You know, a part of me thinks that I should write something relevant to the discussion of the “skinny bill” introduced in the Senate last week and the subsequent results of that bill. And I agree: I really should. The American healthcare system has impacted and continues to impact several subsections of the disability community in significant ways. For example, large gaps continue to persist in the healthcare services provided to people with disabilities. Considering all of this, I really should talk about healthcare.
Or, I could just write a general post about what epilepsy is. Guess which one I’m doing?
Okay, before you get after me, listen: I agree that healthcare in this country needs to be discussed, and recent events lend themselves to that discussion beautifully. However, “healthcare” is an extremely broad topic. Furthermore, healthcare’s relationship to disability becomes exponentially more complex when considering how the American healthcare system negatively impacts people with disabilities.
I have other reasons as to why I don’t want to talk about healthcare in this post, at least not right away. The problem with discussing the enormity of healthcare is that you will not understand why I care if you don’t understand what epilepsy is. In order for me to discuss healthcare in a meaningful, nuanced way, I need to share my understanding of what epilepsy means to me as an epileptic.
Like “healthcare,” “epilepsy” is a broad topic. It covers a lot of ground and involves a lot of messiness like historical trends in medicine and intricate cultural understandings. More importantly, all of these things are tangled up with one another and don’t leave us with a clear picture as to what “epilepsy” is.
As we covered last week, some people try to ask that, but their attempts usually end up being offensive questions and/or statements. I don’t believe that these offenses are always conscious; mostly, people ask offensive questions because they’re ignorant about the subject. However, those with the expertise like medical doctors and people with epilepsy often can’t answer “what is epilepsy” themselves. As an epileptic, I find it incredibly difficult to explain what a seizure is or what it feels like. How do you describe what it feels like to seize if you don’t remember what happened? How do you describe something that no one will understand without experiencing it themselves? These are the things that make having epilepsy and understanding epilepsy two different yet equally challenging concepts to discuss.
At the medical and scientific level, we can define epilepsy as follows: “epilepsy” is a chronic seizure disorder that occurs from several triggers, including but not limited to a lack of sleep, caffeine, or, most obviously, not taking your medicine…all of which I have done at one point or another. To explain epileptic seizures in absolute layman’s terms, the seizures occur because there is “excessive electrical discharge in a group of brain cells.” To understand this, think of your brain as a generator. The electrical charge that powers the generator of a non-epileptic person would be set at a 5 kilo-whatevers per second. However, an epileptic person’s brain uses the same equipment, like the generator, but the electrical charge powering that generator is turned up to 20 kilo-whatevers per second instead of the recommended 5. This means, then, if you have epilepsy, your brain produces more electrical discharge than it can handle, thus creating seizures. The seizures can begin in one part of the brain or perhaps the entire brain that then manifests as uncontrollable actions or movements of the body. The origin of the seizure can be the entire brain or one part of the brain like the temporal lobe. The body then produces the seizure as a result from the neurological upset, like myoclonic jerks (excessive muscle spasms in either a part of or the entire body), staring off into space (absence seizures), or involuntary reactions like chewing your tongue or picking at your clothes. This is what epilepsy is medically, but it’s important to note, as the World Health Organization does, that the most common form of epilepsy has no known cause.
This is the very general medical understanding of epilepsy. However, it’s the cultural history of epilepsy that, in my opinion, tells us more about how and why we perceive epilepsy as this amorphous, mystical entity of a disease. Medical historians like Owsei Temkin have reviewed in-depth the cultural history of epilepsy of how it was perceived prior to the advent of modern medicine in the 19th century. Despite the fact that Temkin’s work is significantly flawed in that it was written in 1945 while abusive asylums for epileptics were still in popular demand, his work on the cultural understanding epilepsy has helped contextualize a popular dichotomy used to understand epilepsy. This dichotomy is unofficially known as the rhetoric of “angels and demons.” This dichotomy is interesting yet disturbing considering its long-lasting effects on the disabled community and how American culture perceives people with disabilities. For example, some theorize that the many notable prophets in the Bible were actually afflicted with a form of epilepsy known as temporal lobe epilepsy. Some medical historians and scientists believe Joan of Arc was one such prophet, even though others disagree with this assessment. However, in a post-Crusades Christian world, it was believed that epilepsy was the result of demon possession. In order to combat these demons, exorcisms were performed on a variety of people with several neuroatypical and neurological disabilities, especially epilepsy. Although it’s rare today, exorcisms are still performed on epileptic individuals in the United States, and the Catholic church has revived interest in performing such exorcisms.
In short, epilepsy is a well-documented neurological disorder with several cultural meanings attached to it. As I mentioned before, though, it’s still difficult for people with epilepsy to articulate their experiences. Because there is no known cause of primary epilepsy, doctors also have a difficult time understanding the disorder. Some epileptics are misdiagnosed as something else, such as schizophrenia or bipolar disorder, which results in costly and dangerous medication expenses that either do nothing or exacerbate seizure activity.
In examining all of this information, there is a third way to define epilepsy that is underdeveloped but is on the rise in several activist communities. This third option is to understand and define epilepsy in not only medical and cultural terms but in anecdotal terms. Epilepsy is more than a disorder or a stigmatized term; it’s an experience. People with epilepsy, especially epilepsy in which there is no known cause and no cure in sight, must contend with their new lives of having this illness. The burden to have epilepsy in this context is to live with it. Epilepsy is often talked about in past terms, meaning it’s something that happened forever ago. It’s an old term, but it hangs around because we don’t have a better way of describing what it could be.
The importance of using anecdotes to describe epilepsy, and all disability, is that it allows people with disabilities to qualify their own experiences. These experiences collected together can, therefore, speak to a larger societal problem in how we deal with and understand epilepsy.
And now you might be asking: “So, how do you define your epilepsy?” Or you might not be, but I’ll tell you anyway.
My epilepsy is its own being. For me, having epilepsy is like having a frenemy that likes to stay over at my place way too long, eat all of my food, and then trash the place. She’ll remind me that I’m not good enough by putting me down, quite literally, and I’ll lose my balance. My body won’t work the way I want it to. When she talks, which is all of the time, I lose my train of thought and won’t be able to find it again. She’ll make me forget what I was doing in the first place, gaslighting me into believing that this is the end. She’ll whisper to me that I’m actually going crazy, and that maybe I should just be strapped to a hospital bed for an eternity. She’ll then pick fights with me so that I forget my medication when I’ve already forgotten a dose. Worst yet, she’ll push me face-first into my couch all day, and then I’ll lie there unable to be a part of the world for hours or even days at a time.
But then she has her moments. There are times when she shuts up and lets me think. She’ll give me amazing ideas for projects in the form of vivid, horrific nightmares. I’ll hate her for doing it, but then I wake up with the most beautiful plots in my mind that she decided to only share with me. She will purposely make me lose my balance just so I can see the world in colors that no one else can see. I won’t be mad at her for this, because these images were kept in her hiding place that she’s graciously decided to share with me.
My epilepsy is a bitch who can have her moments, and when she does have her moments, she presents a challenge. She challenges me to be better, to think harder, to adapt to a world that won’t adapt for me and, frankly, wasn’t designed for me in the first place. Although I hate her with every fiber of my being, she reminds me every time that she trips me that I can still get up.
And I’ll get up every time just to wipe that smug smile off of her face.