November is Epilepsy Awareness Month. In hopes of raising awareness on how epilepsy touches a life, I am posting my initial experiences with seizures. I encourage you to search the web for other stories to learn how epilepsy can touch any life at any age. Seizures are not something to fear, but something we do need to be educated about. Here is my story:
I remember the first time I experienced waking up to strangers. I was 15. I remember the worst time I experienced waking from a seizure. I was 27. These are the earliest and most poignant times I recall not remembering faces. This was what I consider my early introduction to life with prosopagnosia. I had the opportunity to experience this condition in short, slightly drawn out bursts of non-recognition. This helped prepare me to handle similar situations later in life when I completely lost my ability to recognize faces.
When I was in the 8th grade, I started having “spells”. I described it as an odd sensation that overcame my body. Next, would come a feeling as if I were in a television commercial. I knew who I was. I recognized the environment that surrounded me. I even knew all of the characters in the room. But somehow, I could not grasp that I was part of these surroundings. As I said, it felt as if I were viewing a previously watched commercial on television; a sort of deja vous. I was very aware of it. I felt a close familiarity to the happenings around me. Yet I knew, within my mind, I was not part of it. I was on the outside, off in the distance, peering into what I saw. Each time, quickly after the sensation would pass, I would feel tired. I would pat my face and count my fingers. It calmed me to realize I was there complete.
I was sent to doctors. I was prescribed medications. I was told that maybe this was all in my head. People had hoped, as doctors had suggested, that I would outgrow whatever this was. They were hopeful to not have to place a label on me.
The dreaded label could not be denied for long. When I was 15, I had an undeniable gran mal, tonic-clonic, seizure. I was in bed trying to fall asleep. I had a “spell”. As I was coming out of it, I called out to my parents. It did not feel right. I did not feel right. I knew that something in me was not okay. I patted my face and counted my fingers. The numbers did not add up. There were no longer ten. I was very scared. Then, there was darkness.
I woke up in the chilly night air. It felt as if I were floating. Somewhere off in the distance, a gruff voice was mumbling, “There she is. Tara, do you know what day it is?” Oh, how I hurt. Why was everything so foggy? Where was I? Someone, please, help me! I am scared. What is going on? Why can I not speak? I was feeling an intense level of panic start to come over me. My thoughts were spinning as rapidly as my hazy mind would let itself process the clues. Who is this man that is talking to me? I have seen him before, haven’t I? “You are going to be okay,” this voice continued speaking. I know that I have seen him before. It was dark though, and I was still very confused. His face became clearer as the fog slowly lifted from my mind and my vision. Where is my mom? My dad? I am so scared. Wait. Slow down. Why do I hurt? I am so tired. I just want to sleep.
Soon, I realized I was not floating. I was being rolled on a stretcher. Those lights flashing outside were on an ambulance. I live in a small town with a small ambulance team. All of these thoughts were processing at a lethargic speed. That voice, yes, it is familiar. He must be a doctor. No, a paramedic would be in the ambulance. This is my town. Something has happened to me. That is my uncle. This has to be my uncle. He is the main paramedic in our town. Could this be my uncle? Slowly, I was fighting to keep hold of his words and not fall asleep. I was scared at the lack of recognition to the world around me. Yet, at that stage there was still more fright and concern as to what was happening to my body and my mind.
Seven years after this event, I married my husband. I explained to him that if I had a seizure, he should never call the ambulance. It was too frightening. The sensation, itself, of slipping into a tonic-clonic seizure was frightening enough. Knowing that I was slipping away carried with it a very fearful feeling. But I always dreaded the wakening: When I would wake to a room full of strangers asking too many questions at too rapid of a pace. These questions, these faces and the possible answers were all beyond my level of comprehension in the postictal state. Even if I knew the people, there would be the moments of muffled confusion that would leave me all alone in a room of perceived strangers. That was always difficult: waking up unsure of where I was, not comprehending what had happened and not being able to identify anyone who was near me when I first regained consciousness to the world.
This continued on for several years until I was twenty-seven. I had two daughters by then. The oldest was nearly two years old. My other daughter was four months old. One October morning I woke up and the seizures started. Against my wishes to ever be taken to a medical clinic and be faced with strangers after a seizure, my husband made the correct decisions and took me to a hospital. It was at this hospital I diagnosed with status epilepticus. My body started having seizures that morning and never fully recovered before the electrical storm would start again. My family’s decision to take me to the hospital saved my life. Seizures lasted all day. This day of status epilepticus forever changed my life. This day of status epiliticus wiped away nearly two years of memories.