Living in The Gray Area

11.09.14 Post by Ian Kantonen

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I have had some form of this drafted up for almost a year, and I feel like the time has finally come to share it. This is a particularly fitting time, as November is Epilepsy Awareness Month. It definitely isn’t one of the better advertised awareness months, so don’t feel too out of the loop if you didn’t know anything about it—the only folks I know who know it’s Epilepsy Awareness Month are those with personal connections to people with epilepsy. So I’m here to be your personal connection and make sure that this Epilepsy Awareness Month some awareness will actually be raised.

There is another reason this is such a great opportunity to reflect on my experiences: next month I’ll reach the incredibly important milestone of being seizure free for 5 years. There may be a party and purple cupcakes involved.
[Of course, this requires a disclaimer: I can only speak of my own experience, and I am in no way speaking for anyone else with epilepsy, seizure disorders, or other neurological conditions.]

I had my first seizure at age 7, but because of the nature of my seizures I was not diagnosed until I was 9. Those two years were characterized by fear, uncertainty, and exacerbation of mental health issues in my family. I was eventually diagnosed with simple and complex partial seizures, which often manifested as hallucinations, headaches, dizziness, trouble speaking, and vomiting. I was on medication for two years and un-medicated for two more, until I had another seizure two weeks before starting high school. I struggled with medication and health insurance for most of high school, having seizures in class and being so medicated I couldn’t stand up until I found the proper meds. Taking the SAT is difficult when your head is so clouded you can’t remember what the question was by the time you get to the last answer option; getting a good grade on a final is almost impossible when you have a seizure during the in-class essay; and turning 16 is a lot less exciting when you know that you may not be able to get a driver’s license.

Even though I’m seizure-free now, not a day goes by that I don’t have to think about my condition. Not only do I have to make sure I take my meds at a reasonable hour each night, but I constantly have to ensure that I am getting enough sleep and keeping my stress levels low, a difficult task as a Macalester student. I also struggle with the constant fear I will have another seizure, overreacting to every headache or instance of déjà vu. I am not supposed to drink alcohol, and if I have more than two drinks I often black out and will have a horrific hangover. I’ve had folks harass me when I turn down drinks, demanding an explanation for not participating in what is considered normal college culture.

I wear a medic alert bracelet, which has my condition and an ID number, which would allow me to get the care I needed if I was in some sort of accident (like getting hit by a car) and was unable to communicate my needs. However, this means that I pretty much literally wear my condition on my sleeve. The bracelet is beautiful and subtle, and usually goes unnoticed, but that doesn’t mean people don’t see the logo or ask to look at it. And then I have to explain.

I have found myself assuring those who find out that my epilepsy “isn’t bad at all” or that “oh I just have partial seizures,” distancing myself from the more common depictions of epilepsy. Partially I do it to try and reduce the pity I see in people’s eyes, but I think I subconsciously am worried what people with think of me, and by extension by competence, if they believed I had grand mal (convulsive) seizures, which many view as incapacitating (they aren’t). This, to me, seems like a type of internalized ableism, where I have really started to believe I won’t be able to succeed as a person with a disability unless I downplay it as much as I can.

Throughout it all, I worry that because my seizures aren’t “bad enough”, I shouldn’t label myself as having a disability, I shouldn’t speak up, and that I have no right to struggle with something that could have been worse. Recently, I have come to realize how ridiculous this is – for better or worse, this is part of who I am. Being ashamed of living in the gray area between sickness and health helps nobody; it keeps epilepsy invisible, it invalidates my own and others’ experiences, and it makes me feel completely alone. I acknowledge that I am lucky, but I also need to acknowledge that I am not quite “normal” either, whatever that means.

The hour and half long bus rides out to Maplewood to get an EEG, missing class to get an MRI, spending hours on the phone with my mom figuring out how I can pay for my absurdly expensive medication—these are not things I want to be doing with my time. But I also don’t want to be silent about it. Funding for epilepsy and other neurological research is incredibly low, especially for how common they are. I could give some figures, but that’s a discussion for another time. Because so many epilepsy patients live almost completely normal lives, our condition often gets ignored or belittled.

This November, there are a few things you can do to start respecting and helping those with epilepsy. First, educate yourself about seizure first aid, using reliable resources such as the Epilepsy Foundation website, rather than the inaccurate depictions on television—this could save someone’s life. Second, please don’t pity me, or anyone with a disability of any kind. We don’t need your pity we need your support and respect. And finally, acknowledge our existence. I may look “able-bodied”, because in the most literal interpretation I am, but my epilepsy affects my life and the choices I make, and that cannot be dismissed.

– Miranda Adams

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