Five Things I Wish People Knew About My Epilepsy

PEXELS

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I typically do my best to avoid thinking about my epilepsy. I admit that I’ve gotten pretty good at this. Or at least I tell myself that I have. I can get through some days without having a seizure and therefore ignore the reality that, whether I like it or not, epilepsy and all the things that accompany a neurological condition are indeed a part of my life. I’ve come to accept the truths of my disorder and, more importantly, come to embrace and understand many things about it. 

But, despite what I personally understand, know, and feel about epilepsy, there are many people who are, for one reason or another, utterly ignorant to what I and other epileptics endure on a daily basis. Even close friends and family members can be totally clueless. To be clear: This is not necessarily through any fault of their own (at least not in most cases.) Oftentimes, it’s merely due to a lack of basic education, knowledge, and experience. 

So, speaking of education, here are some quick stats: Today, over three million adults in the U.S. suffer from epilepsy, in addition to almost 500,000 children. Each year, over 150,000 Americans are diagnosed with some type of neurological disorder that will result in or cause seizures. There are many different types of seizures, each with its own vast array of accompanying symptoms and after effects. (Everything from staring blankly into space to uncontrollable twitching to more extreme behaviors such as tongue-biting and loss of balance.) Some of us experience one, all, or a combination of these symptoms depending on the severity of the seizure. Epilepsy is currently the fourth most common neurological disorder after migraines, strokes, and Alzheimer’s. It can also be associated with and triggered by migraines. Many times — and in my own case — migraines can occur before, during, or after a seizure. 

It may not be Epilepsy Awareness Month yet, but — for what it’s worth — here are some thoughts that I felt might be worthwhile. Please excuse any momentary hints of resentment or indignation that may surface in this post. If you or someone you know has epilepsy, feel free to pass these along to surrounding friends and family members in an effort to contribute to a better understanding. 

1. There is no one-size-fits-all treatment or medication option. 

Don’t assume that we can just go see a doctor, take a few prescription pills, and be fine by next week. Epilepsy is far more complex than that. In fact, for some of us, it may even involve non-medication treatment, such as counseling and therapy. And even then, the truth is that all the medication and therapy in the world still wouldn’t alleviate every symptom, particularly the neuropsychological, emotional, and spiritual symptoms. This leads me to the next point. 

2. Please bear with my frequent moments of intense anger, frustration, discouragement, and depression. 

Epilepsy is a very psychologically and emotionally torturous condition. It wears on our feelings. It grates on our state-of-mind. It conjures up intense levels of fear and terror, the magnitudes of which I don’t even possess the words to adequately describe. It causes us to doubt and worry. It seizes the mind and injects anxiety into our daily thoughts, particularly before and after a seizure has occurred. It infuriates us because we cannot stop, cure, or control our condition. It inhibits our ability to drive and robs us of our independency. It discourages us and, oftentimes, brings us to a dark place of depression, even if we do not appear to be depressed on the outside. 

3. If I don’t have a job (or a “real” job), it’s not because I’m lazy. 

There are countless physiological and psychological triggers for seizures, not the least of which are stress and sleep deprivation. These are my two strongest triggers, both of which eventually forced me to have to stop working in the clothing retail industry, which I had been a part of for almost 15 years. The high stress levels associated with customer service, Black Friday madness, the Christmas rush, dealing with the public (including shoplifters) on a daily basis, responding to the pressures of management expectations, juggling late-night closing shifts, and overnight inventories finally took its toll. I was having several short partial-complex seizures before and after my shifts, and eventually had a longer one during a shift — one which caused me to lose my balance and hit the floor. The latter seizure prompted my manager-on-duty to call an ambulance, ultimately bringing my retail employee days to a close.  

4. No, you don’t have to be “scared” or “freaked out” around me. 

Being an epileptic doesn’t make me some sort of freakish weirdo or hazardous threat to society or ticking time bomb. Leave the butterfly net at home, please. 

5. I still want to have as normal of a life as possible. 

Epilepsy stole my ability to drive. It took away much of my independency. It robbed me of certain career opportunities that I might have achieved otherwise. It has neuropsychological effects on my ability to eat and swallow solid food. (For more on that story, see my Epilepsy Page.) The medication has frustrating side effects. It affects my sleep cycle. I could go on and on. 

Regardless of these realities, I still want to have as normal of a life as possible, just like anyone else. I’m still a regular person who does regular things. I go to church. I spend time with friends and family. I go to movies. I date. I eat sandwiches from Chick-fil-A and drink coffee from Starbucks. I read books and listen to music. I meet and interview fascinating people throughout my city. I watch my writing get published in local magazines. I design websites and digital media for churches and ministries. I speak on cultural, political, and spiritual issues. 

So, I’m still a pretty normal dude (by most accounts anyway.) I just happen to be a normal dude who has epilepsy. 

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