Acceptance and Empowerment: My Epilepsy Journey

I am a 35-year-old female from New Jersey who has lived with epilepsy for 20 years. My first seizure happened at 15 during a high school dance practice. I woke up on a stretcher, terrified and confused, not knowing where I was or who I was. That seizure led to an EEG and MRI that revealed abnormal brain activity and bundled nerves. The neurologist checked for brain tumors, but none were seen. I was later diagnosed with generalized epilepsy, something I had never heard of at the time. The neurologist asked questions like did I ever bang my head. I did not. My only thought was, I was a two-pound premature baby. The neurologist felt that if that was a factor, I would have started having seizures as a toddler. My diagnosis for the epilepsy is unknown. My seizures are tonic-clonic and catamenial epilepsy.

I had to give up everything I loved: dance, cheerleading, and track. I was on my way to run at Penn-Relays when this all transpired. I was an aspiring track star, and that all went away.  At 18, I started college, trying to move on with my life.  I had a seizure in a math and history class. Doctors then recommended I see a neuropsychologist, who gave me puzzle pieces, math problems, and a lot of critical thinking. She sat across the desk and examined me as I tried to solve the problems. I would often zone out as I felt auras. I remember her asking if I was okay, and I let her know that I was not. I could not complete the math problems. Algebra specifically became a trigger. She then later graded my math problems, which were below average. My doctors tried working with the college to get accommodation for math, which allowed the use of a calculator and more time to complete work, but for me, nothing worked as far as math is concerned. I ended up failing math class. I even tried getting math waived as a requirement for graduation with no luck. There was so much going on that I ended up dropping out of college. I fell into a deep depression, feeling an overwhelming amount of distress. 

Over time, I became increasingly unhappy. I had developed low self-esteem. Self-care was non-existent; I simply didn’t care anymore. I repeated the same clothing, had suicidal thoughts, and exhibited erratic behaviors. Some of these changes were due to medication, and some were due to my hating my life at the time. I lived a miserable life, which led me to a psychiatric hospitalization three times from 2017-2019. Constant ER visits became the norm. Doctors criticized me, telling me I had anxiety issues, and I became a revolving door patient.

 As if things could not get worse, I had a seizure that took place at home, midair, while walking down a flight of stairs. I walked away from that seizure with only a black eye and a busted lip that needed to be stitched. Doctors explained that I fell face-first onto the floor. Luckily, there were no fractures in the face and no broken teeth, and it was a miracle to have survived that. I knew at once my life had purpose and meaning. I tried holding on to some sort of faith. I applied to take the Civil Service Exam. I had always wanted to be a police officer. Criminal justice was my major. I passed the exam and was recruited in 2016 in North New Jersey. However, I did not have a driver’s license, and the officers were more concerned about my ability to complete the police academy due to epilepsy. It was then that I had identity issues. I was trying all I could with my life, but I did not know who I was anymore or what I should be doing. I became hopeless and overwhelmed. It was as if I was allowing epilepsy to dictate my life. I started to rely on different coping mechanisms like smoking and drinking — things I was prohibited from- but I did not care anymore. I felt defeated. 

Writing eventually became my refuge. I published my first book in 2016, a moment of joy and validation. Unfortunately, I had a seizure while writing my third book and learned that screens were a new trigger, but I never gave up. 

At 26, I suffered a stroke in my right cerebellum and lost the ability to walk. Doctors were stunned—it didn’t make sense. That moment changed everything. With my family’s love and support, I began to rebuild. I stopped drinking, quit smoking, and committed to therapy and physical rehab. I got back on my feet and took control of my health. Today, I manage my epilepsy with three daily medications and a vagal nerve stimulator. I have had seizure-free periods lasting years.

Living life with epilepsy can be debilitating. Friendships and relationships have faded, but love and commitment to myself will never fade. I have found strength in solitude. I eat clean, exercise, write in a journal, and stay grounded. I would not have been so vocal about sharing my journey with epilepsy 20 years ago. I no longer hide my condition. I embrace it. It is an invisible disability that brings an opportunity to tune in with yourself. I want others with chronic illnesses to know you are not alone, and you are not your diagnosis. It is part of you, but it does not define you.

Living with epilepsy involves mental, physical, and emotional challenges. It’s hard to hear, “you’re just nervous and overreacting.” It’s easy to feel like a burden while crying, sleeping, experiencing fatigue, and dealing with auras, tremors, and migraines. There may also be added stress, job and financial loss, discrimination, and denial of disability benefits. My biggest wish in life is for epilepsy to receive the awareness it deserves. I have turned pain into purpose. I am still a writer. I am still a dreamer. And I will not let epilepsy control my future.