Dating With Epilepsy
“Hey I’m Chloe, I’m a libra, my love language is words of affirmation, my favourite position is doggy, and I may collapse at any moment.”
My friends were trying to convince me to tell the guy I’d started seeing about the seizures I sometimes had. We hadn’t even kissed yet, I surprisingly wasn’t too keen on letting this guy in on my medical history. I was still a pretty private person when it came to my condition, and running through how I might even bring up such seemingly burdensome information amongst the early day fluff solidified my position all the more.
As the independent force that I am it would pain me to ever admit to relying on anybody else for anything, but were these the things I now had to consider when getting to know somebody? Not only do they laugh at my jokes, do our core values align, but do I think they could remain calm under pressure as they drag my unconscious body to some place with no sharp edges?
You never hear people talk about, or see reflected in the media most of us consume, people with disabilities (I could honestly stop the sentence right there) engaging in relationships or sex. Growing up my absolute favourite kind of movies were romantic comedies, if Katherine Hiegl was in it odds are I’ve seen it, and I certainly never remember seeing someone like me represented. It’s not that people with disabilities don’t wanna fuck, or couldn’t possibly run in to humorous high jinks, I think it’s just because the idea of people living with disability or chronic illness boning makes people uncomfortable. The idea of someone disabled getting together with someone able-bodied would likely increase that discomfort tenfold. It’s the whole “Do what you will, but stay in your lane and don’t make me look at it” mentality. Films specifically are often used as a mode of escape for viewers, so it’s likely thought that seeing a character with special needs would just be a “bummer”.
Disability is a shapeshifter that looks different for every individual nestled under her vast umbrella, often evolving over time. Of course I can only speak from my own experiences as somebody who on average has seizures every few weeks, but honestly I think there’s an untapped market here. If anyone reading this is a producer allow me to pitch to you “Seizing in Seattle”, “How to Lose a Guy in Ten Seizures”, “The 40-Year-Old Epileptic”, “Crazy, Stupid, Seizures”, the list can go on and on!
When nobody’s talking about dating/sex with disability you start to wonder if there’s even space for you within that realm. The possibility of getting together with somebody who might need a little extra care is likely not even on the radar of those who don’t. Today please allow me to be your Katherine Hiegl of the intersection of dating and disability that has long been overlooked, and get this dialogue rolling.
Though I would agree that honest communication is key in any successful courtship, talking someone through your medical details (especially somebody you likely don’t know all that well yet) can seem like quite a daunting hurdle. On this one occasion I had gotten together with this guy I’d had a distant crush on for a while. We’d been meaning to hang out for some time but our plans kept getting bumped, yet again when I had a seizure and had to postpone. When we finally did meet up and he asked what had happened I was honest, and could feel him immediately pull away. Maybe it was in my head, maybe he was just trying to respect my privacy, but it felt as though a storm cloud had swept in and shaded everything that followed. As though any chance I had of seeing him again had just been wiped out by my candor.
It’s been suggested to me that I provide complete openness about my seizures to potential suitors; how alarming it would be for them to witness one with no prior information! It was the smart thing to do for my own safety as well, to walk those in my life through the protocol of what to do in the event that I suddenly faint, but didn’t I also deserve an actual shot at gaining someone’s affections? To allow time for somebody to get to know me as a person before becoming a medical patient to be pitied or burdened by? Frankly this neurological disorder was still something I was praying would just work itself out, leave my life as soon as it had entered. In the meanwhile I still dealt with embarrassment surrounding it and any information I were to lend to others about it felt like something that had to be earned, not something that could be entrusted willy-nilly.
This wasn’t how my love story was supposed to go. I was already loud and opinionated, the kind of girl I was always told men would be threatened by. Why then was I the one laden with the cumbersome condition on top of everything. Why couldn’t god have picked some other girl with a voice like silk and a spirit like sunshine to deal with this shit. Since my seizures started a few years ago it definitely feels like the pressure has been kicked up a notch, pressure to make up for days lost to recovery, pressure to exceed all expectations, to make up for any strain I may be inadvertently putting on those around me.
It feels as though I need to portray myself as extra charming, extra sexy, to make up for this unfortunately bestowed syndrome. Prove that I’m not defined by this disability that’s been drastically effecting my life the past four and a half years. What I’m realizing, the more people I open up to, is that from an outside perspective having the occasional seizure really doesn’t seem like that big of a deal to most. To me however, it was a signifier of dependance, lack of control, and general undesirability.
There’s a lot to choose from but if I had to narrow it down to one thing, I’d say the worst part about epilepsy is the unpredictability of it. The not knowing when or where you’re going to have a seizure, not being able to plan for it. Yes I have sustained serious injuries and memory loss from seizures but more than anything the whole thing’s all terribly inconvenient. I’d say the worst timed seizure I’ve ever had was in the middle of sex, at a party, in a house which belonged to neither I nor the other individual involved. I find the idea of having to remove yourself--hem hem--from inside of somebody before getting help, a rather peculiar situation. I blackout during seizures and thus only know as much as others tell me about the incidents, but picturing it from an outside perspective I envision it went something like this.
