I talk frequently about my experience with epilepsy and seizures – and I’ve come to realize that seizures act as energy conduits for me. I first met Michelle Pellizzon through her incredible project, oh holisticism. We had an immediate shorthand – in part because we both have this strange and magical “disease.” We asked each other questions about our experiences with/feelings about epilepsy. This is definitely one of the most specific and personal posts I’ve offered up on Plain Alchemy and I’m so excited that Michelle is part of it. Michelle noted that doctors cannot figure out the cause of her seizures. This has been my experience, as well. To provide some context, she wrote: "According to every test, scan, and exam, my brain is 'unremarkable.' That means that my doctors really can't explain why I have seizures—for all intents and purposes, my brain and body are healthy and normal. They could never figure out the root cause of my epilepsy."
This is the first small piece in an ongoing mission to open up the conversation around this and other ailments. I’m really hoping to expand the field of possibilities around ways we can relate to illness. I welcome comments, experiences, questions, suggestions, anything! Thank you for being here!
I completely black out when I’m having a seizure, either tonic-clonic (big, shaky, long episodes) or absence (a brief, sudden lapse in attention) type. It feels like I’ve fallen into the deepest sleep—like my body and total consciousness is enveloped in the deepest blackness.
When I was very young, I experienced frequent headaches and strange auras --- these felt like Alice in Wonderland experiences where objects or people would zoom in and out and get smaller and larger. I wasn't diagnosed until I was nineteen and had my first grand mal seizure, where I totally blacked out and turned blue, the whole thing. This was a super emotionally charged time in my life. I was a freshman in college and trying to figure myself out, like most people are at that age. I was drinking, smoking, partying, and not paying much attention to the state of my body-mind. Very shortly after this first tonic-clonic seizure, I began a very intense and toxic relationship. Searching, confusion, excitement, and chaos. I had a very strong sense for 6 months or even a year prior to the first big seizure that something terrible was going to happen -- as if my brain was preparing for something. I actually would say to people "I feel like my brain might die." I felt very shaky, airy, disembodied. My energy was concentrated in my head. And when I went to college (to Sarah Lawrence College outside of NYC) this only magnified. I was in the intellectual momentum. It was a steady building-up-of-energy that was probably happening my entire life -- but was quite concentrated during that yearlong period.
I attribute my seizures to a heightened sensitivity. I personally believe that they act as a warning system for me. When I need to pay extra attention to my actions, environment, and relationships, it seems that my seizures act as a very aggressive (borderline rude!) way of slapping me in the face to TAKE NOTICE. It’s like my body is shutting me down on purpose to keep me from making a stupid decision, or from staying in an unhealthy relationship.
It's like an extra antenna. My mindset around seizures and epilepsy is in constant flux. It still sometimes feels like a burden. I've had years of no seizures, and then a year of ten seizures. I've been through a few cycles like this. But I think what initially changed my energy around it was approaching it with curiosity and adventure instead of fear. There is still so much fear mongering around epilepsy that must have just clung to our collective unconscious since it was seen as possession by a spirit, witchery, insanity, etc. I started to learn a lot about the brain and to pay attention to my own mind and body a lot more. I also stopped defining "healing/healed" as "no more seizures." I realized that health, to me, means an understanding and a reverence for the magic of epilepsy and a deeper understanding of myself/the world. Concrete steps that led to the switch: Tweaking my diet, yoga, meditation, acupuncture, and learning how to channel and harness my energy. Basically, paying attention. This can be hard!
CONTROL, REBIRTH, AND WONDER
I remember when I was first diagnosed (I started having seizures kind of late, at age 17) I was terrified that my body was no longer my own. As a dancer, I’d always had hypercontrol and awareness of every inch of my body. I knew how to manipulate and control the tiniest muscles and tendons—I used to take pride in how precisely I could copy a hand gesture, or a slight head tilt.
