November Is Epilepsy Awareness Month – So Where's Our Coverage?
I have a neurological disorder. It’s a common one that manifests itself in vastly different ways from one individual to the next. Some, like me, are born with it. Others develop it due to brain trauma from an accident or stroke. There are dozens of variants of its main symptom, though most people are only familiar with one of them. One in 26 people will be diagnosed with this neurological condition at one point in their lifetime. According to a report by the CDC in August, 3.4 million Americans have it and the number rises every year.
According to a New York Times article from 2016 primarily addressing the mortality statistics of this disorder, an estimated one in 1000 of the entire population of patients with this disorder – an estimate often disputed by the medical community as being far too low – will die suddenly and no one knows why. Roughly one in 150 people with this disorder will also die if their seizures are uncontrolled. According to the same article, this disorder is second only “to stroke as a cause of years of life lost because of a neurological disorder.” Every year my neurological disease is estimated to kill almost twice as many people as prostate cancer, a wretched disease my beloved uncle passed away from in 2015. Even though only some of us can grow mustaches, we deserve the same level of awareness and attention every November. Epilepsy affects more people than MS, cerebral palsy, muscular dystrophy and Parkinson’s combined and all of these receive more federal funding. This is not and will never be a competition for which horrible illness is the most horrible. I just want a spot at the table for us.
I’m epileptic. I’ve been epileptic my entire life. The only person I speak to about my disorder besides close friends and family is my local barista who needs to know why she can’t forget to grind decaf beans for my coffee. I have gone through extensive periods of illness throughout my 30 years on this earth and, though I try to think of quality of life as being relative, the realist in me knows mine is, has been and will always be a bit lower than the average person.
I’ve fleetingly wished to share tough moments but I operate under privacy principles very common to people with my disorder. I’ve never shared photos during bouts of boredom while literally attached to a hospital bed for 72 hours by dozens of electrodes glued to my scalp. My go-to action is making fun of my situation to diffuse the discomfort it often induces, like pointing my index finger, with a glowing red pulse oximeter wrapped around it, at my EEG tech and whispering, “Ellllioooottt” after I’ve had a seizure. I’ve never called in sick to work with the excuse that it’s because I had a seizure. People tend to be afraid of those with epilepsy. Many people don’t want to hire us. We know that and many of us shroud this huge portion of our lives in secrecy. Today that secrecy ends for me.
I was born with juvenile myoclonic epilepsy. Most people don’t know that there are over 40 different epileptic seizure types. Those with JME only exhibit absence, myoclonic, tonic and tonic clonic (gran mal) seizures. My diagnosis saga is a wild one and a story for another day, but all in all I’m incredibly fortunate to have a fairly manageable case of the disorder. I began having absence seizures at 4 and stopped having them in my mid-20s. I only had gran mal seizures for six years beginning at 18. They were always at night after crossing a drinking line, which is an understatement. I no longer have tonic seizures during the day and my myoclonic jerks generally happen in the morning and look like hyperbolic Jim Carrey-esque clumsiness. Cracked cellphones are my trademark. My absence seizures looked like I was spaced out to the max. My ability to stay under the radar to the degree I have is rare. I take a drug to cover those seizures that would prevent me from driving and I will begin using adjunctive medical marijuana therapy next month to see if it will help my tonic and myoclonic seizures which still happen, inexplicably, only while I sleep.
My epilepsy is nothing compared to more serious forms and I’ve still kept it a secret until now. I’ll take the sore back and headache in the morning after a seizure any day over the kind of epilepsy on behalf of which I’m really begging attention. I’m addressing the kind of epilepsy that makes it impossible for children to attend school because no medications are working and they are having dozens of seizures every day. I’m advocating primarily for those who don’t get to take just one, but swallow three, four, five plus drugs morning, noon and night to try to get down to one or two seizures per day. I’m advocating for those who have died of SUDEP, the aforementioned sudden unexpected death in epilepsy and those who have died from what’s known as status epilepticus, a seizure that doesn’t end or multiple seizures in five minutes or more, which kills 50,000 Americans per year. I’ve had one concussion from a tonic seizure I had at 27. Some people with epilepsy have so many that they have to wear helmets every day or have brain damage. Some people with epilepsy and their doctors don’t know where their seizures are coming from. I’m also speaking for those who have ended their own lives. Suicide rates are 22 percent higher in people with epilepsy than the general population. Those with epilepsy need the kind of attention the media affords other diseases and disorders with both lower and higher prevalence that people understand and which don’t make them uncomfortable.
I’m speaking for the millions of people struggling silently with a disorder that is unnecessarily stigmatized and feared because it’s not covered properly by the media and Hollywood portrays it solely through the image of a person in the throes of one of the 40 plus seizure types, writhing around on the floor and foaming at the mouth like a monster. People are dying and no one is talking about it. The number of epileptics is rising rapidly every year and no one is talking about that either. In the same CDC release from August, they reported that just short of one million more people have epilepsy this year than in 2010.
November is Alzheimer’s Awareness Month. The Huffington Post covered it on the 2nd. November is Prostate Cancer Awareness Month and Burger King is slowly growing a mustache on their mascot for the duration of the month. November is Diabetes Awareness Month. President Donald Trump released a press statement raising awareness. Quick Google searches I’ve done for the past week have turned up nothing about epilepsy besides a CNN article with a headline that grabs the attention of Hamilton fans and doesn’t mention epilepsy awareness month until several paragraphs down. I mean no disrespect to Miguel and Kelly Cervantes and their daughter, Adelaide. I thank them for raising awareness and wish CNN had handled their coverage differently.
Why are we left in the dust? I’ve mentioned my theories about fear and stigma. The life of someone with epilepsy is immeasurably stressful and often very sad and limited. The fact that we are still so desperately unseen, unheard and misunderstood adds isolation to the mix. Help us. Cover our growing numbers. Cover how wonderful, creative, smart, beautiful, compelling, productive, interesting and normal we are. Tell the public that every single one of them likely knows someone with epilepsy who stealthily clutches his or her story like it’s some kind of dirty secret. Ask them for their money so we can struggle less or, maybe one day, not at all. Talk about the children. That usually does the trick. Children are dying and when they’re not they’re being bullied, their seizures are stunting their physical and mental growth, and another generation is learning that this disease is not important and should be experienced in silence. Celebrities sometimes do the trick. Neil Young has epilepsy. Lil Wayne has epilepsy. Prince, President Theodore Roosevelt and Charles Dickens had epilepsy. Florence Griffith Joyner died in status epilepticus. These are people with vastly different audiences and attention to their battles by a major player would be far-reaching. Thank you to the small news stations and papers that cover epilepsy, whose stories are rarely picked up by the AP. We see you.
Dear big media and Washington,
Please see us. This is our month, too. We need you.
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Thinkstock photo via m-imagephotography.