”, she asked, genuinely perplexed and curious.
“It’s a resort where children with life-threatening illnesses are given a chance to have a Wish granted, in the Orlando area. My daughter was there as a Wish child last year. This year, we are here to visit and to give back a little bit.”
“What’s a Wish?”, the cashier questioned me further.
“A Wish is a big gift given to a child with a life-threatening illness by a nonprofit organization, like Make-A-Wish.”
“So, your child has a life-threatening illness?”, she questioned, making the logical connection.
“Yes”, I replied.
“What does she have?”
“Oh.”, then, “Is she your only child?”
“No. I also have a son.” And because I’m used to the follow-up question, I added with a smile, “He’s healthy.”
“But your daughter is healthy too!”, came the lightening – fast response.
Blank stare from me. I had just said my child had been granted a Wish, that Wishes were for children whose lives are threatened by the diseases they bear, and that the Village we we’re going to visit served these special children. I had just answered her question as to what illness threatened my daughter’s life enough that she was given this opportunity, and this woman processed my response of “epilepsy” as being equal to “healthy”. You can’t make this stuff up, people.
“I mean, there’s a lot they can do for seizures nowadays”, the cashier continued in response to my stunned silence.
“There is a lot they can do, but she is not healthy”, I answered wondering if parents of children with cancer would ever be told their child was healthy because there are a lot of treatments available for their condition.
At this point, another mom who had been loading her groceries behind me and overheard our conversation addressed me. Her son had recently begun seizing. There was genetic history within her family for epilepsy. She was in town running a marathon to raise money for another Wish-granting organization. This mother and I shared condolences and phone numbers, I bid a genuine good day to the ignorant cashier, and I drove back to my waiting, hungry family.
I wasn’t angry with the cashier, but I was, once again, surprised. Why? I don’t know. The sad truth is that this type conversation for those within the epilepsy community is normative. People do not understand the risks, losses, and cost-versus-benefit weigh outs that occur on a daily basis for individuals battling epilepsy. They see seizures as an annoyance, not a life-altering – let alone life-threatening – disorder.
There are reasons for this, or rather there are excuses. In situations like these, people often know someone who’s seizures are “easily” controlled via pharmaceuticals, CBD, diet, or surgical intervention. (I put “easily” in quotes, because often these individuals also have no idea how very opposite-of-easy it was to find this magic cocktail to control an epileptic person’s seizures, nor do they understand what a person has lost, in the way of side effects, to control them.) They are likely ignorant of the 1/3 epilepsy population who’s seizures are consistently resistant to multiple interventions. In other words, because they know of someone who appears to be living a healthy life with epilepsy, they equate the disorder itself with health. Their brain neurons fire making illogical leaps and cementing assumptions and then finally compute:
A counter-intuitive oxymoron which a healthy person would never apply to themselves if they were to suddenly develop a seizure disorder.
November is epilepsy awareness month. It is precisely because this kind of lack of logic and education exist that raising awareness is necessary. Without an understanding of the devastating ways seizures reap havoc on the lives of those who bear them, without ever having heard of a child or an adult who passed away – suddenly, overnight and without warning – after having lived a very “normal, healthy-ish” day the day before, due to SUDEP [Sudden Unexplained Death from EPilepsy], without knowing of young adults who’s late night exam cram sessions in college lead to morning tonic clonics landing them in bed for days thereafter, without watching a teen go through not just the hormonal behavioral, voice and complexion changes of puberty, but the increase of devastating seizure activity to boot, people will continue to wrongly equate those on the front lines of the battlefield with epilepsy as healthy.
On the way to Wal-Mart that morning, because I was an out-of-tower, I was paying close attention to road names. One of the road names I passed was the name of one of my friend’s sons who battles epilepsy. The same son whom I had just read an update about on Facebook that morning, asking for prayer because after several days of a seizure-free streak, he was now headed back to the ER with unrelenting convulsions. Again. When I’d seen his name on that street sign that morning, I’d remembered his mom’s update and continued to pray for him and his family.
When I left WalMart an hour later, I found myself wishing the cashier had had the opportunity to know this epilepsy warrior and his family too. Because her knowing his daily struggles wouldn’t have affected whether or not seizures kept that boy in the hospital or not that day, but maybe….just maybe…her knowing would have changed the cashier’s own definition of healthy JUST enough to DO something to help others like him.
Maybe it would have caused her to google ‘Give Kids the World Village’ when she got home, to learn about a place where people volunteer to ease the very real suffering of this boy, and countless of others like him, just 5 minutes away from where she punches in to work every day. Maybe a cursory question to Alexa, Siri, or her Amazon Echo, regarding SUDEP or other seizure fatalities, would help her learn that this disorder isn’t either healthy or normal. Maybe that knowledge would help her to understand cures for seizure conditions don’t currently exist, and still need to be found and fought for. Maybe she wouldn’t scroll past that November Epilepsy Awareness meme on her Facebook feed, but might read it, grasp it, like it, or *gasp*, share it to help raise awareness.
But, who knows, maybe after our short conversation, she will do all of that.
And maybe after reading this, you will too. Maybe you will help us to raise epilepsy awareness, and thus raise hope for finding a cure. Because as long as people equate epilepsy with health, there will be less time, money and effort invested into finding cures.
Which is why ignorance and apathy are inexorably linked.
But, so are knowledge and action.