Tag: Epilepsy

Breaking Up with My Heterotopias: Part One

~ Julie Southworth ~ 2 Comments

Over the past thirty-five years I’ve swallowed a lot of pills in hopes of shutting up my heterotopias, the blobs of neurons in my brain that stomp and scream until I have a seizure. I can name at least ten different prescriptions I’ve tried, and my partner remembers more. My epileptologist and I have settled on four that quiet my heterotopias the most, but those nasty blobs still break through.

Now I’m trying brain surgery to break up with my heterotopias. This was not an easy decision to make, by which I mean it took a shitload of work before my neurosurgeon would agree to sharpen his knives. I don’t remember how many times I’ve let EEG technicians strap electrodes to my head so that my epileptologist could watch those brats’ temper tantrums. Three times I’ve stuck my head into an MRI tube to help her find where those bad boys hide, and twice a neuropsychologist played children’s games with me to see what I could lose if those beasts won’t let go when my neurosurgeon tries to rip them out. Now I’m ready for brain surgery.

Well, sort of.

So far my doctors have only found one heterotopia. They’ve seen only one brat’s temper tantrum on an EEG and found only one of their hideouts on an MRI. However, I’m told that it’s highly unlikely, impossible even, that I have only one heterotopia. More testing needs to be done to find the other brats.

My epileptologist and neurosurgeon have recommended responsive neurostimulation to find the other heterotopias. To do this, my neurosurgeon would peel open my scalp and attach to my skull a responsive neurostimulator, a metallic, rectangular device a little over two inches long. Then he’d string wires from the neuostimulator to multiple points in my brain. Everytime a heterotopia screams and stomps, the wires would signal where the brat is, and, gotcha, it’s fucked.

Given that the neurosurgeon would have to split open my scalp, inserting a neurostimulator still constitutes brain surgery even if my brain remains whole. And because it’s brain surgery I want a second opinion. But I haven’t pursued one since before the pandemic began because my insurance wouldn’t cover it.

I’ve recently changed insurance, and my new one promises to cover second opinions. Even better, my epileptologist has referred me to a doctor for my second opinion who is covered by my new insurance. A second opinion moves me closer to responsive neurostimulation which moves me closer to, fingers crossed, finishing off my epilepsy. Jackpot.

But it’s been two weeks since my epileptologist made the referral, and I still haven’t called to schedule an appointment for the second opinion. I’ve been waiting for this opportunity for almost two years, but I keep postponing punching in the ten numbers on my phone that will bring it to me. Why? Why don’t I want to break up with my heterotopias?

I don’t have an answer. If I did, I probably would already have made the call. Over the next week, I’ll consider why and share my thoughts in my next post. Perhaps this process will lead to a phone call. Fingers crossed although, honestly, I’m not sure what for.

Why My Brain Asked Me to Blog It

~ Julie Southworth ~ 4 Comments

I’m a writer and a poet. My brain knows this. It wants me to tell its story, but not one about how it rules the body or how I’m more of a right-brain or left-brain kind of gal. Three frenemies run around my brain, and they’re tired of a one-person audience.

Epilepsy

One or more clusters of neurons in my brain, called heterotopias, jumped out of line in utero and, fifty years later, they can’t stop jumping. They’re tired. One of them wants a neurosurgeon to free it from its distress, and the rest, if they’ll ever remember to jump for an MRI, want to be lassoed by a responsive neurostimulator a neurosurgeon has promised to lodge under my scalp. But it’s August 2021, COVID-19’s still giving my heterotopias the finger, so they’re like, “WTF–let’s blog.”

Fibromyalgia

My brain has a lot of spunk. When the nerves in my skin send a thump, a tiny, little thump, to my brain, my brain hollers back–loudly. Its sounds reverberate through my legs, arms, and butt. My brain does this to make sure I know how much it cares. This poops it out, but no matter how tired, it still hollers. Now my brain wants to holler out to the blogosphere so it too knows how much it cares.

Depression

The neurotransmitters in my brain got an F in chemistry. Some are doing better since crash courses started popping up on YouTube, but most don’t give a shit about learning how to tango with dopamine, norepinephrine, or serotonin . My neurotransmitters care more about figures dancing or not dancing on their phone than in my grey matter. My brain hopes blogging will distract them from their mobile devices. Or make them an asset.

Me

I endure all of this with words. I prescribe them, and I monitor them. So when my frenemies insist on seeing their names first in the blog’s title, I don’t care. It’s my blog, and I like alliteration. “Julie Blogs Her Brain” it is.