©Hanna Mandelbaum

Seizure and Search

An Epilepsy Story: Part 1

It’s August 6th. We’re getting ready to leave for Fire Island. I’m in the kitchen, bickering with my boyfriend Noah about whether it’s really necessary to bring the large blue cooler because do we really want to schlep it around? Besides, we have the insulated tote, and that should be big enough…

Nothing descends.

My perspective has shifted. I’m looking up at Noah. “You’ve just had a grand mal seizure,” he tells me. “The EMTs are going to take you to Maimonides, and I’ll be down there soon.” I realize I’m sprawled out on the floor, two paramedics are standing over me (one is quite attractive), and there’s an IV line sticking into my arm. I later learn that I bitterly protested the needle with a chorus of “No’s” and tearing the tourniquet before slipping into unconsciousness long enough to allow it.

My limp body is lifted into a wheelchair. I’m floating down the hallway towards the elevator, realizing that I don’t have the energy to be afraid. I flicker in and out of awareness through the triage process. This is a good thing. A more accurate perception of time passing in a hospital would have driven me nuts. And it’s so cold. Why are emergency rooms always freezing? Only after hours elapse does my consciousness began to crystalize, with Noah once again leaning over me. He looks at me in a way that nonverbally communicates love and reassurance that somehow things are okay. I bask in the sentimentality of the moment until a wave of nausea breaks through me.

An IV full of medication later, and the discharge papers arrive at my bedside. A doctor informs me that as a “first seizure,” this may be an isolated event, but that follow-up with a neurologist is essential. At this point my odds of experiencing another one are approximately 30%. Also, New York State law prohibits me from driving for a year — they actually tell me a month in the ER, but my horrified neurologist will provide the correct time-frame. Noah takes me home. We order pizza. I call the people I need to call — including my business partner who informs me that this is our company’s best sales day ever — and then sleep for a very long time.

The course of my long recovery is a preview of dementia or my regular ADHD on crack. My short term memory is in shambles. I find myself in the middle of mundane tasks and forgetting what I am attempting to accomplish — like walking into the bathroom to brush my teeth, becoming aware that I am in the bathroom as if I had just awoken to find myself there and not knowing why had entered the room in the first place, because I don’t have to pee. Conversations are circular. I repeat myself and ask the same questions like my 95-year-old grandmother. Unlike Grandma Ray, however, I am aware of how cognitively compromised I am. My internal thought processes feel lucid, but things fall apart when I try to engage with reality in a practical way.

The next few weeks are a flurry of doctors visits and diagnostics, including what feel like several unnecessary primary care visits to get referrals for neurology and imaging tests. This will be followed by a pre-planned trip to California to visit my brother, Max, who is also conveniently a neurologist. During this time, I hear the same refrain from friends and acquaintances, “I hope they figure out why this happened.” My response is always, “I don’t.” From a diagnostic standpoint, anything that could be found at this point that could definitively explain the seizure would be worse than an idiopathic event: brain tumor, aneurysm, abnormal neuroanatomy, encephalitis, brain damage. Given this, I’m just fine not knowing. Whenever I try to relay my attitude and the logic behind it, I’m met with mostly blank stares or a stammering, “well, I hope you get answers.” Humans have a hard time letting things be unexplainable. I try to clarify that I’m sure not finding a cause doesn’t mean that something is intrinsically unknowable, just that it’s beyond our current scientific understanding — and while we’re at it, don’t we have ridiculously high expectations from medicine, considering how recently in human history a shocking number of maladies were treated with mercury, cocaine or blood letting?

It’s not until the eve of my MRI that I start to experience the panic of “what if.” As far as I’m concerned, until there’s an image, nothing is determined. I have Schrodinger’s brain. The thought of having to lay perfectly still in a tube for 45 minutes and having to deal with yet another injection is also terrifying. Waiting a week plus for the radiology results would be psychological torture. Max instructs me to get a disc at the imaging lab so he can read my results right away. Putting my own anxiety ahead of the ethically murky notion that my brother might be put in the position of finding something awful and having to inform me, I agree to do so.

Before my MRI, I have to sign multiple forms, including one that indicates that there’s an infinitesimal chance that the contrast dye could kill me. The test itself is not as bad as I thought it would be. While encased in the clicking tube, I find a newfound appreciation for Kubrick’s 2001, A Space Odyssey. The contrast dye makes my arm feel cold and there’s a metallic taste in my mouth, but it does not kill me. By this point, my since-childhood fear of needles is pretty much gone. As I am on the way out the door, a technician hands me a CD with my image files and the software to view them. Within 24 hours, Max calls to tell me that my MRI indicates no abnormalities. He cannot resist mentioning my brain being slightly asymmetrical but within a normal range. “So are my boobs.” “Gross, TMI.” Relief washes over me — no tumor, no aneurysm, no abnormal neuroanatomy, no encephalitis, no brain damage. All of my worst fears dissipate. Most of these fears predate the seizure, because who isn’t terrified of aneurysms and brain tumors? It will take approximately a week for the official radiology report to arrive, confirming Max’s initial read.

