Being an Invisible Minority Or How I Learned To Live With Falling Down On the Ground and Flopping Around Like a Fish Out Of Water

Quick, how many of you know someone with epilepsy? Usually when I ask that question out of a group of ten people at least one person raises their hand. This isn’t really a surprise, since one in twenty-six Americans will get epilepsy of one form or another, in their lifetime. Roughly three million people in the United States and sixty million people worldwide are living with epilepsy right now. Every year another two hundred thousand people are diagnosed with epilepsy. Out of those, for two-thirds of the patients the cause will be unknown.  The second question I ask is how much do you know about epilepsy, which tends to get a lot of blank looks along with mostly old wives tales and stuff from bad TV.

So from this info dump we can glean that there are a lot of us, with more coming all the time but we really don’t stand out and people are, in general, woefully misinformed when it comes to what epilepsy is all about.  At least not until things start getting weird. When I look up the most common questions about epilepsy (that are not from people with epilepsy), they include such gems like, is epilepsy catching, are some races more likely to get epilepsy, is epilepsy inherited, and can marijuana cure epilepsy? The short answers are no, no, rarely but it’s complicated, and no, but there are some indications that it helps reduce seizures. I have had chiropractors tell me they could cure my epilepsy by adjusting my spine and vegans tell me that all I needed to do was stop eating meat.  The fact is that except for children who are lucky enough to grow out of their epilepsy (young brains are amazing things that can actually reroute around damage and make new paths) there is no fucking cure for epilepsy.

Let’s get a few basics out-of-the-way right out front. We cannot swallow our tongues during a seizure. To understand why, stick out your tongue, then reach in your mouth and grab the small fold of mucous membrane that runs from the floor of your mouth to the underside of your tongue. This is called the frenulum linguæ and it’s what keeps you from swallowing your tongue. Some misguided soul once thought she needed to “help me” and stuck the handle of a hairbrush in my mouth, which I promptly chewed to pieces.  I was spitting out bits of acrylic for the next couple of hours. Sometimes after the seizure is over and the person is lying on their back, if they have been producing a lot of spit and snot it might be hard for them to breath. ASK THEM if they want to roll over on their side. Then help if they need it. Secondly, do not hold us down. We are very likely to hurt you and we will feel really bad about it. If you are strong enough to keep us from moving you will hurt us horribly. If you can, clear the area so we don’t slam into things that would be nice, otherwise let things take their course.

Here’s a big one which seems kind of obvious but can’t be reinforced enough. When I get done trying to break the concrete floor with my head (also known as a tonic clonic seizure), the last thing I want is to wake up to is a circle of feet. I’m usually beaten and bruised, tired as fuck and would really, really rather be anyplace else in the world, so your standing there staring at me is not helping at all. Nobody wants to be the center of attention when they are at their worst and when you have no idea what kind of spectacle you have made of yourself, it becomes an experience that makes you want to crawl into the nearest hole and fill it in behind you.  Also calling 911 is going to depend on the situation. You need to empower the person on the floor. Ask them what they want to do first. I really can’t stress that enough. They might be dazed and confused but give them a chance to figure out what is happening. Some of us already have plans in case this happens and need an ambulance or the police involved. Other times it is the best course of action. If you see blood, the person isn’t coherent, doesn’t regain conscious, have another seizure or says they have never had a seizure before, then call 911 and whoever they ask you to call.

 

The thing is, those of us who do the big show are a pretty small percentage of the people with epilepsy. Most of the people with epilepsy just fade out for a bit (minor focal). Sometimes they remember what happened, sometimes they don’t, sometimes they drool, have tingling sensations, audio hallucinations, and fun stuff like that. I’m one of the lucky ones who get both the tonic clonic and the partial focal seizures.  I didn’t even know the little ones were happening until I was fifty years old even though they had probably been happening all my life. It took a neurologist hooking me up to an EEG for a week for them to figure that out. They use airplane glue to attach the leads to your head and you are tethered with a cord just long enough to go to the bathroom from your hospital bed, FOR A WEEK.  One day my neurologist came in with a long sheet of paper covered with the squiggles that I had learned a long time ago to recognize as my brain waves. He pointed to a large spike that was timed at about eight minutes before and asked if I remembered anything about that time. Turned out during that week I had half a dozen minor seizures that I didn’t even notice. I’d spent my entire life learning how to compensate for the damned things so that they became a part of the background noise. I didn’t start doing the one man mosh pit until I was thirteen which was when the world got a whole lot different

Do you want to know how to be sure you will never get close to any junior high school girl, ever? Try falling down, frothing at the mouth, slamming into desks, and put on a performance that rivals even the kid who had his pants set on fire when he lit his fart. You start to develop a very thick hide under that kind of circumstance, also a degree of brutal honesty. When you have no idea when you will be doing the Tasmanian devil’s version of Stop, Drop and Roll, you tend to be less forgiving of other people’s bullshit and your own for that matter. Being a kid with a condition that people talk about in whispers (or yell at you along with obscenities) tends to lead to a bit of an attitude. Some people with epilepsy would be perfectly happy to stay out of the public eye, keeping as low a profile as possible but for others it becomes a case of, “Fuck it, I have to live with it. You might as well get used to it too.” For me it was a bit of both.

One example is letting your coworkers in on what is going on at a new job. Since I’m not interested in another round with a hairbrush, I let the people I work with know how to handle things if I have a seizure.  I have lost jobs over this. There was an occasion when a boss was so skeeved out after watching me do the one man mosh pit that she first tried to demote me and when I fought her using the Americans with Disabilities Act, she did what is known as ‘performancing you out’. This is a method whereby the management writes you up for the smallest possible infractions every day until they add together to the point where they fire you. I made the mistake of not getting a lawyer until after I was fired and by then it was too late. Being an invisible minority means that if I walked into court to fight the case, they would hold up the paperwork showing I didn’t do my job and I would look like one of those characters who is out for the money. Being an invisible minority means that unless you are having a seizure people don’t see you and if you are, people get really scared.

