Jen Koch

Several years ago, I was hospitalized with a serious illness. At least, I guess you can call it an illness. The official term for it is “AVM,” short for “Arterioveneous Malformation,” which is (as explained by the neurosurgeon) a vein and artery that are directly connected, without a capillary between. It was in my brain, and it was leaking blood.

I call it the Head Crab.

While I likely had the Head Crab all of my life, red flags didn’t manifest until I hit puberty and developed migraines. I lived with those for a couple decades, managing triggers and managing pain, accepting them as a fact of life. They were almost a badge of honor. I had migraines that made me see rainbows of color and put me in so much pain that I vomited. I was a Headache Badass. If someone else showed up with migraines I felt like I’d found my tribe, and we’d swap stories and share coping advice.

And then, for whatever reason, the Head Crab reared its ugly head. An August far enough ago that the memory’s a little blurry. A gas station. A long, hot day of heavy manual labor and anticipation of a long road trip to Chicago that night. I filled up my gas tank, thought I was getting a migraine, paid for my gas and pulled into the parking spaces in front of the gas station to let the auras pass.

And woke up in an ambulance.

Over a week of tests and medications, terrifying CT and MRI results, and one six-hour surgery later, the Head Crab had been identified and successfully removed from my left occipital lobe with (we all hoped) no lasting complications.

And physically, no. There were no lasting complications. I healed, my softball-stitched head grew hair again, I weaned slowly off of steroids and seizure medications and pain medications, cleaned my apartment and catnapped because nightmares wouldn’t let me sleep. I answered interminable questions and felt like I’d traded my Headache Badass card for a better one: Brain Surgery Badass. That’s one hell of a trump card, and I play it with humor because the alternative is nothing I like looking too closely at.

But that’s the thing. Looking too closely is the problem; the one lasting complication that nobody really mentioned because nobody really thinks about the mental fallout of trauma until it’s happening. And who’s going to want to warn me about potential anxiety, not caused by medication or scar tissue but by the ugly, dawning truth that We’re All Going to Die Someday and suddenly my brain no longer has the blithe corollary to that statement: Yeah But Not Me?

Because we do. YOU do. We say things to ourselves like “well, you only live once,” and “I can sleep when I’m dead,” and “At least I’ll die happy.” If you’re like I used to be, it’s because there’s a buffer in your brain between acknowledging that death is coming for you eventually and really believing it. People around you die all the time, but somehow, by some miracle of brain chemistry, you still believe death won’t get you.

That buffer’s not there for me anymore.

It didn’t disappear because of the brain surgery. The surgeons looked at my healing brain scans and pronounced everything a success; I Would Be Fine. The buffer disappeared six months later, when a well-meaning neuralogist explained that my migraines were potentially seizures induced by the Head Crab, and that the scar tissue left from the surgery might mean future seizures. In doing so, they opened a can of anxiety that I’m still fighting.

I’m fighting fear. And what is fear, really? Awareness that you’ve lost – or are losing, or may someday lose – control? We speed through our lives assuming death’s going to flip through our good deeds, our frequent doctor’s visits, our 4-day-a-week gym schedule, our vegetarianism, our hard work, and say we get to dodge the scythe.

Get enough gold stars and live forever!

I did nothing to cause the Head Crab. I did nothing to create it, and while my activity that day may have exacerbated it, the Head Crab could have killed me in my sleep later that year if my circumstances hadn’t put me in a position to get help immediately. In fact, it could have killed me in traffic that night. Or at my desk over my lunch.

And now, as the neuralogist brought to my attention, I have scar tissue that may or may not result in seizures. Seizures that could manifest with any of a veritable Baskin Robbins 31 Flavors of symptoms, because ‘seizure’ is a general term that covers a vast amount of territory. Seizures that I can’t even prevent with a medication because the only proof a medication is working to prevent seizures is an absence of them.

So I have no control. That understanding rolled outward from there to include the rest of my body. I feel like I’m stuck in the watch tower at the top of a hill on fire. My internals are a dark zone – I don’t know what’s going on in there, anywhere. The only thing I do know, is there’s a Doomsday Clock ticking away.

This is why I’m awful at being sick. My brain flees like a terrified horse, right towards the worst possible scenario whenever I don’t feel well and can’t immediately identify the cause. Headaches are never just headaches – they could be a harbinger that my brain is bleeding. Visual snow – from being tired, from looking at bright lights, from the beautiful striations of tree shadows on the highway leave me struggling to reassure myself that I’m not about to see migraine auras. Being lightheaded for any reasons is clearly a sign that I’m bleeding internally somewhere from an asymptomatic cancer. Nausea is never just ‘a flu bug.’ Pain may be the result of exercise, but even if I justify the pain my anxiety is still muttering ‘yes, but–‘

Hi. I’m Jen, and I’m a hypochondriac.

These were things that I never thought twice about, before the Head Crab. Worse, if I don’t lock down the anxiety quickly it can MAKE its own symptoms like magic. I’ve managed to give myself frightening rounds of nausea. Tension headaches. Made my back or neck pain worse because of fear.

It’s ridiculous. It’s exhausting.

I’m managing.

Thankfully, when the anxiety was at its worst, an empathetic friend steered me to a very good cognitive behavioral therapist. I have a toolbox of things I use to keep the anxiety from overtaking my life, from breathing and meditation exercises to positive affirmations that remind me I’m safe. I’m using those now; making new affirmations and identifying the roots of my fears, in conjunction with making checkups to the doctor more routine and frequent.

To be brutally honest, I’d go back to that blissful ignorance in a heartbeat. I don’t begrudge humanity for tumbling through ninety-odd years believing this is a game they can win. But the reality is, aside from soap opera level selective amnesia, I can’t go back. I have a certain sharper awareness of death that I can’t put aside.

My affirmation to deal with this is “I’m alive. I’m breathing. I’m safe.”

I can’t look at death and say Yeah But Not Me anymore.

I CAN say Yeah But Not Yet.

Anxiety separates. It takes me out of the present, into a nebulous made-of-suffering future like a really pedestrian version of Days of Future Past. It isolates, and if I’ve learned anything about my particular brand of anxiety – isolation only makes it worse.

So by saying Yeah But Not Yet, maybe I can paddle back to the present. The present is where I’m breathing, where I’m alive, where my friends and family, my art and writing are.

I’ll let you know how it goes.