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epiRecently, I read a contemporary romance with an epileptic heroine. I’m not going to name the book/author because I don’t want to make you think this is all about her or just this one book. Although that book triggered this rant because I deal with epilepsy myself, the problem is a common one.

The heroine’s name is Faith, and the information we know about her as an epileptic can be summed up in three points:

  • She’s been having seizures at least since third grade (age 8)
  • She was still having seizures at age 12
  • She was still having seizures in high school (starts at age 15)

These are all points of information we’re given so that we know she had an uncontrolled seizure disorder for a minimum of 7 years. We also “see” her have a seizure as an adult, but we’re told that’s because she didn’t take her meds for a couple of days because she ran out. (More on that in a minute.)

Now, let me first say that I didn’t expect this heroine to have the same experience of epilepsy that I have had. People with disorders, illnesses, disabilities are not monolithic, which is precisely what makes them interesting. I was eager to see what kinds of choices the author would make for Faith and her family. Because make no mistake, no matter what your experience of epilepsy, it affects family even if you don’t contract it until adulthood; when those having seizures are children, it’s worse. Especially if the seizures cannot be controlled, which seems to be the case with Faith’s.

And I say “seems to be” because we’re never given any insight into how Faith, or anyone else in the family, has dealt with her epilepsy. Someone with as many seizures as she seems to have had would never be allowed, for example, to swim without a trained lifeguard. And she’d have been a LOT more interesting as a character if when talking about how she’d gone swimming in the lake as a kid she’d explained that she’d had to sneak away to do so since she wasn’t really allowed to swim just with other kids. But the author didn’t say that. She just blew off all the safety concerns–and legal concerns–associated with seizure disorders. Faith does all the stuff every kid does, including babysitting.

We never know how old Faith is when she finally gets her epilepsy under control. But the assumption is that she does have it controlled at the beginning of the novel since she’s driving around with nary a care in the world.

So here she is, this heroine that I am supposed to identify with. And she doesn’t bother to refill her prescription, so she has a seizure. And, given her father’s reaction, it isn’t the first time. And I sit there and go…”REALLY?” Seriously. If this had been a paperback, I’d have thrown it. But it was on my Kindle and that’s too much money.

PillsBecause while some people are non-compliant with their meds, those people are rarely allowed to keep their driver’s licenses. They’re also frequently suffering from some other major disorder like depression (which, by the way, is extremely common in the epileptic population, so it’s worth paying attention to if you’re writing an epileptic character–she doesn’t have to be depressed, but chances are she has some emotional issues or has been through therapy). People who are as well-adjusted as Faith is portrayed don’t simply take a couple days off life-saving medication because they’re too busy to pick up their refill. What would happen if she were driving when she passed out? She’s portrayed as being almost goody-two-shoes, but someone who really cared about others wouldn’t behave that way.

And even if your prescription runs out, pharmacies–especially a pharmacy in a small town where everyone knows you and knows you have seizures–will give you a couple of pills to hold you over until your doc can call in a new one. This isn’t true for all drugs, of course, but anti-convulsants have very little street value.

I was diagnosed with epilepsy in 1984. A friend of mine was diagnosed last year. We were both told the same thing among the first directives: no booze. None at all until your seizures are controlled, and once they’re controlled, a glass here and there is fine, but enough to give you a hangover is enough to give you a seizure (basically, a hangover is your body withdrawing from alcohol, and it lowers your seizure threshold dramatically). And yet…Faith drinks. She gets buzzed on martinis. She takes a bottle of wine out of a party to console herself mere DAYS after having her seizure.

Let me be clear: I have no problem with an epileptic character who drinks. But for goodness’ sake, make her self-aware enough to understand what’s she is doing. It’s like the swimming. I just want some sense that the author hasn’t simply co-opted the “useful” parts of a complex and often devastating disorder as plot devices.

I don’t consider my life all that different from the lives of people without epilepsy in the grand scheme of things. I take a couple of pills a day, every day. I carry extras in my purse. I have little packets in my suitcases just in case I forget to pack them or they fall out of my hand luggage. Every couple of years, I get an EEG. My drugs are expensive, so I pay higher insurance premiums to get better coverage for them. But overall, you could write about my daily physical life without me looking much different from any other character in your book.

But you couldn’t write about my emotional life–and that’s what romance novels are supposed to be about–without paying heed to things like the way the drugs make me fat and tired and how that’s made me feel. Or the way that other drugs have made me lose my memory and my hair. Or the way that even though my seizures are well-controlled, I still look up every time I hear someone ask “are you okay?” and check to be sure they’re not talking to me.

There are things I cannot control, and I know I cannot control them, and I am reminded of the fact that I cannot control them twice a day every day when I take those pills. No, I don’t think about it that way, but if you imagine for even one second that it doesn’t affect me, that I am not aware of it, you’re wrong. Regardless of what  her experience of epilepsy is, every epileptic has a relationship to her disorder that is just as important as any other relationship in her life. (And, like any other relationship, it’s apt to change over time.)

And that’s true of any disorder, disease, or lasting injury, not just epilepsy. If you want to write an epileptic character, I’d be happy to talk to you about my experiences, my friends’ experiences. I can direct you to forums with people who will talk to you. If you want to write this stuff, for goodness’ sake, research the emotional impact, not just the physical symptoms and jargon.

Don’t make me throw my Kindle, and don’t co-opt my disorder for your plot device.