Happy New Year—one month late.
Whether you live with epilepsy, pnes, or both, and no matter the frequency of your seizures, the recovery period isn’t just regaining the physical balance, returning to your baseline as neurologists state, it also encompasses the mind. That emotional aspect of ‘not again’ what did I do wrong? How could I have avoided it? The self blame attached to each event can be strong. At least it is for me.
Having both epileptic and non-epileptic seizures and unable to tell the difference is frustrating and scary. The fear of an epileptic event lasting longer than is safe and the anxiety of whether brain damage is a possibility, overwhelms my emotional systems, increases my anxiety, and drives me further into depression. A non-epileptic event triggers guilt and shame over something I should be able to control, that my mind should be able to override. Even two and a half years since my pnes diagnosis, those same knee-jerk reactions still exist. What did I do to cause it? I should have been able to stop it. The illogical refusal to believe it was my epilepsy, not the pnes that occurred. Hoping it was the neurons misfiring and not my emotional state that tripped it. My response is not unusual. It’s felt by others suffering with both conditions, the battle of convincing friends and family that they’re real, you’re not faking them. Having to educate medical professionals who insist on calling them pseudo seizures, that it’s a cry for attention, and they’re not ‘real’ seizures. It’s a vicious cycle of seizure—blame—worry; fear—depression and anxiety—even anger.
Thankfully, through the interventions of antidepressants, therapy, and frayed ties to the positive outlook I’ve always exhibited, I can talk myself off the ledge—sometimes. Case in point, my most recent seizure.
I was on my way to the SMU for my weekly visit when I suddenly became disoriented, bumping into things as I stumbled along the corridor past the cafeteria in Foothills. My vision, disrupted by the seizure, could not find the internet setting to connect to the hospital’s Wi-Fi. I couldn’t even find the AHS Volunteer icon to log in. It was as if I was blind, couldn’t ‘see’ my phone, the floor, the walls, people, or objects blocking my path. I recall asking for help, stating I was having a seizure. And then. Nothing.
I awoke sometime later, hours maybe, in the emergency department, drugged up, attached to an IV, stickers and wires attached to my chest, a catheter inserted so as not to wet the bed. The doctor spoke to me, but I don’t remember it. I do not recall the rest of that day, night, and awaken the next day dopey, dizzy, and unable to stand.
They didn’t know which type of seizure I had. Informed me it lasted about 18 minutes and took 8mg of Ativan and about 2,500mg of Dilantin to stop it. And there was some concern over my contracting pneumonia and added an antibiotic to my cocktail. They kept me for 3 days, only discharging me until I could walk and use the bathroom by myself. A second chest x-ray confirmed there was no pneumonia, and I was cleared to go home.
I was 4 days away from 6 months of seizure freedom. 176 days since my last visit to the emergency department. It was the longest I’ve ever gone since my diagnosis back in 2015.
Was I disappointed? Yes. Did I blame myself? Not really. I hadn’t felt stressed. Didn’t feel depressed. Wasn’t anxious or worried. I’d been focused on minor projects to keep my mind occupied. UPLIFT, the skill building program I co-facilitated, was starting the day after my seizure and I was looking forward to it. In addition, my book, the memoir I’d been working on since 2016, was finally complete and, with my son’s help, was now published on Amazon. A major feat for someone who wrote poetry and journaled. I wasn’t a fiction writer, hadn’t planned on writing a book. It just happened. As far as I could tell, there was no reason for the seizure to occur. I certainly didn’t cause it. At least not consciously.
It’s now 8 days since and I’m just now feeling ‘normal’ that I’m back to my baseline and all those drugs have left my system and I can move on.
UPLIFT starts today. One week later than scheduled. The combination of cognitive behaviour therapy and mindfulness techniques will go a long way in my road to recovery. Today is the beginning of a new record, a new goal. It began with getting to one month, then two, surpassing three and then shooting for four. As we’ll show this next group of participants, it’s all about being in the moment, not looking backwards, nor searching for something you can’t see.
One day at a time. One moment. An hour or a minute. Your daily life, who you are, is not all about what was and definitely not what you can’t foresee. It’s the here and the now. A moment in time, a passing thought, a brief feeling. Not a prediction or omen. Just you right now.
Wishing you all the best in 2023,
Wishing you only happy times,
Wishing you many carefree days,
Here’s to healthy and prosperous months,
And as always, these are my words, my thoughts and feelings and shouldn’t be construed as medical advice.
Hugs,