Cancer is a thief. It steals away time, happiness, relationships, experiences, and energy. Prior to my diagnosis of grade III RELA+ Anaplastic Ependymoma, I experienced what we now know were absence seizures. When my seizures started, they were only about 20 seconds or so in length, and they only occurred a couple of times a week. Eventually, though, these seizures grew more frequent and severe. At the time, I was a junior in college at the University of Tennessee, Knoxville. Before my tumor was found, I was told the symptoms I was experiencing were most likely symptoms of a panic attack. When I experienced seizures at school, I felt embarrassed. I was self-conscious about the way I looked during them. I would zone out, be unable to comprehend speech or verbalize anything, and sometimes become so disoriented that I did not know where I was.
I remember one time after work, I was at Subway picking up dinner on the way back to my apartment. I was in line, telling the worker what I wanted on my sandwich, and I had a seizure. No one around me noticed because I was able to conceal it somewhat. I could feel it coming on, and there was nothing I could do to stop it. I remember just stopping and staring, and not responding to her for a while. It felt like I was stuck, frozen in time. I heard things around me, people talking, but I could not understand. I was paralyzed inside of my body. My body still working, but my mind was turned off. I just stared. Somehow, I was able to mutter out, “red stuff,” trying to explain to her that I wanted tomatoes on my sandwich. Coming out of the seizure, I still couldn’t understand or comprehend what to do next, what else to ask for on my sandwich. So, I paid for my sandwich, left, and tried to forget what had just happened. I felt embarrassed as if having the seizure was my fault.
As scary as it sounds, and it was very scary, that was one of my more minor seizures. To this day, I have never stepped foot in that same Subway, and I never want to again. Anytime I even came close to being near that Subway, I would choose a different route and would try to block it out. Now, anytime I have Subway, I am brought back to that time when I felt frozen, paralyzed, embarrassed, and confused. It will forever just be one of those triggers that brings me back to that time and place where I felt so alone, so trapped, and could not escape.
One of the most severe seizures I had occurred when I was walking to class. I remember having the seizure right before class began. I gripped the desk as I felt it coming on. One of the scariest parts of having a seizure is knowing that it is about to happen, but you have no control over it. I got to a point where I would feel one coming on and just lose all hope. I felt trapped and like nobody understood or could help me. Eventually, I was able to text my mom, although it was complete gibberish. Ultimately, this seizure is what led me to get my MRI (finally, it was about time). I had so many seizures on campus. I had them in my apartment, at work, in restaurants, in class, walking around campus, literally everywhere. I had so many seizures, that anytime I think about campus or set foot on that campus now, it automatically brings me back to that dark time in my life when I was sick and did not know it. My life was limited, the seizures and the sickness were debilitating. Cancer robbed me of my college experience. Because of that, I hate going back to where I completed my undergrad degree, and I always will. I hate cancer for that. I hate that it has so much control over me, my life, my mentality, and my choices.
Flashbacks are something that I have experienced every single day since my craniotomy. Every single day. I cannot escape. The thoughts consume my mind, and they wade there like it’s their territory. I try to push them out, to distract myself, but all that does is make them more angry, more persistent. When I think about my surgery, the deficits I faced, and the things I experienced during radiation and chemo treatments, I feel physically ill. I am taken back to that time, and it is as if I am re-living it all over again. Sometimes it feels like I am watching myself experience it, and other times it feels as if I am in my own body going through it all again. I can smell that same strong perfume of the nurse that took care of me in the hospital: it smelled like vanilla and citrus-y fruit. I still taste the hospital food; I still feel myself waking up to realize that my peripheral vision on both sides was gone. My body still aches, as if I am getting out of the bed for the first time and attempting to walk on my own. I still feel the confusion as I try to turn on the faucet and hold my utensils properly but can’t. I still feel the frustration and sadness as I try to read but can’t get my mind to work. I scream, and I scream, and I scream, but it’s all internal, and I realize that no one can hear me. I’m all alone. It’s dark and it’s cold. I want to leave, but I can’t. I want to get up and run away, but my body doesn’t allow it. Why can’t anyone hear me? I’m back in that place, then I realize I’m not—I’m here, in the present, but I’m still trying to run away.