Next I have my first official visit with my neurologist. I had found Dr. H on ZocDoc and chose her based on her great reviews, her board certification in epilepsy, and her weekly clinic hours at an office that takes my low-income insurance. She strikes me as empathetic. We go over my history. Any head trauma? I recount the time two-and-a-half years prior when I took a tumble off a trapeze onto a crash mat. No concussion, it was mostly my neck muscles that suffered. A few years prior to that, I had been in a car accident that resulted in whiplash. She seems to think neither of these events rises to the level of seizure inducing. I mention my recent bout with shingles, which is of interest, but there is no known link with seizures, other than had the virus gotten into my brain, in which case I would have been in much worse shape. More than half the time, she tells me, the cause of seizures is never identified — I sense that I am with the majority here.

Perceiving a level of anxiety that I wasn’t even fully aware of, Dr. H seems most concerned about my psychological well-being. “Uncontrolled loss of consciousness can be extremely traumatic,” she says, going on to describe a study that found wounded veterans who lost consciousness during their deployments are far more likely to experience PTSD. She emphasizes that it is important that I process my feelings around my seizure. It dawns on me that I am afraid. I am afraid to take a shower or bath alone at home. I am afraid of having another seizure in public, or at all. I am afraid to engage in activities that I love, like riding my bike and aerial acrobatics. I am afraid I won’t feel like a normal version of myself again. I am definitely afraid to stand at the edge of the subway platform and impatiently peer down the tracks — which I should have been afraid of to begin with, since like most New Yorkers, I am convinced there is a very real danger of getting pushed onto the tracks.

After going over questions regarding the safety of my few “vices,” I leave the appointment with a prescription for an anti-epileptic drug (AED) called Keppra. Dr. H presents the drug as an option but does not indicate that it is necessary at this time. My plan is to fill it to have on hand but not take any unless I have another seizure. In the meantime, I will consume lots of CBD, meditate, eat well, and try to regain a sense of normalcy.

Neuro-glam Selfie

The next test is an EEG. This is performed at the medical center where I see my neurologist. Generally for adult onset seizures, when an MRI is normal, EEG’s don’t reveal too much. My main concern is whether the glue that attaches the rainbow-wired electrodes to my scalp will ruin my hair. The friendly tech assures me that this is everyone’s first question and that it will come off easily. We chat about biking and music, which I’m allowed to select for the duration of the 45-minute procedure. Feeling nostalgic, I choose “Big Calm” by Morcheeba. In retrospect, Radiohead would have been more fitting for the scenario. I take an obligatory selfie, which apparently everyone also does. For the beginning of the test, I am instructed to hyperventilate in order to elevate my pulse. For the rest of the time though, I am to remain relatively still and silent. I drift off and enjoy a short nap.

A few days later, Noah and I depart for California. I am still exhausted, anxious, and teetering on the edge of functional. Max lives in Redding, which is smoldering in the wake of the Carr fire. Our plan is to stay with him and my niece and nephew over Labor Day weekend, but first we will spend a few days in Mendocino to recharge. We stay at an eco-spa, populated by aging hippies who take full advantage of the clothing optional policy. The novel environment, fresh air, and rugged landscape at the edge of the continent jumpstart my brain. I decide that I do not believe that everything happens for a reason set out by a god or “the universe.” I do believe that storytelling is essential to untangling the messy threads of reality and that authoring my personal narrative will help me make the best of my situation, whatever it turns out to be. In this plot development of my life story, the coincidence of my company’s best sales day with the seizure takes on new meaning. Clearly I had not been prepared for success, and my brain needed to install a new operating system and reboot. Welcome to Hanna 2.0. It’s just taking a while to restart all of the programs I had running, as well as load the way-too-many browser tabs that were open. This is my story, and I’m sticking with it; repeating it to myself like a mantra.

The rest of the trip goes smoothly, and by the time I return to Brooklyn, I’m feeling much better. My EEG results come back normal. I plan way ahead for my birthday on February, 6th, which will mark the six-month anniversary of my seizure (another coincidence that is fodder for imbuing meaning). At six months seizure-free, the odds of my experiencing another one will drop dramatically. Trying to slow down in my day-to-day life, I even manage to meditate with some regularity. I take long walks in Prospect Park with my dog as often as possible. Usually I do this alone, but on September 29th, I have company. My good friend Anastasia is watching her mother’s Chow Chow, which is an excellent excuse to meander through the network of trails and paths in Prospect Park; two women and two dogs. It’s a beautiful day, and we cover a lot of ground. As dusk settles and we exit the park together, Anastasia offers a ride home, which I accept.

I’m in the back seat sandwiched between two large fluffy dogs. It has been a perfect afternoon, and I am happy. In an instant something shifts. I feel my consciousness disassociating, and the world feels distant. I perceive a high-pitched sound like an eerie violin scoring a vintage horror film. Terror overcomes me, and everything in my field of vision takes on a shaky quality.

Nothing descends…

Continued in Earthquake for One: An Epilepsy Story, Part 2

Hanna Jane Mandelbaum

Written by

Accidental dog food entrepreneur (co-founder Evermore Pet Food), artist and circus enthusiast living a physical comedy of errors. https://hannamandelbaum.com

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