I told her early on that I had epilepsy, and she wanted to find out more about it. She asked questions, she did her own research, and it was never anything that she shied away from, even though she had concerns.
Do you ever wonder what it is like living with epilepsy in a marriage? Dara, who lives with photosensitive epilepsy, and Angie, her wife, talk about dating, love, and epilepsy.
I have epilepsy, a neurological condition where a person has repeated seizures. The reasons for the seizures may vary, from accident, to heredity, to unknown. Epilepsy is the fourth most common neurological disorder in the world. According to the Epilepsy Foundation, as many as one in 26 people will develop epilepsy at some point in their lives. That’s a huge number of people, some of whom don’t even know that they have it.
And yet, society seems to have very little understanding of what epilepsy is. As a result, accessibility becomes a very real issue in a world that isn’t built for those of us that fall outside of the spectrum of ‘normal’. Navigating life in public spaces can be a challenge, to say the least.
There are different types of epilepsy—not every seizure looks like the tonic-clonic (grand mal) seizure that most people automatically think of. And not everyone’s seizure triggers are the same, either. Some people are triggered by lack of sleep, not eating on time, showering in water that is too hot, or weather that is too cold. Seizures can resemble uncontrollable laughing fits that call the need for hospitalization. Some people have seizures that slowly march through their bodies. And some people have petit mal seizures that cause them to stare off into space.
I have photosensitive epilepsy—seizures triggered by flashing lights, bold, contrasting visual patterns, or overexposure to video games. Only around 3% of people with epilepsy have this type. So, I guess I won the lottery of neurological disorders? This type of epilepsy caused some initial confusion and I was misdiagnosed (a common occurrence for this condition). Plus, as suddenly as the seizures first started, they stopped for a long time until a workplace accident triggered them again.
I tried to hide the condition from my family for a while (easy to do, since I lived on my own) because I was ashamed and afraid. Yet, when I was finally properly diagnosed, it lifted a weight off my shoulders.
I first met Angie online through a dating site. We bonded quickly over a shared love of music, the arts, politics, and life perspectives, and it didn’t take long for us to realize that we really wanted to give our relationship a shot—even though we lived on opposite ends of the North American continent (she in San Diego and me in Toronto). I told her early on that I had epilepsy, and she wanted to find out more about it. She asked questions, she did her own research, and it was never anything that she shied away from, even though she had concerns.
Often, people can live their lives without ever being in close proximity to chronic illnesses, disorders, or disease. I was one of those people until I met my wife, Dara. I don’t recall when she first shared with me about her epilepsy while we were dating, but I remember I had to take a mental pause. To be honest, I had no idea what to think or feel. Here was this woman that I was growing closer to every day, and I knew that I could envision a future with her. At the same time, a small, heart-dropping panic rushed through my mind with the realization that living with her epilepsy would now be a part of my world.
Knowing that Dara had such a rare kind of epilepsy pushed my levels of comfort. It knocked up against my expectation of ‘normalcy’ when I first met her. I waited years, traversing unhealthy relationships to meet her. Sure, I knew we’d have baggage, but not this. Not epilepsy. It scared me. Would I be able to handle this? Would my life change significantly? How would our lives look together? Was it a deal breaker for me? But after the thoughts settled, I knew. No, her epilepsy wasn’t a deal breaker for me.
Dara and I dated long-distance, she in Canada and me in California. The first time she visited me, it happened on one of the nights—she had a seizure. I was suddenly thrust into this moment, and as scary as it was, I welcomed it. It was like ripping a bandage off. It was a moment I had never experienced before, yet it would now become a regular part of my life as I kneeled beside her waiting for the episode to subside. It was one of the most intimate moments of our relationship. We were in this vulnerable space together, although I knew she couldn’t see me witness it. I knew she would have concerns about my reaction and my feelings towards her and our relationship. But we moved through it, and we have ever since.
My seizures are triggered mostly by patterns of light. Strobe lights, especially, are not my friends. Camera flashes are a no-go. Certain 3D movies are also out of the question for me. So are ambulance lights. So, needless to say, I can’t drive. Not unless I can be seizure-free for one whole year. But even if that happens, Angie doesn’t want me driving; she’s rightfully concerned that even though I could be seizure-free for a year, I can’t predict when my next seizure could occur if I started driving again.
Sometimes I get angry about it (not with her). I pride myself on always being independent, so not being able to drive myself around is annoying. There is also a matter of not wanting to burden my wife with having to drive us everywhere all the time. I’m fortunate that she’s been nothing but supportive and has never hesitated in taking on that responsibility.
