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Weathering the Storm of Intracranial Hypertension

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There is an ocean in my head.

The average person may have a lake inside. I imagine it with some nice beachfront property. I’m not saying that lakes are without their own problems. The shore may erode, and the waters can get murky. Storms may even pass through with their ominous black clouds. If you’re unlucky, you might experience something really bad like a waterspout or a whirlpool, but you can weather these storms because you know that soon the bright sunny days will return and you can go back to relaxing on the beach.

There is no beach in my head, no matter how often I search for it. There is no horizon in all directions, there is no promise of land or hope for calm waters after the storm. Because I am lost at sea, adrift in my own head.

When I stand the waves crash against my skull, the pain brings me to my knees. The tide calls the waves back and forth in steady rhythm until the sound of their breaking drowns out all else and I am left with the beating pulse of the ocean thrumming eternally in my ears. The sea foam splashes in my face, my eyes play tricks on me. My stomach churns from the constant sea sickness.

My brain tries its best to navigate these torrential waters. When the pressure of the waves threatens to pull us down into a watery grave my brain casts unnecessary weight overboard. Usually it throws out barrels of memories without discretion. If I’m lucky after the storm has died down a little we can go back and still find some of these memories afloat, but some of them have sunk to the depths, never to be seen again.

Sometimes my brain grows weary with the constant fight. It stands pale and gray at the helm too exhausted to manage a single thought. Listlessly it steers us without any awareness of the dangers around us.

My brain cannot sleep, it must be vigilant at all times or else we might drown. As quickly as it pumps out water more leaks into the boat. If my brain were to rest we might get behind on bailing out the boat and might never wake again.

And this is just an average day with the sea in my head, but there is even more to contend with than waves and water. Storms, massive tempests, come with little warning. The sea turns violent and black, massive waves far larger than my brain’s tiny ship, roll from the deep, their frothy tips striking downwards like spears against my deck. The sky becomes so black I forget even what my usual gray skies look like, and I yearn for the fog that was plaguing me just moments ago. Lighting, white-hot, sears across my skull. It strikes through my eyes, it travels down my spine until every limb has burst into fire.

There is no room for thought. My brain is taken up with the sole action of navigating me through this storm. We ride the tsunamis, fear and weightlessness clenched in our gut, and only hope that we will live to see tomorrow. The only thought is survive or die. The wind whistles through my ears, drowning out my cries as I beg for mercy, my body crumples into a heap as another lightning strike drives me to the floor.

I once tried to ask an expert navigator for help weathering my storms. “The ocean’s been here for years.” I explain. “But the storms just keep getting worse, can you help me?”

What I got from the doctor was a drivel of excuse. “It’s all in your head. There’s no way there’s an ocean in there, everyone just has a lake, stop being so dramatic. The condition is benign isn’t it? Just lose a little weight and I’m sure all will be fine.”

All will be fine? There is an ocean in my head. Can’t you see the saltwater pouring from my eyes? Can’t you hear the waves and the wind through my ears? The weight was never the cause, it’s a symptom because while your brain is catching rays at the beach mine has been fighting these gales year after year untold. I don’t have energy to spare to fight other battles, I’m spending every day just trying to stay afloat.

The navigator snapped back at me. “What do you want me to do? Should I put a faucet in your head to drain this sea? Should I put a tap in your spine like a maple tree and see what comes out? Do you want pills to calm the waves but bring the fog? Do you want to lose the lightning but get more sea sickness? Tell me, do you want any of this?”

I grow silent. I don’t want this, trading a worst for a bad when all I beg for is just one good day. What I want to do is take two steps off of the plank and end the mad sea, but my crew keeps pulling me back from the edge. My crew anchors me; without their help on deck I wouldn’t be able to focus on fighting the rough seas before me.

I don’t know what tomorrow brings. I’ve given up hoping on tomorrows because the ocean in my head is relentless and can change without notice. I can’t plan for the future, tomorrow, next year or the years after. Too much could happen. I could get dashed against the hidden reefs at any moment. I could capsize and drown in the blink of the eye. The only thing I focus on is the squall that is around me right now, and hoping that at the rise of this next wave I might see even a glimpse of land.

So today, like all days before, I somehow pull myself up and make it out on deck. The sea sprays all around, filling my vision. We just dumped a load full of memories but I can’t go back now, this fog is too dense.

Again I place my hands upon the worn wheel of this ship tossed mercilessly about like Poseidon’s plaything. I grip the wheel tightly because even if the helm is not responding I must keep looking forward to the horizon. Because today, like all days, even if I cannot control the raging of this sea, I am still the captain of my own ship.

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Lead photo by Thinkstock Images

Originally published: January 21, 2017
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