My Rare Brain Disease and Me

“….we need to stay on top of this, if it worsens you can permanently lose your vision….”

His lips keep moving but all I hear is the light crackling above me and the steady beat of my pulse in my ear. Perhaps I nod, maybe even speak. Whatever happens it comes from autopilot because I sure as fuck left the building.

“Your total today is $79.82.”

Huh? 

What the fuck just happened? Did he say LOSE MY VISION?!?!

“Ma’am? Card or cash?”

I whip my head around fast enough to induce a headache. My eyes are blurry, why? I don’t remember… I try to focus them but can’t..

“Hun, right in front of you.” 

Oh, right, they dilated my eyes.

“Sorry, uh….. card? I um… I can’t see, but it’s the Hello Kitty card, is this it?”

“Here’s your card. So we need to see you again in 3 months to repeat these scans. And you need to follow up with your neurologist as soon as possible.” 

What the fuck. What the fuck. What the fuck. What the fuck. What the fuck. 

WHAT. 

THE.

FUCK.

Oh so this is happening now? Okay, well, fuck me.

Google becomes my friend and my worst enemy.

“Papellidema without IIH.” "Causes of ICP that isn't IIH."

“”IIH Treatment.” 

“IIH remission.”

“Alternative meds for IIH when sulfa allergy present.” 

“Spinal tap, blood patch, spinal leak, safe?”

“IIH shunt”

“Why do shunts fail and need adjustments?" "Is IIH shunt surgery truly only a 50% success rate?”

“What happens if you don’t get surgery for IIH?”

“Eye surgery for IIH”

“Therapeutic spinal taps.”

“Why is IIH treatment all over the place?”

“Neuro ophthalmologist”

“Social worker with a speciality in rare diseases”

TikTok testimonials become a steady hum of noise to break through the rapid fire googling. Some of the stories twang like an arrow of hope shot in the darkness, others a nightmare come to life.

My neurologist looks at me like she’s scared for me. She tried to hide it , but I saw it flash across her face.

“It’s mild” they keep saying, while in the same breath stressing the importance of immediate action. I don’t know if I should be relieved, or scared? Glad we caught it, but worried about its rapid progression. Mild? Mild has me laid up in bed 50% of the month. Has me struggling through work, and going through boxes of pills hoping for any kind of relief. Mild? What the fuck is severe? My death? It’s called pseudotumor cerebri because all the symptoms mimic a true brain tumor. “Just be thankful it’s not.” 

I mean, yeah sure. I am. But I’m still miserable.

It feels weird to complain. I’m not terminal. The percentage of remission is the same as the percentage for things to go wrong very very fast.

I’m allergic to the front line medications so now I have to take something that I’ve taken in the past (for another issue), but caused such a cognitive decline I couldn’t write or make art or string two sentences together for years. It’s my only medication option to help, if it does not work I will need brain surgery. And at some point, even if it does work, I may have to decide if my quality of life on the meds and losing cognition is better or worse than a brain surgery.

Even if remission is possible, it’s not permanent and can come back. The longevity of my life isn’t at stake but the quality is. Which duh, I’ve known. I was disabled at 15, I’ve dealt with medical gaslighting and an abundance of non concern. So it feels weird to have everyone stare at me with unending concern now. No one’s ever looked at me like that. It’s disembodying to hear a doctor say “I’m sorry” after giving you the news.

I’ve been through so much in my life, I can confidently say this will not be the thing that breaks me. I know if it came down to it, I’d choose whatever surgery gave me the best shot. I’d make the hard decisions without batting an eye. This being such a rare and individualized disease is what concerns me. The unknowing, the treatment possibilities no one seems to really agree on. The endless trials, no clear direction. No cut and clear incision and removal like my lipoma surgery. Just trial and error. Wait and find out. Seeing neurology and ophthalmology more than my own reflection. That’s scary. Being scared is the emotion I’m having a hard time sitting with. 

I don’t know what life looks like now.

Everything I was worried or stressed about seems so silly now. All there is, is this.

I may not know what’s in front of me. I know I’m in for a wild ride. But I am determined to make the most of what I can. Keep plans, keep dreaming, see what I can while I can. Keep loving those around me, and hope that I can dig up some courage I don’t even know I possess.