My Own Brain is My Worst Nightmare
I’m in a meeting when I receive an untimely visitor. It creeps into my head with the unnerving familiarity of deja-vu, and along with, the panic. Worse than panic, really. As an eerie vaudevillian scene is projected somewhere deep inside my skull — the same one plays every time, but I can never remember it — my stomach tumbles to my feet, and I am awash with a sensation of impending doom; like the world is burning, every person I love will die, and darkness will cover everything that is light on this earth. I will have to watch it all in helpless horror, alone.
I think to myself, “This can’t be happening now.” If I don’t speak of it out loud, it will stop.
But it doesn’t. Now I am being pulled out of my body. I’ve been told that my eyes go blank when this happens. I know where I am and who is around me, and today, I am mortified to be looking at the faces of my CEO, and a promising donor prospect. While I sit in the same room with these two important people, I am floating in the fishbowl of my mind, a world away. The edges of my sight are fuzzy. On the back of my neck, there is a sharp, hot vibration. I never knew something could feel so loud. It is screeching.
The donor asks a question about our service delivery, and my CEO looks at me to answer. I usually address this topic well, but today it is impossible.
“Lauren, why don’t you take this one?”
I want to speak, but there is a troll lurking in my throat, snatching my words as they cross the bridge from my brain to my mouth. I attempt to swallow; picking up an elephant might be easier.
“Uh. Um…mmm…”
Gobbledygook. I see puzzled faces. One, the donor, looks impatient. “What’s going on? Is she okay?”
“Lauren. Lauren?”
I want to respond desperately. I can’t. I cannot talk.
This seems like it will last forever, but almost as soon as the unwelcome visitor arrived, it’s had enough of me. It slinks away, leaving pins and needles prickling from my head to my toes, and I am grateful for this discomfort. My insides are sloshing like the open sea. The vaudeville scene stops. I am weak as the fog in my mind lifts, and I have wholly anchored in my seat again. It is over. Tears sting my eyes, I take a deep breath.
“I…uh…just…” Words start to come off of my tongue like sludge. “I just…I think.”
I receive baffled looks. I can’t blame them.
“Uh…a seizure.” Another deep breath, I shake my head. “I need to call…I’m sorry. Um. I need to…call…call.”
I stare down at my hands for a few seconds, blinking. I just want to finish this sentence. “My…wife.”
Sweaty, pale, and embarrassed, I try to assuage the overwhelming concern of this prospective donor and my CEO. All it takes is the word “seizure,” to make them jump from their seats to call for help. I urge them not to worry. Finally, I can almost speak in full sentences. I am so exhausted.
“Thank…you.” This is like moving boulders. “I, mmm…don’t need an ambulance. It’s not an emergency.”
I can tell they don’t believe me.
“I have…epilepsy. I just need to call my wife. Um…I will step outside…please uh…feel free to finish up here, and I will wait in the hall.” I look up at the donor and force a smile.
“Thank you for your time. It was lovely…” I lose focus for a moment. My head hurts.
“To meet…To meet you.”
What I did not say is that if I do not get out of this conference room immediately I will vomit all over the marketing packet I carefully arranged in preparation for this visit. With legs shaking, I make my way out the door, sit down in the hall as soon as I am out of view – on the floor – I put my face in my hands – and let out a sob. I’ve had this monster under control for years, and in the most humiliating way I can imagine, it is clear I have lost the reins, again.
This is my worst nightmare.
It hasn’t actually happened, though. I was diagnosed with epilepsy seven years ago. I’ve been seizure free for five, but I will never forget what my seizures feel like. Seizures are a sudden surge of abnormal electrical activity in the brain. There are different types, and the symptoms vary depending on how and where they originate in the brain. I didn’t realize I was experiencing seizures until I had a grand mal, similar to what you might see on TV and in movies. Media generally does a terrible job of depicting seizures and what to do if somebody is having one (see first aid here).
I never had any health issues before, not even a broken bone. When I was diagnosed, I was told what I was experiencing, but we still don’t know the cause – this is common, about six in ten people with epilepsy are in the same boat. I went through an EEG, MRI, multiple visits with a Neurologist. I was asked endless questions and received few answers, though I was given lots of orders – no alcohol, get 8-10 hours of sleep, minimize stress, track my menstrual cycle, be alert to any symptoms – I was 21 and in college when this happened. It was like my body was out of my control, and I was in way over my head (lol! No pun intended).
Until my seizures were stabilized, there were days I couldn’t go to work or class because they would happen on and off for hours, leaving me dazed and locked to the couch, feeling like a truck had driven over me back and forth all day. It was hard to eat because I would get so nauseous, and I didn’t want to cook because I was nervous I might drop a hot pan or forget to turn a burner off.
My license was suspended twice, for six months each time – once because AZ law requires a medical authorization, and my doctor wouldn’t sign off until we were sure I could safely pull over if I felt a seizure – and the second time because a medication combo we were trying stopped working.
Treatment was throwing well-researched spaghetti at the wall and seeing what stuck. Until we got it right, I needed help – with rides, meals, chores, getting shifts covered, homework assignments extended, everything – and I hated it. This disruption in my independence splintered my self-worth. I defined my value by my productivity, which at that point in my life, was hindered.
The years since have been spent yoyo-ing with medication combinations, managing side effects, identifying my triggers, making lifestyle adjustments, etc. (PSA, get good sleep, it is so important!). As I have learned to live with my epilepsy, the most challenging part remains loving myself as a person with a chronic, invisible neurological disorder. I am most anxious about revealing my epilepsy at work – hence, my worst nightmare.
When choosing to talk about my epilepsy, I weigh my health and safety against my fear of vulnerability, and this fear is rooted in internalized ableism. Our society views bodies like mine as damaged or broken. I know this is wrong – I know the idea that people with disabilities need to be “fixed” is the seed from which discrimination grows. But ableism is pervasive, and we learn stereotypes and start making assumptions about people with disabilities from a young age – so my implicit biases linger. Sometimes after I tell people at work about my seizures I think, “Now they’re going to be nervous, I’m an unpredictable liability,” or “I should have kept my mouth shut because I just freaked everybody out and I probably won’t have a seizure anyway so what the hell was the point?!”
These thoughts are born of internalized ableism. To deconstruct this, I remind myself I’m being honest about who I am, and they hired me. I am dependable, strong, and whole. I love myself. My brain is an awesome gift.
I’m not always good at doing this, but I’m trying to be better.
Beyond my personal struggle, the reality is that our society at large devalues neurodivergent people – invisible disabilities and chronic disorders are invalidated. People with disabilities are treated as though our bodies present problems or inconveniences, and our policymakers, urban planners, corporate leaders, employers, etc. are rarely held accountable for reducing barriers. Recent examples of how this plays out are plastic straw bans, and the problematic dockless, electric scooters popping up across cities in the U.S. Specific to the workplace, even with the ADA in place, discrimination is ubiquitous. The consequences of ableism are reflected in alarming data from the Bureau of Labor Statistics, which reports that “the unemployment rate for persons with a disability was 6.3% in April 2019”, nearly twice the rate of those with no disability (3.2%).
Between my own implicit biases, and knowing the wider social consequences, it still takes me months to talk about my seizures with my colleagues, and what to do if I have one. About three million adults in the U.S. have epilepsy. When I eventually decide to share, I like to think I’m creating an opportunity for dialogue about this fairly common condition. This is almost always what pushes me to open up; and if my worst nightmare comes true, there is a bit of solace in having an office ally who can be there to support me, even if I have difficulty being there for myself.
My Own Brain is My Worst Nightmare
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