“Everything is worse at night. Everything.” Said my mother to me yesterday, after I had a particularly awful night, which led to an agonizing day. She is always right.
I can easily name the worst side effect of AE: sleep.
I haven’t met a lot of AE survivors like me. Okay, if we’re going to get technical, I’ve never personally met an AE survivor. Let that ruminate for a moment. The disease that ravaged my life, leaves me on my own, except virtually. And even with all the survivor stories I read, share, and hear, I don’t know of another onset that began with prolonged insomnia, like mine did.
Little to no sleep can make a good person go bad, and quickly. Insomnia leading up to psychosis, cognitive failure, and seizures, is really scary. A disease that messes up your sleep schedule in the active phase (months of sleepless days and nights), the recovery phase (because of steroids), and the afterlife (your fatigue drags you down daily, yet you struggle to sleep) is an awful disease. And that disease my friends, is my AE.
A protracted period of interrupted sleep and then tortured insomnia, left me with a permanent scar. The slightest jolt to stir me, the digital numbers on my alarm clock, the red light showing that the security system is armed and the house is quiet, nearly makes me panic. Just like Harry Potter feels the lightening bolt on his forehead, I sometimes feel the terror of night.
When it’s nighttime and you believe the whole world is asleep, except for you, you can conjure up some pretty scary thoughts as your mind runs wild. When my insomnia set in, my mind had these thoughts: You have to stop this, you have to sleep, if you don’t stop, you will lose everything. All of my greatest fears pulsed through my mind in the dark night and quiet morning hours. And then, many of them came true. Some fears unknown to me even came true.
Nights will probably never look the same to me. If my sleep is interrupted, it won’t just be “a bad night.” It will always mean something more to me. It’s like a fire that I need to immediately put out, before it tears through my mind destructing everything in its path. A long and bad night, sends me back to the date in March, 2018, where I can now point to my AE starting to take hold, and take over. A bad night means that I have to do some serious convincing of myself that I’m not going to relapse and I’m not going to die. Reassuring myself of those two things might sound dramatic to someone else, but it’s been a reality for me.
Autoimmune Encephalitis and all its devastation sucks. I don’t wish it on anyone. I surely didn’t wish it on me.
(Editor’s Note: I wrote this a while back, when I was really struggling. Usually, I spend a lot of time on my writing and even more time on my editing. I decided to leave this one in its more raw form. I spent that day seriously convinced I was relapsing, and the ragged emotion was almost more than I could bear. I think it fits in nicely with my mental health content as we move towards World Encephalitis Day on 2-22-21.)
(Amazing artwork by Robert Sheer, an AE survivor and warrior.)
“Hush, little baby, don’t say a word And never mind that noise you heard It’s just the beasts under your bed In your closet, in your head
“Exit light Enter night” ~ Enter Sandman by Metallica