An Epileptic Reviews A Book About an Epileptic

 

Ray Robinson’s Electricity is a 2004 novel about a woman, named Lily, with epilepsy who finds out her abusive, estranged mother has died. We also learn that it was her abusive, estranged mother that threw her down the stairs, triggering her epilepsy in the first place. The mom’s death leads to great fortune, and Lily then gains enough money to leave for London to find her favorite older brother that she was separated from after the falling-down-the-stairs-and-seizing-thereafter bit. Apparently, he became homeless at some point, which leads to the whole searching in the homeless people’s faces at King’s Cross Station.

This character is meant to be, according to Catherine Taylor’s review of the book, “a fine study of defiance, a refusal to be defined by a medical condition.”

I can say with both opinions and facts that this “fine study in defiance” misses the point of its premise.

Just so there’s no confusion, epilepsy as defined by the American Epilepsy Foundation’s website is: 1) a condition of the brain that causes seizures, with; 2) a seizure being a disruption of electrical neurons in the brain; and 3) someone is said to have epilepsy if they experience two or more unprovoked seizures in less than twenty-four hours. When the general population thinks epilepsy, we think tonic-clonic seizures, or “fainting spells” as they are called in 1850. The character Lily in Electricity has this form of epilepsy, and they’re the most audacious and attention-seeking form of seizures. That’s why when I tell people “I have epilepsy,” they ask me “the one where you fall down?” Or, they mean the neurological disorder that makes a person fall asleep. To which I respond “No. That’s narcolepsy.

Like any other artist who sees beauty in tragedy or some shit like that, Robinson felt severely affected by his cousin’s epileptic seizures. His cousin lived with his family and suffered from tonic-clonic seizures and, according to Robinson, “full-blown hallucinations,” which also known as complex-partial epilepsy. But thanks for making it sound like a drug trip. Watching his cousin seize as a child, he felt the following things: “It was terrifying but, perhaps perversely, intriguing. Watching her thrashing about on the floor, I’d wonder what it felt to be her..,.” See, terrified is the correct response. When you’re a child watching someone seize severely and you know nothing about what’s going on, terrified is normal. But then you move on to learn. And when you learn about the disorder and its effects on people’s lives, you learn that, while the amount of people with epilepsy, including those unable to be treated, is insanely high, living with those seizures is possible. Robinson didn’t so much as learn about the condition to better educate himself as he examined the “epileptic condition” like a scientist and the concept of epilepsy serving as his experiment. Robinson took this childhood fascination with watching a family member experience the most severe form of this disorder and wrote a novel based on this fascination, while his cousin could have died from that level of seizure activity.

The process of researching for this book follows this unhealthy and stigmatizing fascination Robinson holds. Instead of feeling the need to initially ask for a first-hand perspective, he started the lifelong journey of asking clinicians and neurologists of the biological effects of epilepsy, in which he probably only learned about ten percent of the information because he failed to comprehend that there are at least fifteen known seizure types, all of which include at least three to four possible variations of that seizure type. Also, many epileptics can have multiple seizure types all at once, creating a fun little fiesta for the whole family. For example, yours truly has absence seizures, complex partial seizures, and myoclonic seizures. He then had a personal awakening that if one wished to tell the story of an epileptic and not the epileptic’s physician, he should actually consult an epileptic. Despite this, Robinson’s book still manages to miss pertinent details that are simply part of being an epileptic.

Just to give one small example, the book’s inconsistent medicine to seizure ratio. See, if an epileptic takes their medicine, and they always take it like they should, they should have some degree of seizure control, or at the very least, have the ability to live with those seizures. The medication is not a guarantee, but the medication provides the ability to function and hopefully control seizures. The seizure type that Lily has isn’t mentioned, but almost every passage in the book depicts her seizing. This high level of seizure activity would make sense if Lily wasn’t taking her medicine and/or she wasn’t diagnosed and had no medicine. But lack of diagnosis makes no sense because she has an extensive, medical-related knowledge of how to maintain her disease. So, Lily’s severe lack of cognitive function throughout the entire novel makes no sense, and because of this, Lily’s lack of presence seems inaccurate and needs further explanation.

This may seem like something small and unimportant. Why would an epileptic care about this? We’re represented! We’re in literature! Isn’t that swell?

Well, I care. Mainly, I care about how epileptics are represented in Electricity. Robinson’s focus on the experience of being epileptic was to focus on the physical aspects, the body and what happens to it. In this effort, he failed to insert those necessary details that would make Lily living with epilepsy an established center of the novel. See, the details are the things that every epileptic just knows, like: What medicine do you take? What alternative medicine do you take if any? What are the effects of both on your body? How much caffeine do you drink? Do you do meth? How much sleep do you get? Are you wearing your medical bracelet? How is school? Do you feel stressed? And so on. This litany of questions is important because their answers affect the disorder in some way, which is what makes Lily’s lack of knowledge so upsetting. Epileptics know all of the answers to these questions to the point where it’s background noise. Lily’s lack of information on these topics makes her a victim of herself, which is the inherent issue with this book. Robinson portrays her as someone who suffers, not from the very real social or medical barriers set up against epileptics but suffers from the “mindset” of the perpetual victim.

By writing Lily as this perpetual “victim,” Robinson makes it seem like all epileptics are struggling, leading only incomplete lives. Which is not to say we don’t struggle. We do. Very much. Having seizures on a frequent, daily basis sucks. It’s not fun or pretty, and I’m not telling you that the physical pain and disorientation Lily goes through is inaccurate. Actually, that’s the part that Robinson writes well. I’m telling you that, despite Robinson’s attempt at an ethical representation of an epileptic, he perpetuates the idea of “the epileptic” as “the victim,” a portrayal that further stigmatizes epileptics.

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