Night falls, in the stillness you lie in wait. Will it come tonight? Will it be bad? Will it leave me in pieces, or will it leave us in peace? Epilepsy was the thief of the night for many years of my life. I never knew when it would come. My seizures mainly struck when I was drifting off to sleep. It would fill my evenings with negative anticipation. It was always my Disease of Waiting.
It is a disease of waiting for that next unpredictable lightening strike, but it is also a medical condition that may be more painful for the observer than it is for the victim. Now, do not misunderstand me, I know that seizures can range from a mild case of moments lost to a life-threatening occurrence. I have suffered all levels. But I have also gained the knowledge of what a bystander will see as my mind slips into unconsciousness. I understand it is a blessing when our mind shuts off. Our body can thrash. We will wake confused with pulled muscles, a pounding headache and exhausted limbs. But understand that through the suffering –I bit hard into my tongue-, through the thrashing – I bruise, I may bleed- during the seizure event I do not feel the immediate pain. My body has been gifted with the ability to feel nothing at all.
I have watched my seizures though. After years of not understanding why I would wake so sore and confused, I finally saw a videotaped seizure event of myself. I know what you see. I have seen a severe tonic-clonic seizure from the eyes of an observer. I do understand the pain, hurt and suffering that the seizure can cause you. I understand the wild fear that fills your eyes with the morning light.
I cannot take this rightful fear away. I cannot offer you absolute calmness. It is my wish though that I give you this knowledge: When seizures held tight onto my body, I did not feel the pain and misery that you observed. You were the only one in the room with the ability to feel instant pain. I am sorry caretakers for what you have to see. I hope that by gaining this first-hand knowledge some of that fear, even if it is just a small amount, may be able to be released. Hold onto this realization, embrace it: Some nights will remain quiet with no electrical storm in the brain. Other nights, realize that this too shall pass; it always does.