But the looming threat of a seizure that could strike me down at any time, without my consent, was nothing short of terrifying. It was as if my body was rebelling against me, like an obedient child that had been overly disciplined its whole life and that suddenly lets loose and becomes a terror. It’s so funny now. My biggest fear wasn’t that I’d fall down a flight of stairs, or that I’d break a bone or my face mid-episode, or that I’d somehow suffocate and die in my sleep. It was that I’d have a seizure in front of a boy I liked and he’d see my underwear if my dress flew up above my head. TEENAGERS, MAN.
Last summer, I tried breathwork for the first time. It was transformative. Even though I’d never tried it before, it felt familiar. I realized it was because I had absolutely no control over my body as I got deeper into my session. My entire body stiffened, and even if I stopped my breathing pattern it remained tight. There was nothing I could do. I couldn’t even scream for help. It hit me like a ton of bricks—this is like having a seizure, but I’m awake. I’m conscious. I’m in this, and even though I have absolutely no control of my body, there’s nothing to be scared of.
It was a confronting experience, and frankly terrifying, but getting through it unleashed something in me. I really felt like the fear that still comes up around my epilepsy (although I’ve been seizure-free for 6 years thanks to a shit ton of holistic practices, I still worry that I’ll have a breakthrough episode and have to start all over) diminished.
I feel like the information I gather from my seizures is incredibly rich and difficult to synthesize into words. SO -- this is kind of like my life's mission/work. It's what I have attempted to do in my first two books and with Plain Alchemy and my art in general. Every time I wake up from a seizure, I feel totally terrified but completely renewed. Like, a reboot button has been hit on my brain. My body is exhausted but it's like a weird rebirth. I feel like I've come back from a journey and there's more out there. You know? There's more than we know. And language is a strange filter. I always come away with that feeling. (Which is scary for a writer!) This knowledge that there is a pulsing energy beneath the surface -- a really profound wildness and language filters it out. A simple way to say this would be: Energy is stronger than words. This is probably because when I wake up from a seizure -- I have no idea who I am, where I am, or what anyone is saying to me. I rarely know the answer to "What's your name?" Because that sentence means nothing to me. But the feeling of it is so profound, new, odd. As if I just landed on the planet. Total wonder.
I love my aura. I hear things. I always have, and thought it was normal. Before a seizure, I get a strange sensation in my inner ear. It sounds as if everyone in the room is whispering their thoughts to me directly in my ear, at the same time. If I get that feeling in both ears, I know I’m about to seize. But I often experience strange hearing sensations in one ear at a time, or a completely different type of sound (like buzzing, vibrating, or a high-pitched tone) in both ears. I know this might sound crazy, but usually it means that I have to pay attention to something. When I get my ‘hearing thing,’ I try to look around and see what’s happening that I must know about. If it’s not obvious, I’ll grab a pen and paper and start writing. Usually there is a message or a thought that just seems to come through on its own. It’s so weird! I’ve gotten into the habit of asking people exactly what they are thinking at the time that I get that hearing thing—usually, it’s something we need to talk about.
I used to not bring up my epilepsy because I didn’t want it to be the only part of me that people saw. It’s been over a decade since I was first diagnosed, and I’ve really just started publicly telling people about my story. My diagnosis was the only reason I found holistic and alternative healing, and why I read every book on neurology I can get my hands on. It’s also the big inspiration behind oh holisticism. When I started meditating, exploring holistic practices, and learning about nutrition in an attempt to get off my hardcore prescription anti-convulsant drugs, I found a lot more than better health. I became a more conscious person, and, I hope, a better human.
My auras are scary and enticing. They are usually visual -- quick camera flashes in my field of vision -- as if my surroundings are shaking for a second. And then a physical gesture with my arm. It actually feels as if I'm being moved by a remote control -- by something totally out of my power. I will get a specific tingling in the left side of my head that acts as a sort of warning -- even if I'm not about to have a seizure. I feel like my auras are always with me -- and this is maybe part of the superpower thing. I am always getting tingling or other sensations throughout my body and when I listen to them, I navigate the world with a lot more ease.