Her advocacy for me—in all situations—has made me love her more than she’ll ever know. If we’re going out at night, she often calls ahead to find out whether the venue has strobe lights or not. She’s been known to approach photographers and ask them to either turn off their flash or not take photos too close to me. My wife is nothing short of amazing.
I came to the realization that Dara had lived with her epilepsy her whole life and that it was well managed. She lived a normal life successfully. I had to take a step back and respect that she had lived this life without me, and I was just entering into her world. It was not my place to make this some major issue—it wasn’t about me. It may affect me, but in reality, it wasn’t about me. Many of us think that it is about us when we live with loved ones with disorders, which can make our loved one’s journey that much harder.
So, I have had to find my place and my peace with her epilepsy. I have had mixed emotions, including being angry that she has to live with this. I’ve been angry that epilepsy has stolen so many experiences from us as we try to navigate this very ableist society. I still get angry. I had never been so aware of my surroundings as I am today. Dara calls me her “seeing eye” wife! I am hyper-aware of my environment when I’m with her. It has not been easy.
Angie and I are both very social people. We love going out to art, music and other events. She often says that she never realized how many strobe lights there are around us. We both love, love, love live music. This means that attending concerts becomes a logistical nightmare.
I wear what I call my Terminator shades—wraparound shades with an almost black tint—and I keep my eyes tightly closed behind them. Just closing my eyes with no shades on doesn’t offer the protection I need because I can still see the patterns of light behind my closed eyelids. So, the Terminator shades offer sufficient protection for my closed eyes.
This means that I’m blind during our concert jaunts. I stay close to my wife, I dance and sing along to the lyrics just like everyone else, and we always have a blast since we usually position ourselves right up front. Because if I can’t see the musicians, I damn sure better be able to physically feel the music.
Still, I’ll probably never be able to risk attending a high-energy concert like Beyoncé, Jay-Z, or any other concert where the light show is off the chain. And that sucks. But luckily, the music I love most—neo-soul, flamenco, bossa nova, and jazz—aren’t known for having a lot of strobe lights in their concerts. Well, some higher energy neo-soul concerts do, but with my closed eyes and my Terminator shades, I manage!
Plus, there’s the whole question of my quality of life. I’m slightly stubborn, and so I’m determined that epilepsy is not the boss of me. I have to make certain concessions for it, but I’m not trying to let it run my life. Live concerts are my happy place. I’ll be damned if this disorder is going to stop me from seeing my favorite bands in concert.
Dara and I don’t have the same accessibility to a social life as others do. We have had to be selective about going out at night especially. Any place or event at night—even having a simple dinner—could mean someone might use flash on their camera. Many times, Dara has selflessly opted not to go out with me and other friends, knowing that bars and clubs would have strobe lights.
We didn’t have flash photography at our wedding. Dara can’t take a state ID picture at the DMV without risking a seizure because they can’t remove the flash. There is a constant level of anxiety and worry that I have for her. I deeply feel how this tears at her. I have watched my wife cry after a seizure and be angry while worried with guilt about me all at the same time. Those moments are always hard for me.
I have become fierce about protecting Dara, knowing that people around us often don’t know what is going on. We haven’t had many seizure episodes in public, but when it did happen, it was hard. I remember the first time, people walked by assuming she was some drunk on the ground. I can see how it could look that way, but it was a harsh reminder of how callous people could be. It made me once again angry and also made me uncomfortable. What would people think?I thought.
But at that moment, I knew that my wife was not just her epilepsy. I didn’t want sympathy. But really, it didn’t matter because—once again—it wasn’t about anyone else.
I have felt scared that one day she would have a seizure when I was not around and get hurt in public. Even worse, that she would become a statistic of police violence because they wouldn’t understand what epilepsy is and that her disorientation after a seizure should not be perceived as threatening.
Yet, through it all, we have lived our lives and lived it happily. We take one day at a time. We have gone to concerts, dinners, birthday parties. We have managed a social life. Yes, it’s not easy or convenient because we are limited in what we can do, but we do what we can. We still find our quality of life and carve it out. We have found another way to walk this journey together. We hope to bring more awareness to epilepsy and especially her particular kind.
There is so much work that has not been done. I often get annoyed that epilepsy has been neglected and that there are others out there trying to navigate this disorder who feel the same frustrations. In all this, I stay real with my emotions while doing the necessary work in my heart and mind. I am human; I acknowledge it, stay present in it, and then I show up for my wife. I always will.
At the end of the day, epilepsy is just a small part of me. My wife and I may have to make some minor concessions to it, but we both make sure to live a very full life regardless.
About the Photographer
All photos ©Ghia Larkins. Can’t get enough of her work? Take a look at her website, and find her on Instagram @ghiadulcialarkins.