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.

Update: Where My Fibromyalgia Isn’t

~ Julie Southworth ~ Leave a comment

Oops.

Hours after I uploaded my last post, I saw my nurse practitioner (NP), the only medical appointment I’d had since the beginning of the pandemic (excluding vaccine shots), and learned that I’d lost, not gained, weight–twenty to thirty pounds.

Given this sizable amount, how could I have been so wrong?

It turns out there are quite a few answers:

  1.  I don’t let a scale into my house–nothing to motivate dieting and consequent self-loathing. Past increases and decreases in my weight have always been accidental. However, I’d never before assumed I’d gain weight when I’d actually lost it.
  2. My height shrank along with the pounds, so maybe my BMI remained the same. After calculating it, my NP declared me “overweight.” Before, when I weighed more and stood taller, I was “obese.” BMI is not the culprit.
  3. My NP told me that weight loss, especially when rapid, can lead to newly hollowed body parts sagging. And these days, more than just my belly sags.
  4. My NP also explained that menopause changes a woman’s body. Weight gain moves down to her belly. I’m menopausal, and my belly, when lined up with the rest of me, bulges and sags more than it once did.
  5. Finally, despite a minor in Women’s Studies and fifty-two years of resistance, I still internalize sexism and fat shame. How could I not in our society? Any change in my body, unless it tightens, feels ugly to me.

No doubt, a combination of these answers explains my mistake. Despite whichever may be the cause, these two things from my last post do not change:

  1. My belly sags farther down on my right hip than on my left, even folding over itself. I learned from my NP that I have “moderate scoliosis,” an abnormal curve in my spine that explains how gravity pulls my belly to the right.
  2. My belly defies fibromyalgia. When settled before the TV, my partner still slides his fingers across my belly and between its folds. No pain. None at all.

Given what this update does and doesn’t change, I’ll finish this post the same as the previous one: my belly equals freedom: freedom from pain, locus of love.

Where My Fibromyalgia Isn’t

~ Julie Southworth ~ Leave a comment

Fibromyalgia has turned my body into a battlefield. Taps poke. Caresses chafe. And it gets worse as the day progresses. The more I use my legs, feet, arms, and hands, the harder the poking and chafing. Once I make it home, I surrender my brain to the TV. Only its mind-numbing effect distances me from the pain.

My partner often joins me in my mind-numbing endeavor. He’ll sit to the left of me on the couch. After the TV has sufficiently dulled our minds, or at least mine, he’ll slip his hand under my shirt, dress, or sleepshirt. It doesn’t matter which as long as he makes it to my belly. There he’ll glide his fingers back and forth across my belly’s expanse. Back and forth as long as I’ll let him.

My belly has grown over the course of the pandemic, but it actually started to before. Two of my brain’s medications cause weight gain by keeping me from feeling full when eating. Also, I have been menopausal for at least two years and have, as a result, lost two and a half inches in height without losing any weight. Add to that the pandemic, which has eliminated my only form of exercise (walking to and from bus stops), and my belly now sags. It even folds over on itself at my right hip. When I shower, I have to lift it up in order to clean whatever is wedged underneath.

I can’t tolerate my partner’s belly exploring indefinitely. My need to hide its girth will eventually overtake his need to touch it. I’ll push his fingers away, gently. He’ll wait and advance his fingers across my belly, again. Then I’ll wait and force him to retreat, again. Over and over until I articulate my demand: no more belly.

A year ago, he went too far.

His fingers made it all the way across my tummy to my right hip. Once he arrived, he wedged them in between the two layers of belly rolled on top of one another. It didn’t feel gentle to me. It felt more like he’d crossed over a battle line and shoved in a flag.

“How can you do that?” I barked. “Do you want me to feel fat?”

He turned away, eyes down. “It’s the only place I can touch you that doesn’t hurt.”

Now I turned away, eyes also down. He was right. My fibromyalgia refuses to let him touch me most anywhere else for any duration. Too much pain. But my belly, my big, fat belly defies it. There my partner can touch me freely, easily, even absentmindedly. It stimulates no pain. Only my shame can stop him.

So I’m trying to surrender my belly to his fingers, to celebrate its fibromyalgia-lessness. I’m not always able to do so, but at least now I know what my belly is: freedom from pain, locus of love.

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.