Epilepsy, from my point of view

Epilepsy is one of those medical conditions we all ‘know about’ may know someone with it, but don’t understand it. A family we know had a son with it, but I didn’t know him too well,  I went to school with his younger brother and never witnessed his seizures.

The first time I saw a seizure, I was 18 or 19. A young girl flailing about on the floor of a restaurant, white froth oozing from her mouth pooling on the carpet around her, her dress riding up to her armpits as her legs thrashed. I was mesmerized, couldn’t stop looking, no clue what to do or even what was happening. And I didn’t until 30 years later, when diagnosed with epilepsy myself.

I never realized what an epileptic went through, what their families endured, how insufficient the resources were, especially for adults. Children with epilepsy have full access to diagnostic and treatment options, including neurologists, surgeons, and psychiatrists. But as with all things, once a child reaches 18, they’ve aged out of the system and, now as adults, they’re thrown into an unknown world, blindfolded.

As I’ve discovered, the access to those same services offered to our young, aren’t there. As adults, we are left scrambling even more isolated and forgotten by the medical system.

I remember during that first year searching for help some sort of group that would allow me to freely express my fears in a welcoming surrounding of empathy and understanding. Not one of my doctors spoke of any such program, were focused on the disease and unanswered questions of why. It took many hours of Googling before I stumbled across the BC Epilepsy Society in Vancouver and The Centre for Epilepsy & Seizure Education in Abbotsford. I’d contacted both via email asking about support groups and only heard back from the Epilepsy Society. They hadn’t any groups other than the one offered in Vancouver, an hour away. For those of us who couldn’t attend in person, an online group was the other option.

I was diagnosed in the spring of 2015 and it wasn’t until the end of 2016 before I attended my first group meeting and I’ve been attending ever since, even after my defection to Alberta.

As a society, we take care of our young to the point of neglecting our own selves. And that’s how it should be. But we’re a sandwich made up of sturdy outer layers, covering skimpy layers of dried up meat and limp lettuce. So intent on caring for the before and after we’ve totally forgotten about the middle.

Of course, this is only my opinion and applies to my view of how epilepsy has been stuffed away into the recesses buried beneath layers of dust and covered with cobwebs. My experiences over the last 6 years can attest to the lack of care and acknowledgement provided to adults. I was fortunate, however. Coming from a family where both my mother and sister knew the inner workings of our medical system gave me a small advantage. They knew about red tape, the rungs of the ladder and how to climb them. Gaining access to a neurologist in 2015 was easier than back in 2012 but that’s as far as it went. The seizure unit was another matter. So inadequate for such a large population, the wait list was mammoth. A combination of not enough beds and very few doctors meant years before admittance. And that was just to start the process.

Because of this lack of resources, I, like many others before and after, was referred to the Foothills Medical Centre in Calgary and elsewhere in Canada. In retrospect, I should be grateful to my home province for ignoring my needs. The level of care I’ve received from the team of professionals here in Calgary far exceeds the standards available back in BC, in my honest opinion. If it weren’t for these doctors, surgeons, nurses, technicians, and researchers I don’t believe I’d be here today.