In fact they were scared enough that for a long time they were willing to have people with epilepsy sterilized. Yep, men and woman throughout the United States had their ability to have children taken away even though epilepsy is very rarely inherited. This was going on through the mid 1970’s in the south states and California. The Nazis got their ideas for cleaning up the gene pool from the fine folks here in the US and it wasn’t about religion or color as much as it was about ‘feeble mindedness and epilepsy’.  The poor bore the brunt of this social engineering, of course, with women of color getting the worse end of the stick. If you were a young black girl in Kentucky and happened to have a seizure no matter what the reason, from hitting your head on the edge of a table, having a high fever as a baby or being throttled by an abusive step father, you would face the knife. Fear and disgust can make people do some truly awful things. Which is why we do everything we can to blend in.

The big problem with keeping a low profile is when you can’t. It’s one thing for the average person to make a stupid mistake with a hairbrush, it’s another for a cop to decide you are resisting arrest because you won’t follow his instructions during your tornado tango and Taser you.  It has happened, at least three times in the past few years and in one case with family around to tell the cops the person they were electrocuting had epilepsy, which the cops ignored.

http://www.nhregister.com/general-news/20140126/epileptic-man-files-suit-against-hamden-police-over-use-of-taser

It would be easy to just lay it off as idiot cops but there have been multiple cases of teachers, district attorneys, and security guards making equally bad calls, or worse. http://www.al.com/news/annistongadsden/index.ssf/2015/07/lawsuit_police_fired_taser_3_t.html

http://abcnews.go.com/Health/story?id=2675812&page=1

As an invisible minority we have very little in the way of protections because in many cases our condition can be controlled with medication. For a while there was even a Supreme Court decision that kept us from being covered by the ADA that only changed with the update under Bush. All too often the first question you get asked after you have a seizure is, “Are you taking your medication?” “No, actually this is my attempt to turn my body into a modern art installation called ‘A Study in Hues of Purple and Green.”

Of course, there are multiple medications that are used to control seizures nowadays. Notice I use the word control and not cure. Let me repeat, there is no cure. I’ve been stabilized a number of times, sometimes as long as four years without a seizure but then it’s rippy zippy time and we go back to the drawing board. I once asked my neurologist why I’d been doing so well and now I was back to playing the electrocuted inchworm. The doctor told me about a class she took in college where a student asked the same question and the professors reply was, “Epileptics have seizures.” Fuck you doc. For a long time stabilized for me was two or three seizures a year.  I’m currently seizure free on a medication that has also causes me to have incredibly painful kidney stones. Probably some of the worst pain I have felt in my entire life, like crawling on the floor, gasping to breath, praying to die, kind of pain, and I will keep taking the meds rather than try another medication that might or might not control my seizures. People who have had dozens of seizures a day have gone as far as having their brains split in half, having magnets implanted in their chests connected to a wire implanted in their brain to reduce the electrical storm.  There are very few steps people won’t take to stop the Big Bad Wig Wag. What would you do to get back your life, your job, your social life, your ability to drive, or just make it through the day without getting up close and personal with the floor?

Yes, one of the things I have given up is driving. I just don’t do it and I live in a state that turns into a frozen wasteland for eight months out of the year.  Ever since I was a teenager I’ve told folks that it’s because if I had a seizure and killed someone, there would be no way I could live with myself. Sure, I don’t want to take responsibility for thousands of pounds of metal when there is even the slightest chance I could suddenly be doing an imitation of snakes in a blender. Trying to ride a bike to work in the dark at -10 degrees Fahrenheit in 40 MPH winds on black ice while dodging people who have forgotten how to drive in the winter qualifies as the next extreme sport for ESPN 8 but it’s better than the alternative. The new reason I can add to the list is that I don’t want to be charged with murder. In 2014 Mr. Armando Gonzalez was convicted of second degree murder because he had a seizure while driving and killed another driver.  He had been cleared by his neurologist to drive and given a license by the California DMV.  But he was convicted under the Wilson Act, which means; the death resulted from an intentional act and since the natural consequences of that act are dangerous to human life therefore Mr. Gonzales knowingly acted with conscious disregard for that fact. Mr. Gonzales did everything right under the law and is still spending time in prison because his body betrayed him.  I’ll stick to practicing for the future gold medals in extreme commuting.

Having epilepsy is complicated. It is a Sword of Damocles hanging over your head that does things to your personality, your social status, the jobs you can have, how you can spend your time, and how much sleep you get (get your eight or the floor will be in your immediate future). But most of the time people can’t see those issues. Unless you are willing to talk about it, put yourself out front in a way that could easily seem like you’re asking for sympathy rather than imparting knowledge, people are going to pass you by blindly. If you meet someone with epilepsy the chances are they won’t mind answering your question (unless they are really personal and no, having sex does not cause seizures). My daughter was at work when a customer had a seizure and she calmly handled the situation. Later one of her coworkers asked how she could be so ‘cold’ about what had happened. My daughter said she had seen dozens of seizures and there was no reason to get upset. We want you to know about this electrical storm in our head so if you see someone at work you can be like my daughter. For that matter it would be good, if when a friend, a family member, or even you ever have a neurologist come out with that long strip of paper with spikes on it, you will understand what it is like being an invisible minority.

Peter Hill

About Peter Hill

Hunter of vinyl, lover of music, drinker of Guinness, causer of trouble and pounder of keyboard.

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