So what is living with epilepsy really like? Where do I even begin?

When I first tell people I have epilepsy, the reaction is usually met with one of the following reactions: sympathy, annoyance, avoidance or disgust.

In writing this, I definitely don’t want your sympathy or have the time and energy to even address those other three reactions. But I hope it inspires a little empathy, not just for me, but for anyone living with epilepsy. 

It’s a heavy burden to carry, even if on the surface, a person seems vibrant and healthy. It takes a lot of work behind the scenes to get to that point and maintain it. And some people living with epilepsy aren’t even fortunate enough to know what it’s like to have seizures under control. 

I’m one of the lucky ones. I found a medication that controls my seizures, but the story doesn’t end there.

Given there’s no cure for epilepsy, I depend on a twice-a-day pill for my survival. In the last eight years since getting diagnosed, I only missed taking it once and had a panic attack when I realized my mistake. 

Since getting diagnosed after a series of tonic-clonic seizures, I’ve fought hard to be the person I was before epilepsy—the free spirit who could burn the midnight oil and still wake up for a run the next day. That’s what our work hard play hard culture has celebrated for the longest time. 

But my brain is different. I am different. And I finally feel brave enough to be completely open about what living with epilepsy has really been like for me.

My brain the bomb

Imagine for a second that your brain could completely shut down at any time, without warning. That’s how I felt when my tonic clonic seizures first started. I’d be out and about, going to a yoga class or grabbing a water inside of a Duane Reade, when all of a sudden, I’d wake up in an ambulance or a hospital—completely wiped out with a sore tongue. (Sometimes we bite our tongues.)

As a creative my brain is my best friend, but as an epileptic, it’s also a bomb. And it has to be handled ever so gently to not be detonated. 

Before I found a medication that worked, I was afraid to leave my apartment. I was even afraid to go to sleep without friends crashing on my couch. SUDEP (Sudden Unexplained Death in Epilepsy) was on my mind a lot back then, especially given that people with my kind of seizures have the highest risk. 

Although my seizures are under control now, the fear doesn’t go away. Like a shadow, epilepsy goes everywhere I go—swimming, hiking, driving on the highway. 

Before epilepsy, I was such a free spirit. After epilepsy, it’s really hard to completely lose myself in the moment, especially in what have become high risk moments. 

The stigma

When I first got diagnosed with epilepsy, my neurologist at the time told me not to tell anyone unless I absolutely felt the need to. “You will be discriminated against. People may not want to hire you. You’re single, so dating may become more of a challenge if you disclose this to who you’re seeing right away.”

Looking back, I wish I hadn’t taken her advice. Being an artist, sharing my feelings and what I’m going through is just how I’m wired. Sweeping my epilepsy under the rug has taken an emotional toll over the years and keeping silent added so much weight to the burden of the diagnosis.

But she was right. There were a few times where I’ve disclosed in work situations and it didn’t go well. I’ll leave it at that. But there were also times when I was met with compassion and empathy, and those moments are like jewels in my memory. To be seen and understood at work, to not need to hide, to feel supported in who I am is absolutely priceless.

And as far as my love life, the first guy I dated after I got diagnosed was pretty straightforward after I told him. “Listen, you’re amazing, but I want to start a family and I don’t want my kids having that.” 

As awful as it sounded, I appreciated his honesty. 

The control required for seizure control

Part of treating epilepsy is avoiding your seizure triggers. My big ones are sleep deprivation, alcohol, and stress. 

Remember that old me I was talking about? Free spirit burning the midnight oil and going for a run the next morning? That doesn’t happen anymore. It can’t. 

My life has become very regimented out of necessity.

Earlier in my epilepsy journey, when I found a drug that worked, I fought hard to keep up with everyone else like I used to—but at a cost. Even one drink, one bad night of sleep would destroy me the next day. Part of it was the anxiety that comes with knowing I’ve lowered my seizure threshold and the other part was that my life-saving medication comes with a lot of side effects. 

That’s why I finally gave up alcohol completely. That’s why I have to turn down events if they’re after a certain time. Seizure control requires being a control freak and sometimes, it feels like I’m living a half life, especially when I see how much fun the rest of the non-epileptic world is having. Other times, I feel guilty for not being able to support my friends at shows and premieres they’re having. Lately though, I’ve become more accepting of myself. And there is a bright side. I will never, ever have a hangover again! 

Medication side effects

Seizure control comes with another price and that’s in the form of medication side effects. Anxiety, insomnia, depression, crying, aggressiveness, quick to react or overreact emotionally, unusual tiredness—those are just a few side effects from my medication. 

And managing side effects is just as time consuming as managing seizure triggers.

Over the years, I’ve become the healthiest person I know, which has its benefits, but it can also be very restrictive. As new side effects creep up (like my recent issues with insomnia), new measures are taken, like giving up caffeinated coffee. 

Sure, I could take another pill, but my first course of action is going the natural route—making diet changes, changing up my workouts, journaling, therapy, learning to be more compassionate with myself, etc. 

On the subject of working out, that has to happen every day for my brain to work. Otherwise I’m just in a fog. It’s almost as if there’s a net around my brain. 

And eating super clean? That’s another must. It takes a lot of energy to process complex dishes, and while I do it once in a while socially, I pay the price afterwards. 

Even after managing everything perfectly, I’m still not 100% pre-epilepsy me. At best, I’m working with 80% of who I used to be. But that’s okay. Every day that I’m seizure free is a blessing and God wouldn’t have given me this battle if he didn’t think I could handle it. 

The isolation

As you can probably imagine, I’m not a whole lot of fun to hang out with if plans