themighty logo

What Epilepsy Taught Me About Coping With the COVID-19 Pandemic

Hands down, my least favorite feeling is uncertainty.

It is awful: having the rug of normalcy yanked out from beneath your feet, feeling like you are no longer in control of your own life, wondering how you’ll ever be able to do… well, anything. Ever again.

Especially when there’s no end in sight.

Right now, we’ve all been thrust into a period of uncertainty, and it’s scary.

Uncertainty has the power to hijack your brain and launch your thoughts into a zillion imaginary tragedies that play out in a constant loop in your mind. Often the things you imagine are irrational and worse than what the actual future holds, but uncertainty is a convincing playwright and the mind is a stage primed for action.

I know this all too well.

Epilepsy is a disorder of constant uncertainties, and it set off a montage of catastrophes inside my own head: What if I have another seizure? Another concussion? What if I never get my driver’s license back? What if I end up brain-damaged? What if these seizures never stop? These things could kill me. I might die. I.might.die. I. MIGHT. DIE. I.MIGHT.DIE.I.MIGHT.DIE.I.MIGHT.DIE.

On and on and on these thoughts ran, ad nauseam. It took me years to quiet them, but they still have moments of power over me.

However, upon observation, I see now that the most dangerous scenario that turned the hamster wheel of my mind was not the idea that I could die. No, the most dangerous thing I could imagine was this: What if there isn’t enough?

I had a medical cancelation on my driver’s license for four years (2012-2016), and scarcity was my constant companion during that time. My circumstances had changed, but my needs had not. We live five miles from the nearest store, so a car is necessary to run even the simplest of errands. I was stuck at home. I couldn’t go anywhere. I experienced scarcity in tangible ways: there was a very real possibility that I would run out of something I needed before I was able to get a ride to a store to buy more (e.g., toilet paper).

I responded in the only way that made sense at the time: I bought as much toilet paper as I could shove into the bathroom closet at one time, and that little stockpile of white rolls gave me a sense of security, and for a moment, I could breathe again. I felt like I had enough.

This security, however, was short-lived. As soon as a single roll of toilet paper was removed from the cellophane, the rest of the package no longer felt like enough. I started to worry: There isn’t enough anymore. When will I be able to buy more?

This same scenario played out for dozens of items (laundry detergent, noodles, tuna, shampoo, tea), and I was always afraid that there would not be enough of something. I fought tirelessly to outwit the demon of scarcity through overpreparation, by compulsively making schedules, writing lists, arranging rides, ordering in bulk online. But I was still plagued by another lack, one that I couldn’t buy in bulk at Sam’s Club or order online and have shipped to my door.

Loneliness, I learned, is a far more poisonous form of scarcity than a toilet paper shortage.

During my therapy appointment last week (which, thanks to COVID-19, was done via webcam), my therapist asked me how I’m handling this period of “social distancing.” It is a kind thing to wonder in this uncertain time, and I appreciate his concern, but I could only give a wry chuckle when he asked.

Social distancing is not new to me.

Since my epilepsy diagnosis, I have spent a lot of time by myself. I didn’t have a driver’s license for four years (2012 – 2016), and that period was the scariest, darkest time of my life. We had not yet adopted our daughter, and my husband is a farmer who’s often gone 12-16 hours a day, so I was entirely alone in our country house. During those long, quiet hours, I found some solace in books, but that’s not the same as human interaction. For most of those four years, nurturing true friendships was hard. I felt so other, so far away, so separate.

Loneliness slipped its own subversive slides into the catastrophe montage that already occupied my headspace. While I fought against physical scarcity in my external world, this invasion happened quietly, slide by irrational slide, and I was flayed daily by a whiplash of my own insecurity: Has everyone forgotten me? Why doesn’t anyone come to visit me? What if I’m not good enough? What if I’m not worth their time/effort/money/energy? Why didn’t they respond to my text message? My email? My phone call? Why am I so alone? Why am I so alone? Why.am.I.so.alone? WHY. AM. I. SO. ALONE?

The scarcity of loneliness feels a lot like suffocation, like not enough air, and even the smallest kindness can feel as refreshing as breath. Sometimes the only thing that snatched me from the brink of despair was a quick phone call from my mom during her drive home from work. Emoji-only text messages from friends were enough to bring me to tears.

Even though they couldn’t always physically be with me, it was so, so good to be remembered. Those who remembered me, who brought me back into the fold of togetherness, literally made it possible for me to survive, and I still count them among my truest friends. These 10-second tokens of compassion felt like enough.

I know what it means to have a health crisis force you to reevaluate every aspect of your life — your needs, your routines, your schedules, your shopping lists — and sort through them to decide what’s crucial and what isn’t, what must stay and what has to go.

Here’s what I learned: toilet paper is important, yes. But it is not as important as waiting for the “all clear” to rebuild your normal. I had to wait for a three-month seizure-free period before I could drive again. It took me four years. It was excruciating, yes. But I see now that it was necessary, because driving before that point could have literally killed someone. (My point: stay home, people!)

Toilet paper is important, yes. So is laundry detergent. And shampoo and noodles and tuna and tea.

But none of that stuff is as important as other people.

Now is a time of being together, but separate.

That is what did me the most good when I was so isolated: I was separate due to my circumstances, but when people reached out to include me from afar, I felt together. Reaching out can stave off loneliness, for giver and recipient alike. (I am still rendered giddy by the sight of a Hallmark card in my mailbox.) And thanks to the miracle of technology, it’s easier than ever to be emotionally close without being physically near.

This too shall pass.

We will all survive this season of uncertainty, together, but separate.

​I promise.

This story originally appeared on The Frustrated Epileptic.

Getty image by Anastasiia Yanishevska.