You are not alone. You may be the caretaker, a mother or father, husband or wife. Maybe you are a person who has had epilepsy for years. Possibly you are reading this seeking information because of a recent partial complex seizure the doctor said you had. Whoever you are: You are not alone. Seizures moved you in some way. Seizures move us all. Whether it is the emotional stress creating tears that slide down your face or the physical pain causing you to wake with sore muscles strained from uncontrolled contractions, seizure continue to move us.
Seizures move me. They really do. Seizures move me mentally. They move me emotionally. Physically, seizures truly move me. I started having “staring spells” when I was in eighth grade. The first tonic-clonic struck when I was in eleventh grade. At that time, I still did not fully understand what was going on. Ignorance was bliss for me. Seizures merely annoyed me. Eventually they made me angry. I was frustrated that they came and stole my nighttime hours. I was scared. I did not know when the next moments of confusion would come. Because of this ongoing dread, I labeled epilepsy my “Disease of Waiting”.
I remember the first time I saw myself in a seizure. I had one taped, so I could see what caused me to wake feeling like I had run thirty miles throughout the night. Watching the video I was awed. I hurt mentally. Suddenly I had sympathy filled with pain for what my family had to observe over the years. You see, tonic-clonic seizures do not physically cause immediate pain to the person seizing. I was always aware of the aura. I knew when I was going to slip into a grand mal seizure where I would shake and twist my body uncontrollably. I woke with tiny red spots around my eyes from ruptured capillaries because of choking that occurred as I seized. I would be confused and concerned when I woke up. Yet, I had no memory of the pain that others assumed I was feeling. This is one comfort I would like to offer the caregivers of epileptics: The person that is lying there experiencing uncontrolled movements, gurgling and making mysterious moaning noises is not in discomfort or pain. During this phase, they cannot feel what is happening. The mind has given us a gift of making individuals unaware of anything they may feel during tonic-clonic seizures.
Please, always remember seizures can do permanent harm and must be taken seriously. In the past, I was neither concerned nor worried about what seizures did to me. I was frustrated at how they interrupted my waking hours by disrupting my nights. I did not understand how dangerous they could be until I went into status. I was lucky my family was around to insist I receive medical attention. I woke after no less than seven consecutive tonic-clonic seizures to find part of my memory erased. Whether you are new to epilepsy or are familiar with your usual seizure pattern, if the seizure seems abnormal or lasts an extended time, seek medical attention immediately.
Seizures move everyone they touch. It is a Disease of Waiting. We never know when the next one will move us. Hopefully never. Usually they will be back at some point sneaking into our waking hours or stealing us from peaceful dreams. Please know though that when you do wake, as you process the pain and sadness, concern or misery, you are not alone. Many others out there feel the same way you do. Many people are moved by seizures.