Epilepsy & Photography
I have epilepsy, but please don’t call me an “epileptic.”
Over 3 million other people living in the US are so much more than the stigmatizing term. We’re members of society that function as more than a joke when you see lights flickering in a room.
Truthfully, it took me over ten years to accept that I am living with epilepsy, which made my life more difficult. Sure, I took my medication each night, 300mg Zonisamide, and had my routine check-ins with my Neurologist every six months, but that was the extent of my epilepsy self-care routine since being diagnosed at age 15.
Not wanting to deal with my epilepsy was selfish. My family and friends who loved and cared for me constantly worried about me for not doing so. Admittedly, I felt that it was an extra burden that life had presented me, and I didn’t want to handle it. I couldn’t handle it. The medication controlled it [epilepsy] for me, so why did I have to take extra steps? How naive. While the medication was controlling my epilepsy, it came at a cost. Side effects that made each day wildly uncomfortable. Experimenting with new medications caused me to lose my personality. Visits to the hospital because I developed kidney stones as a side effect. The list could go on.
Growing up, I never felt like I fit in, and my diagnosis certainly didn’t help that case. I started partying and staying out late in my later college years, mixing alcohol with my medication and sacrificing sleep for a good time that was to be forgotten in an instant because I was partying and because, well, my epilepsy affects my memory.
I also fell in love with photography in my later years of college. My senior year, to be exact. I found my place and my passion in life. Something I had been searching for, for what had felt like a lifetime. My denial that I was impacted more by epilepsy than I had let on to myself and others, paired with my creative drive, fueled terrible habits as a young adult. I was overworking myself and masking it by calling it passion. While photography is undoubtedly my life passion, sacrificing my well-being is not. I was shooting every day, taking no breaks at all, and began working with local musicians, eventually working my way up to more prominent artists. I exposed myself to excessive lights, late nights, early mornings, and alcohol, knowing that I shouldn’t, but my tenacious work ethic wouldn’t let me say no. Because I wasn’t taking proper care of myself, doors were closing for me as fast as they opened, and I was burning out. Hard.
At 26 years old, I now understand the importance of taking my epilepsy seriously. While I may not define myself by my epilepsy, I no longer feel the need to run from it out of fear or shame. That includes not turning myself into a joke so others who don’t understand epilepsy can’t turn me into one. I accept myself for who I am, and honestly? I love that for me. My younger self needed that more than he ever knew. Taking care of myself nowadays looks like prioritizing sleep instead of staying up until 3 AM editing photos. I make it a priority to eat enough throughout the day and drink enough water. I used to take my medication whenever I remembered to, but now I set the alarm for 8:30 PM every day and monitor my screen time to reduce the chances of a migraine.
Oh, I ditched the flash photography phase, too. No more six cups of coffee a day, either.
I’ve slowed down. For me, a slower life is a well-balanced, happy, successful life. I’ve realized that my journey is my own, and nobody can define that for me but myself. The pace I go is up to me, and that’s okay. I prioritize myself nowadays, and I’ve found a particularly healthy relationship with epilepsy and a much healthier relationship with my photography career.
I vouch for living fearlessly.
Not recklessly.
