I’ve had epilepsy and suffered from seizures my whole life, but I didn’t know it until I was 20. Epilepsy is truly an invisible illness. Unless I have a convulsion in front of you, you won’t know. I didn’t know for nearly half my life! I am eternally grateful that I had my childhood as a “normal” kid. I was still sick but at least I didn’t know it. I didn’t have to go to multiple doctors and have brain scans and blood tests. I didn’t have to spend endless days and weeks in the hospital connected to electrodes like a cyborg. All that came later. As a kid, I was just a kid. I think longingly about that sometimes. Once, there was a time when nothing was wrong with me. Except that there was still something “wrong” with me. I just didn’t know it. That’s how elusive epilepsy is. Even people living with it for 20+ years don’t know.
Now that I do know, my childhood and young adult memories are tinged in blue with a sense of fear and dread. I am afraid of what could have been. I lived a dangerous life not knowing I was a “fall risk,” among other things. I remember having hundreds of seizures but not knowing what they were. Even when my neurologist first told me that these “auras” were actually seizures, I didn’t believe her. I thought they were just feelings. I thought, “Feelings can’t be seizures.” FALSE! Some seizures are basically feelings; very bad feelings. They are called simple partial seizures. But I didn’t believe that for YEARS. That frightens me now. There were years of unknown seizures, unknown risks. Everyone has their own tolerance for risk. My own risk tolerance has shriveled and I shiver to think of the risks I didn’t know I was taking with my own life and other people’s lives.
I used to be a certified lifeguard. I LOVED being a lifeguard. I was so gung-ho about being a lifeguard, I used to guard my parent’s 10ft wide by 30ft long pool. I blew my whistle at my friends and family in less than 5 feet of water. My sisters still make fun of me. I took my job of guarding lives very seriously. I now know that I should NOT have ever been a lifeguard. But I didn’t know that then. I justed wanted to make sure everyone was safe around the water. I didn’t know that I wasn’t safe around the water.
I remember sitting in my high school pool lifeguarding, as wave after wave of simple partial seizures washed over me. The thick smell of too much chlorine always takes me back there. The whole room would echo and ricochet with odd, seizure feelings. I would spin my whistle on my finger, around and around. Suddenly, the entire pool would morph and look unfamiliar. I was well acquainted with the pool. I was on the swim team; I had spent many, many hours there. But things would spin and it was like I had never been there before. Things looked completely different, new. It was the opposite of déjà vu. The French call it jamais vu, the never seen. At the time I didn’t mind the experience, it felt like I was watching it happen outside of myself. “How odd,” I would think. I would watch the water and my mind would flow. I had no idea I was having seizures. It could have been terrible.
Thankfully I, and everyone else, was safe. There were no emergencies during my years as a lifeguard. Still, I feel posthumously guilty. I am very glad that I never got the job at the beach that I wanted. The stakes would have been much higher out in the open waters of Lake Erie. My writer’s mind always makes me wonder, what if… It pesters me with these dangerous thoughts; they fester in the back of my mind. What if one of those multiple seizures had progressed to something worse? What if I had lost consciousness?… The answer to those questions is not pretty. People could have died. I had no idea.
Swimming and lifeguarding were essential parts of who I was, of who I thought I was. One time when I told a friend that I used to be a lifeguard, she looked at me with horrified with wide eyes. She thought it was wildly irresponsible, dangerous, and maybe even slightly evil, that I had been working in such a position. If I had known, I NEVER would have become a lifeguard. But I was a different person then. I was a normal healthy person. I was a person that was in full control of their body and mind at all times. That was the lie I believed to be my life. But it wasn’t true. I just didn’t know any better. I had hundreds of missed seizures, the clues unseen, the signs obscured and ignored. My memories of these mixed signals haunt me. I don’t like thinking about what could have been or what should have been. I should have known.
Whenever someone tells me they are experiencing a strange sensation or déjà vu, I always tell them, “It might be a seizure.” People don’t usually appreciate it, but it is true. They need to be told. Be aware: some odd feelings are actually seizures. Beware. Sometimes the lifeguard needs guarding too.