Invisible Seizures and Other Normal Twenty-Something Experiences

The feeling creeps in slowly, then all at once. I sit at a large conference table, surrounded by my classmates. Almost like a hallucination, I hear a line echo: “Okay, moving on…” Every professor will say this at some point, and unfortunately, it seems to be a seizure trigger for me. And just like that, I feel the sticky sensation of deja-vu. I stopped taking my seizure medications last year and was without much issue until now. Next come the chills, a weird cold sweat, and that disgusting metallic taste on my tongue. I take a deep breath, and as the air leaves my lips, I feel a gag bubbling up from my throat.

I have felt a lot of awful feelings, but none have ever been as horrible as an aura. Reading the description, it probably doesn’t sound so bad, but to feel it is a different thing. All these symptoms are physical, but it is the psychological that gets me. I don’t know how I think I know this, but in the moment, I am so certain that impending doom is upon us. Everything is over and I feel sick.

Tears well up and I want so badly to turn to my friend next to me, just so that someone is ready to bear witness if anything happens to me. But we are in a seminar, and I cannot speak.

You see, an aura is generally a precursor to a large, tonic-clonic seizure, the type most people associate with the word “seizure.” But an aura is actually a seizure as well, a simple partial or focal-aware seizure. This is caused by the start of seizure activity in a part of your brain that is then unable to spread outwards to your entire brain, so you do not lose consciousness, and you don’t begin to convulse. It is a seizure that happens while you are completely alert and awake the entire time. Someone right next to you could be having an aura and you would be none the wiser. A bit spooky, if you ask me.

My auras take place in the right temporal lobe, where non-verbal memory is stored. Thus, it is auditory and olfactory memories that trigger me. A pattern of words that if someone gets them right, will trigger this sensation in me. Unfortunately, my brain has chosen extremely common phrases to be triggered by.

I am normally fine. It is almost exclusively during periods of high stress or anxiety that I get auras. But every time it happens, I am brought back to three years ago, my neurosurgery. My neurosurgeon had explained to me that even though brain surgery will be a horrible experience and the recovery process even worse, it would all be worth it since I would most likely never have an aura again. You see, with full resection of a brain tumor, there is typically an 80% chance of never having an aura again. And so, I cried and screamed all those days in the ICU, clinging onto the promise that my future would be better.

But it wasn’t. Just my luck that I fell into the 20% of patients who have at least one seizure episode after surgery. At first, we thought it was just because surgery had messed with my brain and these episodes were just part of the healing process. And while I am only 3 years out from what can be a 5-year healing process, I can confidently say that I think this feeling will be with me forever. A lingering reminder of everything I have been through and almost a taunt, as if my resected tumor is whispering in my ear, “You will never get away from me.”

Today’s episode terrifies me. You see, this morning I had an aura within an hour of waking up, which almost convinced me to stay home from school. But I chose to push through instead, and there I was, paralyzed by equal parts fear and shock. I do not recall the last time I had two auras in the same day, but I know that this has not happened since high school (I’m doing a PhD now, so it’s evidently been a while). In other words, this has not happened since before I had my brain tumor removed. Is my tumor back? Has something else gone wrong? Was I wrong to have stopped taking my medication? I expect that these thoughts will continue to trouble me until my next MRI (fingers crossed) reveals that my tumor has not indeed made a comeback.

I recently moved to a new city, where the people I see every day do not know much about my past. I am no longer surrounded by the friends who visited me in the hospital. On the outside, I think I appear healthy; I am young, fit, and very active, always busy doing something. I go about my daily life perfectly fine most of the time, and you would never know by looking at me what I’ve been through, but I carry it within. Buried deep, only ever brought to the surface when that sense of deja-vu begins to creep in.