What Life with Psychogenic Nonepileptic Seizures is Like
“You don’t have real seizures. Nobody in the neurology arena can help you. You have a mental health condition, not a real one.”
My life was rocked in 2013 with those exact words. I had just spent three days in the hospital, where my seizures were being monitored by video and by brain wave when they sent in a social worker to give me the news.
I didn’t even deserve a doctor to give me this life-changing news. I got a social worker instead. That’s how little my neurologist thought of my diagnosis.
I knew nothing about the diagnosis the social worker eventually got around to sharing with me after destroying my humanity, psychogenic nonepileptic seizures or PNES. I have learned much since then, through hard work and research done almost entirely on my own.
PNES is a response to trauma, where the body needs to find an escape from the present day and mimics a seizure in order to do so. I have learned mindfulness techniques that (sometimes) limit my seizures.
I have come to grips with much of my traumatic past and have learned to view the physical and psychological abuses I endured as a child in a much more disinterested way, which allows me to respond to triggers in a healthier way, when I recognize the triggers.
Unfortunately, there’s not always a trigger for me, so this good and hard work has only been minimally successful.
More than learning about PNES, I have learned about myself. I learned I am stronger than I thought. In 2013, I wouldn’t have imagined I could learn to accept the fact that I am essentially unemployable.
I never would have thought I could set aside my identity as the main breadwinner for my family, lean into trying to build my own business, and largely fail, but still feel self-worth.
Every time I come out of a seizure, someone in my family says, “Welcome back Chris”. It’s our little code for letting me know that I’ve lost moments in my life.
As I try to reorient myself to the present, I find out how long my seizure was and come to grips with my own body again. I often fall when I have one of these seizures, so I have to do an assessment of my body for injuries.
I never thought I could handle this daily stress, but I do, and it’s a part of my normal now.
When I say daily, I’m not exaggerating either. Most days, I have at least one seizure. Some days, I have a dozen.
The frustrating part is that I’ve yet to figure out what the primary triggers are for my seizures, so it seems to be random whether I have any on a given day or not. This is traumatic in itself, because I feel so out of control over my own body.
So, I lean daily into mindfulness techniques just to keep my head on straight, because otherwise I would sink into depression. Or worse, stay angry all the time.
I’ve done both in the past; neither helps anyone, least of all me. Instead, I choose to stay present with every moment that I can and hope for the best. That’s all I can do right now.
Some days are harder to maintain this positive attitude than others. The days where I fall down the stairs three times before lunch, for example, make it impossible to stay in a good place, it seems.
So there are days where I am a royal grouch because I just can’t deal. There are other days where my head hurts so much or I’m so dizzy from hitting my head so many times that I don’t leave my bed. This is all part of my normal.
I wish I could say that this was going to come to an end at some point in the future, but the truth is I don’t know if it will. This could be my life from now on. I have to deal with that potential reality because there is so little out there to help with PNES.
And what there is, I’ve tried without much success. So I soldier on, picking up little bits of help from the different corners of the world that are focused on PNES, and hope for the best.
But it’s not all bad news either. I have learned what it means to live in humility. There’s nothing like falling on my face without warning to produce humility, right?
All joking aside, this humility that’s nearly been forced on me has had some tremendous results. I am a much more empathetic person than I was in 2013 when I started on this journey. I know how to listen better to those who are hurting, because it’s a daily part of my journey.
Surprisingly, I am a more optimistic person overall because of this disability. I think it’s a function of my learning to cherish moments more. When I can have a 15-minute conversation with my teenage son about his life, I am grateful for the chance to connect, whereas I might have been quick to belittle this small moment in the past.
Now I understand that every minute that I’m present in is a chance to celebrate something. I’m not perfect at celebrating by a long shot, but everyone who knows me well has seen the difference, and they’ve commented on it.
Who would have thought that losing moments would make me a more positive person? The surprises never end in this life. I’m glad to be present for the moments that I am, and I’m learning to stay in a place of gratitude toward them, regardless of how many times I hear, “Welcome back Chris.”