Playing with PNES

By Ocean Hayward

Anxiety. ADHD. PNES. Okay, you’re probably all well versed on the first two, but the last acronym is probably not as familiar. About a year and a half ago, I was officially diagnosed with Psychogenic Non-Epileptic Seizures (PNES). I always like to joke that, yes, it is an acronym that if stated phonetically would sound an awful lot like penis. Pee-Nes. Just my luck. I don’t typically share my PNES with most people. I used to because the seizures were so frequent that I was afraid I’d have one in front of people. I’d rather them know up front why I’m shaking and trembling like a person during DTs so I don’t alarm anyone.

I started having seizures about 8 years ago. They aren’t fall down, unconscious on the floor-type seizures. They are tremors, twitches and jerking motions that I have no control over. They can last for a few seconds, to a few minutes, to a few hours. It all depends where my state/ level of anxiety is. During the attacks, my blood pressure elevates as well. My seizures are my body’s way of dealing with extremely high stress situations. I’m not sure why it reacts with seizures. Maybe it’s because I tend to be a quiet person, especially when it comes to how I feel. I try to avoid conflict as much as possible and when faced with the anxiety of having to confront someone, that tends to set off the seizures quite a bit.

Certain situations are much more stressful than others. A big one for me is crowds. I hate crowds. Over the summer, my husband and I were walking along the Saint John waterfront and it was “Saint John Idol” night. You know, like American Idol? But with Saint Johnners singing instead. For whatever reason, the whole “Idol” show concept is still surprisingly popular in Saint John, even though in every other place in the world the craze has fizzled out.  It seemed that everyone in Uptown (That’s right, every other city/town has a “downtown” but Saint John has an “Uptown,”) and surrounding areas had amassed into this tiny closed-off-to-vehicles street. Some idiot (because it should be called Saint John Idiot/ American Idiot, in my opinion) was up there singing their heart out and I was stuck with my husband trying to walk on this street through the crowd of both people standing still and watching the Idiot and people also just trying to use the street as a through-way to another part of town (like my husband and I). I started to feel the panic because of all the people around me. My husband was behind me and he could see my body jerking, shaking and trembling as I tried to keep my calm. If I’d been asked to rate my level of panic, it would have been a 10+.

Suddenly, I couldn’t stand it anymore; I needed to be out of that crowd and quickly. You know how they say to stay calm in emergency situations, like if you’re in a crowded building that’s on fire? I was that person who panics and pushes through and stomps on people and kills them. That was me. I was pushing people out of my way in a mad dash to get the hell away from all the fucking people! I don’t remember much about it other than my feeling of panic, but I’m sure I pissed a lot of people off. Although perhaps my panicked voice saying to my husband, “I have to get out of here” made them sympathetic. All I know is my husband grabbed me suddenly by my waist and pushed me into a pub, and out of the crowd. I was still seizuring, but I was out of the source of my anxiety. In about 2 hours, it was as if it had never happened. But it did.

The worst thing about having PNES is I never know when something is going to happen that will spin me into a frenzied state of nervous energy. It’s unpredictable. Some people with PNES can never hold a job. I am determined, however, to beat PNES. (To improve the humor in the piece, read PNES phonetically in the last two sentences.) Where was I? Oh, yes, I will beat PNES. Er… I will overcome PNES. I have strategies. I use self-talk to calm myself down. I try not to take on too many things at once. I try to make sure I take time to take care of myself. I take drugs. Lots of prescription drugs. And I try to always find the humor in life, even in my PNES. The most important thing I’ve learned on my journey with PNES is that I have to put myself first, and keep myself healthy. I’m no good to anyone else if I’m not good to myself first. And on that note, I’m going to go play with my PNES.