To wind I awoke,
torrents of snow, ice bedroom,
then downstairs again.
Each night before I fall asleep I feel the same pangs of loneliness and discontent. I am completely alone with myself and by myself huddled in flannel and wool to keep me warm from the outer world. A protective shell. I fall back to my back during the day when I am most unsure of myself; it helps protect from the terrors of the outside world.
There is a terror inside that shows no mercy, that is not kept away by slumber, wool, or even hiding beneath the covers. When I seize, if available, I try and rush to my bed and wait until it is over. Sometimes it takes mere seconds. Sometimes it comes in clusters and will not stop its siege for over an hour. It is a siege because I am compromised and I cannot speak or write during this time; I have less than full control of certain parts of my body. I don’t fall on the floor and start shaking, but inside the terror is my reality as I attempt to fight off an unseen and invincible enemy that is part of my core.
I didn’t ask for it. I cannot even explain it fully to another person who does not suffer from epilepsy. The way it alters reality is powerful and dangerous. At one time I was able to drive a car and do everything that a person my age could do, but then a parasite came alive inside within my body. I consider epilepsy a parasite because not only is it misunderstood by the general public, but it is a life-changing condition that can strike at any second.
Now, because of epilepsy, I sacrificed much of my independence. I have a driver’s license but it is worthless for anything but for use as a picture ID. I can no longer engage in intense physical activity without the fear of seizing up; my love of hiking and my dreams of climbing some of the tallest mountains in the United States are no more because it is life-threatening for me to even hike something small. I cannot swim underwater without the fear of seizing, opening my mouth and drowning to death. My naturally fit and athletic body has begun to atrophy with disuse. No longer are my muscles what they used to be, and each day I can feel them growing weaker. I am only 20 years old.
It is not just the physical body that epilepsy can effect. The mental, emotional and spiritual parts of our human bodies are just as much affected. Because of seizures and all of the medications I am on, I am not as quick as I used to be. I have to take extra time on assignments in college. Many days I have cried because of the hopeless state I often find myself in. Why my case in particular was caused is still unknown. I have looked to different religions, many spiritual beliefs, and other mystic things in order to help explain what science can’t, and this is one of the few things epilepsy has caused me to be grateful for.
To anyone out there who knows someone with epilepsy, try and learn some more about it. There are procedures that attempt to correct the problems causing epilepsy. I am getting one of them in the near future. It can strike anyone at any time. I was a perfectly healthy 17-year old when, suddenly, I collapsed in my classroom. It affects approximately 1 in 100 people, and this doesn’t have to be through genetics. You could fall on the ice one day and start seizing the next. It’s likely you know at least several people who suffer from it, even if they are not vocal about it. If it had as much attention as cancer, we might be closer to finding a cure. Think about it.