One of my biggest fears now, and since my diagnosis, is having a seizure. Obviously, I don’t want to have one anywhere/anytime, but my fear is that of having a seizure in public.
The vulnerability I feel when in the post-seizure state (“postictal”) is horrific. I don’t know where I am, who I am, who the people are around me, etc. Once, after a particularly intense seizure, both my mother and sister were sitting on my bed. Luckily, I was in bed at the time, so I didn’t hurt myself after losing consciousness. I frightened my sister so much and undoubtedly saddened her as well because, for the longest time, I just stared at her, unable to recall who she was.
A lot of the trauma I am currently working through with the help of my psychologist is the initial seizure. Currently, I can feel a seizure coming on. There are indications I’ve learned to recognize, often referred to as auras; these help me to take precautions so as not to fall and injure myself. In Chicago, when the first seizure occurred, I had no idea what was happening. I simply hit the deck. When I awoke, I could feel a rocking sensation and the hum and vibration of what I had come to understand as an engine. This knowledge didn’t help, as I had no sense of identity.
The paramedics had rummaged through my belongings and found my ID. This helped them understand who I was, but when they said “Mr. Ray,” I was unsure who or what they were referring to. “Mr. Ray, have you been doing drugs?” They asked this question repeatedly. I struggled, as I often do when regaining consciousness, and since they had no idea if I was, in fact, on drugs, they had me strapped down to the ambulance stretcher. Later, when in the ER, I discovered the cuts on my wrists from having struggled so much while in transport to the hospital. Again, they asked, “Mr. Ray, have you been doing drugs today?” I began to cry. “Mr. Ray, do you know what year it is?” I mumbled something, but I was unsure of what year it was. When I began to come around and gain a greater sense of who I was and where I was, I told them I was a graduate student studying in Chicago. I am sure the latter was evident in Chicago, but this helped them understand more. Finally, one of the paramedics said, “Ok, Mr. Ray, we’re going to untie your arms, ok?” Sometime later, well after I was in The ER, one of the paramedics came to see me. I didn’t recognize him, obviously. “Hi. Mr. Ray,” he said. I am sure he had found out, after inquiring about my toxicology report, that the only drug in my system was caffeine.
I currently wear a medical ID. This simply states that I suffer from grand mal seizures. This isn’t enough for me; I want it obvious that my medical condition is such that I was a cancer patient, and one of the ongoing ailments, perhaps an ailment for the remainder of my life, is seizures.
… I purchased the credit card-sized ID badge and a lanyard. As I gain more emotional and psychological confidence and the much-needed physical stamina, I hope to continue my walking routine, an oft-daily event that I greatly miss, which helps me process much of the events that have occurred over the past few years. I want the ID to be so evident that, should I have a seizure when out and about, my medical condition will be event, glaringly so. I have faith in my fellow man/womxn that, in such an event, I will be comforted and cared for until I regain a sense of who I am…
The thought of waking without knowing who I am, or even what I am, haunts me. The fear of being strapped down during this postictal time is even more so. The vulnerability, as mentioned, is so great that this prevents me from my outings — any outings, be they a trip to a cafe, to take in a movie, etc. I don’t want this fear to become so great that I avoid leaving the house. Currently, I can see this is where my fear and the ever-growing feeling of vulnerability are leading me.
The aluminum, bright red ID card, which I’ll wear around my neck on the outside of my clothing, will hopefully let me inch out more and more and break this paralyzing fear encroaching upon my life.