Pain has a way of separating you from reality, but it also has a way of keeping you grounded. It’s a strange balance I’ve noticed over the years, since I’ve had trigeminal neuralgia for over twenty of my near-thirty years on Earth. This February, I will be turning thirty, and I will be no closer to finding relief for this disorder than I was ten, fifteen years ago.
Strangely, my best memories of childhood took place when I was most ill: because when I was sick with this unusual pain I couldn’t identify, this pain I called “headaches” which made my stomach roil, I stayed home from school and read non-fiction all day. I read about the pyramids in Egypt and the mysteries of metaphysics. I probably learned more while lying in bed, reading, than I did when I was in school.
Over the years, I’ve noticed I have the ability to slip out of my body. Out of this vehicle that carries my soul. Since my brother committed suicide in August, I have noticed his presence, and recalled his response when he discovered that trigeminal neuralgia had been nicknamed “the suicide disease.” Now, looking back, this seems like a strange irony.
He’d said, “I’d better keep an eye on her.”
Instead, it was Miles who left Earth prematurely, not me. Yesterday, after a severe Level 20 attack, I slipped into an unconscious state and left my body, drifting into the In Between, the place I’ve always visited since I was little. The place where the dead go and wait for their loved ones. The place that exists between this world and other worlds.
Miles was there. We walked together in the white space that is nothing and everything. He put his arm around me, probably told me everything would be okay, though I can’t remember his exact words. I have been told he is watching over me.
Then, I felt myself fall back into my body– hard –the way they say it happens when you have an out-of-body experience. Back in my bed, I thought of him, my little brother, and I felt him near.
Pain has a way of separating you from this world, of opening that window into the next. I travel between them seamlessly, driven by the desperation to find a cure for this pain, to escape this beast that stalks me, this beast that stabs a knife into my face when I least expect it.
Twenty-plus years of this. I keep fighting, and praying for a way out of this agony. In the meantime, Miles watches over me, his hand on my shoulder. I am grounded, yet I walk between this world and the next, seeking a cure. Seeking the end of pain.
Visit TNnMe: Intl Trigeminal Neuralgia and Me website. Also feel free to explore my website. I regularly write about trigeminal neuralgia in the hopes of raising awareness for this disorder. If everyone does their part, we will find a cure one day!