Allow me to paint you a picture: imagine you’re sneaking upstairs at the social function, consumed by your desire for one another. You’re having a grand old time until, uh oh, one of you suddenly goes limp--no it’s not performance anxiety, something even more frightful! Suddenly her whole body is quaking, is she concealing a bullet vibrator you hadn’t noticed? Oh no, she’s having a seizure! Not exactly the kind of convulsions you want your girl to be having...You know it’s wrong but the shaking is adding a whole new level of sensation you didn’t even know you were missing. It seems a shame to waste a perfectly good orgasm...but priorities here! You pull out of this goddess of a woman and, still with a semi hard on, call for help.
Having to reassure a guy he didn’t rape you isn’t really a dialogue you hear much about, and a difficult one to take part in when you’re still trying to recall what your own middle name is.
This wasn’t the first, and certainly not the last time I would have a seizure in front of somebody I was involved with. I once had a seizure at the dinner table of an ex-boyfriend’s father’s home, fantastic first impression. I’ve woken up in bed with people and not known how I got there, the thought process going something like :Where am I? Where are my clothes? Why are you spooning me? I’ve never been blackout drunk but I’m assuming it would look something like this.
I had a seizure in front of this guy I was seeing, not the ideal date night to have your beau scrape you off the kitchen floor. When I regained consciousness I apologized profusely, acknowledging “How scary that must of been for you!” He looked bashful then put my worries to rest saying “No, not really, you just uhh...you just kept trying to put your hand down my pants...”
You see, after a seizure it’s quite normal to have a transitional period before returning to your conscious self. This phase is officially referred to as the “Postictal Phase” and looks different for everyone. I had a couple nurses once tell me that some individuals can get very aggressive following a seizure, which can look as extreme as throwing punches and needing to be restrained. It’s very common for people to get overwhelmingly emotional and begin crying. For me following an episode I tend to get very, well...horny. Or at least flirty!
I tell people how much I love them, both times my best friend has witnessed seizures of mine I’ve apparently called her “cutie” and kissed her hand. I’ve mentioned how hot I thought a particular guy was. Once I regained consciousness while being loaded in to the back of an ambulance asking the hottie paramedics if they wanted my number. It seems whichever part of my brain has a habit of firing off with overwhelmingly high levels of electrical currents has absolutely no inhibitions.
My mum would talk about being concerned somebody would take advantage of me in my post seizure drunkenness. I was starting to become worried I would take advantage of somebody else. All I’m saying is if you see bright lights flashing in my presence please excuse my behaviour that follows, absolutely no way for a lady to act.
There’s a lot of shame I have associated with my condition, it’s certainly not a chronic illness one may think of as being “sexy”, though it seemed my post seizure state was trying to rewrite that. In past I’ve tried to put off telling those I’m attracted to about it for as long as possible. I know it could be looked at as a sort of filtering system, any guy who’s turned off by me having the occasional seizure probably wasn’t worth it anyways but...I think of how I may react if I were in their shoes. As sad as it is, I don’t think I would blame someone for being a little freaked out by it all.
Maybe the script could be flipped. Maybe for all I know guys could see this as cool, right?...Maybe they’re out telling their boys like “Bro I fucked this girl so good she had an epileptic fit, it was wild bro.” Yes that is exactly how all the men I am attracted to speak.
There was discussion of possibly getting me a service dog which I initially shut down, considering both the responsibility of caring for an animal and how it may effect aspects of my social life quite honestly. While my mum tried to sell it to me as a Paris Hilton-esque purse dog accessory, I couldn’t quite envision myself going out dancing with friends with my medically required canine in tow. What if I met somebody I wanted to go home with? Would rover just sit in the corner while we make sweet, albeit slightly awkward, first time love? Would I have to start carrying a ziplock of kibble around in my purse? I suppose puppies are kind of babe magnets to be fair...
Your twenties are when you’re supposed to figure out the stomach-churning westernized ritual commonly known as “dating”. This period in my life unfortunately just had to coincide with me figuring out how to also live with occasional epileptic episodes. Why did my seizures have to enter my life right as people started to want to have sex with me? Like god, fine I’ll accept this shitty hand, but at least let me get my fill in first.
I’ve been incredibly lucky (not that luck should be equated with experiencing human decency but) with those I’ve been in the company of when a seizure comes a knocking. I’ve found most people to be incredibly understanding and protective of me when needed, but I don’t want to have to pray for luck! I don’t want to be cautious. I want to be reckless and spontaneous. I want to be stupid and go home with the wrong guys, make the ill-advised decisions. I want the option of learning lessons the hard way, and to not miss potential experiences to remain on the safe side. I don’t want to have to cancel dates because I gave myself a black eye when I fell, or have to explain to onlookers that my male companion was not the one who battered my face.
I think what I’m learning from this all is that to be aware of the extra care some individuals amongst our social circles and dating profiles may need, isn’t to “other” these people, or set them aside in to another perhaps more demanding sector of potential lovers. I think it is an invitation to examine what specifications and special needs we all ourselves may seek from a partner. Some people can only climax from using a certain toy from their collection, or enjoy being held for a while before clean up after sex. Some of us like feelings to be verbally communicated with a partner, and for others actions speak louder. Some of us may need to be reminded where we are once we regain consciousness, or assisted in cleaning out the blood that dripped from the gash on our head on to one of our favourite shirts. Whatever it may be, set the standards high for yourself and don’t feel hesitant in making your needs known. To foster a community of care and understanding is to welcome the same kind of care for yourself and vice versa.
Sex is messy. Dating is horrifying. We all come with our own baggage. I have a friend who once puked on a guy’s dick. Shit happens. My shit just happens to have a medical classification.