By Ryan DeLoughry

Every day before I walk out the door, I check my pockets for my keys and wallet to make sure I have everything I need for the day. Growing up, I saw my parents and many other adults do the same and the system worked pretty well. I can’t recall too many times when I’ve been locked out of my place.

Then, before I leave, I tap my chest. I’m checking for my medical jewelry. Buried deep under my clothing, it’s the only outward indication that I have epilepsy. While it’s only a cheap necklace with a small pendant, for much of my life it’s been a millstone around my neck. The term “epilepsy” is a huge umbrella, covering 3.4 million Americans, affecting them in a multitude of different ways and with varying severity. About 150,000 Americans get an epilepsy diagnosis each year. If we all got together in one place, we would be the third largest city in the country.

I am keenly aware that I am just one guy in that metropolis, and for much of my life, I felt as though I occupied an awkward position in the community. Fundamentally, I consider myself extraordinarily lucky. I have been able to experience almost everything someone with “perfect” health would experience. I attended school regularly, played baseball competitively for about 15 years, and now work in my chosen industry.

Attending events in the epilepsy community, looking at epilepsy pages on social media, or even going to my neurologist’s office conjures up deep feelings of guilt. Many people with epilepsy suffer seizures multiple times a day, every single day of their lives, severely limiting their ability to achieve even basic independence, and in some cases even threatening their lives. For many years, it felt selfish to consider my own feelings toward epilepsy while so many others suffered exponentially more.

But there have been times that I’ve had a different point of view. After I was diagnosed at age 11, I recall lying to my parents about the frequency and severity of my seizures, fighting with them to let me go to school one morning after a 4 a.m. seizure, and just generally convincing myself that my epilepsy “wasn’t that bad.” I would experience a reality check when I woke up in the hospital, my face battered and my mind hazy.

Retrospectively, I’m not sure what “right number” of seizures would have allowed me to address the emotional strain that accumulated over a decade with epilepsy. Regardless of my deteriorating emotional state, I held fast to my common refrain: Others had it worse.

This way of thinking came at a cost. I remember being terrified of letting my teammates down when I stood on the pitcher’s mound and felt an aura coming on. I remember being suddenly unable to understand what the teacher was saying in school, gripping the desk until my knuckles turned white, praying that the feeling would go away and nobody would notice. When I began working the summer before college, I dreaded the thought that a seizure would render me unable to do my job.

In those moments of intense fear, I engaged in an emotional bartering system with my epilepsy. Let me have just one more inning so I can help my team win; let me finish this lesson so I can pass the test; let me get through this shift so I can collect my paycheck. Give me normalcy for a short period of time, and you can take it from me later, when it’s more convenient. This internal emotional warfare became exhausting.

In the summer of 2018, as a new college graduate, I was eager to begin my career and settle into the beautiful chaos that is New York City. But internally, I was yet again terrified of failing to achieve the goals I’d set, goals that epilepsy could thwart. Then, less than a week before I moved into my apartment, I saw on social media that an acquaintance had taken her life.

She lived with epilepsy as well, and although I never met her in person, we spoke online about our experiences. She was one of the only people who I talked to me about the side effects of medications, the awkwardness of perpetual sobriety in college, and dating with epilepsy. Her death hit me hard. And although I didn’t know what ultimately drove her to end her life, we both experienced similar struggles. Learning of her death and remembering our conversations forced me to reflect on my own life. Again, I was terrified, but for a different reason. I was afraid of what epilepsy would continue to do to me emotionally if I didn’t address it.

A month later I scheduled my first therapy session.

From that day on, I’ve kept a journal on my phone. It isn’t any sort of literary work, just a few fleeting thoughts I want to capture after a seizure or reflections while I wait on the platform to squeeze myself into a packed subway car. The first entry begins, “today was the day I finally broke.”

Looking back, the paradigm shift between now and a year ago when I began my journal has been astounding. Instead of feeling like I was “broke” or lost my emotional war against epilepsy, I look back and realize how distorted my outlook was. I was incapable of accepting that although my epilepsy is not the most severe form of the condition, it still warrants recognition. It cannot be dismissed as a nuisance. It is a fundamental part of me. To reject it would be to reject myself.

It has taken me over a year of therapy with an amazing doctor and the help of an incredible girlfriend to come to this point of self-acceptance. Pride, immaturity, and an abject fear of vulnerability forced me into a decade-long, silent war against epilepsy.

You may have a seizure every day. You may not. You may have every opportunity your peers do. You may not. You may have tried one drug and gotten your seizures under control. You may have tried eight drugs and your seizures still haven’t stopped. Everyone’s epilepsy is different, but that does not negate the fact that even relatively mild epilepsy can cause extreme anxiety and fear. Because there are a few broad truths about epilepsy, its emotional effects are undeniable, and it is an especially frustrating disorder, no matter what form it takes. It’s astounding how little the scientific community knows about the brain. Another sobering truth is that epilepsy has been linked to higher rates of anxiety, depression and suicide.

So today when I left my apartment, I still check for my wallet, keys, and medical jewelry. But I also checked the status of my emotions. It isn’t an elaborate routine. I just ask myself if I’m OK. Am I feeling stressed about a recent seizure, an upcoming EEG, or a visit to my neurologist? Is there any other stress in my life? If I’m not feeling 100%, I practice feeling a little bit of compassion toward myself. While I’m certainly not the picture of Zen and there are some days that are still hard, practicing this short ritual has been incredibly beneficial to my wellbeing.

Since I’ve fully accepted my epilepsy and began speaking truthfully about its emotional effect on me, those difficult days are much fewer and far between. The change in this past year has been extraordinary and long overdue. My anxiety and fear have become more manageable. I’ve accepted myself fully and it has made my job, my relationships, and my life overall a lot more enjoyable. I hope that someone reads this and won’t be as stubborn and silent as I was.

Speak out. Seek help. When you see your neurologist, tell them about your seizures, but also talk to them about your emotional health. If you don’t know where to turn, call an epilepsy hotline, or make an appointment with a therapist. I certainly wish I had sooner.

Ryan DeLoughry is from Westwood and has lived with epilepsy since 2008. He’s currently an economic consultant in New York City.

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