Over the years since my epilepsy diagnosis, I’ve encountered all sorts of individuals and found myself in places I never imagined.
Almost 2 years after my sentencing, I’d hadn’t connected with anyone, other than my old boss, who had epilepsy or knew what I was experiencing. I had my sister, of course, a medical professional who could advocate and advise me on the technical side and I had my doctors. But what I didn’t have was a support group, a community of peers who could empathize. Try as I might to scour the internet searching for that much needed support, it took until November 2016 before I found BC Epilepsy Society (BCES) and another month before I attended my first meeting.
Those early days, weeks, years were tough on me and my family. It wasn’t just the seizures themselves; it was the combination of them, side effects from the medication, not understanding what was happening to me, the restrictive nature of the disease itself, the isolation, fear, anxiety and depression. So many losses. So many unknowns.
Can’t work. Can’t drive. Can’t bathe or swim. Can’t take over the counter drugs to alleviate allergies and cold symptoms. Don’t forget to take your mediation Don’t overdo things. Don’t worry. Stay positive. Eat well. Exercise. Get a good sleep. Get help. And on and on. It wasn’t a to do list, it was a don’t—can’t—shouldn’t—should instruction manual.’ I was a child learning the ABCs of behaviour instructed on the how and why’s we all teach our children as they grow up. I certainly felt like a little kid restricted by rules and limited by my own inabilities.
I was an intelligent woman approaching 50, independent, successful, on a path to greater and brighter horizons when, snap, I was transported back to childhood, or so it seemed. My existing life vanished leaving me stuck in a time warp, taken back to my early years of insecurities, and loneliness.
7 years have passed since then. 7 years of seizures, pills, ambulances and hospitals, doctors, tests, commuting to Calgary, surgeries, depression, frustration and anger. A time of many people, places, and feelings. And that same damn list; do—don’t—can’t—shouldn’t—and more.
The multiple hospital visits spending hours, days, weeks away from home, the countless ambulance rides, a growing list of doctors haven’t changed. The only difference now is I catch a bus or taxi, not a plane.
But with everything else, and we tell ourselves this all the time, there is always someone else out there worse off. The black cloud that follows me is more of a dark grey. A slight difference in hue between the darkest part of the night and pre-dawn. I mean, yes, my life is complicated, frustrating, and often scary, but how does it compare to another? What about the patient who can’t have surgery? The one who can’t communicate, their speech garbled beyond comprehension. And all those who don’t have the support base or an advocate proficient in medical mumbo jumbo? People with epilepsy suffering from daily seizures, multiple fractures and bruises from injuries sustained during an event? The black cloud they live under is dark, forbidding, heralding a storm of the likes I’d never experienced. I am fortunate to have the support of my family and now, a Chinook wind to break up my cloud and allow the sun to shine over me.
i have blessings a plenty,
the love and support of many.
i have survived the darkest hours,
kept dry from the torrential showers.
i can’t speak for you and you not for me.
we’re tough and we’re strong.
we’ll get by just you wait and see.
for centuries we’ve struggled and carried on,
battled anxiety, depression and faulty neurons.
we are epilepsy warriors standing together,
facing a foe which hides inside
affecting 65 million worldwide
Always remember, you’re not alone that you’re one of many.
You’re an inspiration to others who suffer from a chronic illness, biding their time until they can be cured.
We know loneliness, we know depression and anxiety, we face our fears every minute of every day.
Sometimes we’re successful, other times not so much, but we are fierce, determined and tough as steel.