Yasa, Meet Epilepsy ... You Two Ought to Hate Each Other

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By
Yasa Pogarch
Partner of a Person with Epilepsy
Friday, July 23, 2021

I have always had the generalized idea of what epilepsy is just as anyone else would. Television series vividly showing people dramatically gasping for breath while foaming at the mouth, writhing around in hospital beds uncontrollably, all while the heart monitor they are hooked up to beeps rapidly in an arrhythmic tune of impending catastrophic doom. Loved ones looking on with a look of panic and helpless horror on their confusionstruck faces. The reality of meeting epilepsy face-to-face was not too far from the truth. I had witnessed partialfocal seizures while volunteering at a local hospital, but my first experience witnessing a grand-mal tonic-clonic seizure was unnerving, to say the least.

Months before, I had begun working for Yuri, an awkward shy man who happened to run a construction crew. I wanted to gain hands-on experience framing residential houses. It was such an ordinary day on the site. My co-workers were downstairs working on building the deck and I was on the second floor. I called out to Yuri asking what size the headers were on the blueprint after I heard him give the guys some direction. 

Our rock music was turned on to a loud, but tolerable volume. But I got no response from Yuri, even acknowledging that he had heard me. I walked halfway down the stairs, while the guys were dispersed zoning out on their own individual projects, joking aloud with each other. The strangest thing is that I know he heard me calling his name. I called out twice over the music, following a third time, with a slight hint of annoyance in my voice.

“Yur, you got the prints? How wide does he want the rough opening for his closet door?”

He turned around and looked at me in the blankest way possible when I called his name the first two times. Like someone who makes eye contact, hearing, but not really listening. Not really confused either. More like someone who is lost, but not very scared of being lost, if that makes any sense.

He turned back around facing the direction the guys were working. No big deal, except I was about to tell him he was being rude. I figured he had something else he was going to give the guys to do, or perhaps giving them something more important to do before we moved onto the next house. He proceeded to say nothing.

“Yur!” I called out again, louder this time and down a couple more steps, so he couldn’t possibility ignore me.

Another 180 turn, and blank stare, only to turn around again with no other vocal acknowledgement that I was speaking to him. That is when I knew something was up. We had only ever talked about it before, but as it was only in a past tense, there is nothing that could have possibly prepared me for what I realized I was just about to witness. I had an “ouh-oh” moment thinking, knowing, that something was about to hit the fan big time.

“Did he hear me?” I frantically called to my co-worker.

We made brief eye contact, but the poor fella merely shrugged his shoulders, and got back to whacking away at something with his hammer. He apparently was not observing our boss as closely as I was in that moment. I walked toward Yuri, and I guess my anxiety at that moment must have been airborne and contagious or something, because one by one, the guys followed, slowly forming a circle around Yuri like some dark cult while he was standing in front of a recently braced off wall. 

After what seemed like one of the longest minutes of my life, I watched my friend and boss quickly bow forward in an awkward, sideways jerking fashion between two studs. The way his back contracted sideways made it look like he was trying to wedge himself between two studs with the path of most resistance. It looked as though every single muscle in his body had gone completely stiff, rudely ignoring the misfiring neurons that kept screaming signals for his muscles to remain calm. Like futilely trying to soothe a toddler you had just said “no” to. His jerking movements became more rapid and random, as every muscle in his body began to contract simultaneously.

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We slowly lowered him to the floor, while mentally attempting to consistently remind our own brains about what we were witnessing for the sole sake of sanity. The seizures I had only ever heard him talk about as though it was a thing of his distant past, were now back and unfolding in a truly horrifying way. He hopelessly gasped for breath, over and over. His body was involuntarily convulsing more quickly now, as quickly as the individual muscles could manage. His eyes, wide open in panic and fear, completely unresponsive, as though visually seeing demons that the rest of us did not. His jaws were clenched together tightly, in a universal expression of debilitating kind of pain.

We began to see blood, slowly accumulating from the side of his tongue he was biting, and spill over into the saliva already heavily drooling from his mouth, all the while still gasping for breath frantically, as though he were violently choking on popcorn, only the air had disappeared from his lungs, and all he could manage was to move his mouth like a goldfish, eyes still popped out and body flopping around. The sounds he made were grunts, like someone’s body who fell flat on their back, knocking the wind out of them, repeatedly. Thankfully, one of us had the temporary soundness of mind to remove his tool belt, filled with nails, several freshly bladed knives, and a 20-ounce hammer.

“There ya go, buddy, that should help you not kill yourself for now.” I heard my co-worker CJ exasperatedly sigh something like “here we go again.”

Yuri has been living with epilepsy for 15 years which is a result of a traumatic head injury following a car accident in his early 20s. As I began to date this man who also happened to be my best friend, my curiosity about the mysteries behind the human brain grew deeper. Yet, everything I searched for — whether it was comparing the side effects behind the common prescriptions or the effect that living with epilepsy has on relationships — was discouraging, to say the least.

The endless stories I keep reading about partners with epilepsy is no less unnerving. Most of the posts I read are written by people living with partners who have epilepsy and experience between one and three episodes a year. I have known Yuri for just over a year, and he just had his 12th seizure. Yes, in the last 365 days! Not complex partial seizures, but I am talking full-on grand mal, turning blue-in-the-face, tongue-biting, crazy-eyed, nightmare-inducing seizures.

I am not easily scared. But this new enemy of mine — this “condition” I am forced to wait for in my life — petrifies me. These seizures, the things that Yuri calls “side effects” are the stuff of nightmares. Yuri basically gets to check out of life during these episodes, and wake up feeling dazed, with no memory of what happened other than he got a quick head rush and fell asleep. Meanwhile, I am witnessing things that are unspeakably brutal on the human body. I am waiting and praying for him to wake up, just so he can go back to sleep and take a nap after all the seizures. 

It is not his epilepsy. It is our epilepsy. It is a show run by us.

This thing is no longer just his condition, but our condition. It is not his epilepsy. It is our epilepsy. It is a show run by us. Only, I do not really run the show. I am like the quiet, seemingly insignificant coffee assistant who lives for the production, but takes no part in writing it. I just get to wait to be cued in and witness it unfold over time, dealing with the consequences.

Sometimes it feels as if I am alone. There is so much put on your shoulders because you feel like you always have to be the strong one. You have to be the one to drag your loved one out of the muddy darkness. You will feel like your needs are not being met because how are you supposed to allow weakness into your life when you are the strong one?

If you are a caregiver and feel a fraction of what I feel every day, get advice, support, and guidance. Lord knows, I can use all the help I can get.

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Reviewed by: 
Jackie Aker

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