Did you know it’s epilepsy awareness month? You do now. 1 in 26 people have Epilepsy. Did you also know that 1 in 3 people have had a seizure or will have a seizure during their life? I didn’t. Epilepsy is not something I knew a lot about before I had it. I have left temporal lobe epilepsy, hence the big fluffy poodle that follows me around.

To help shed more light on this disorder this month, here are a few things about epilepsy I wish more people knew.

Epilepsy can be an invisible disorder.

My best friend’s cat had epilepsy when I was growing up. I thought it was funny to watch her fall over (karma)–I don’t any more. Other than the cat, I didn’t know anyone with epilepsy until I found out that my great aunt had it. She was lucky in that she grew out of it later in life and was able to control her seizures with meds without anyone knowing.

But there are over 40 different types of seizures! Some look like a glossy blank stare that is often barely noticeable to an untrained eye, these are absence seizures. I personally have at least a few types of seizures, I have “Drop attacks” called Atonic Seizures this is when I just fall to the ground or collapse with little to no warning (I sometimes have an Aura.) It just looks like I pass out, unfortunately, I often really hurt myself when this happens & have sustained far too many concussions. I also lose consciousness for quite a while & it can take me a very long time to recover. I have nocturnal seizures, which are often associated with Sudep. In 2014/2105 I had 3 Tonic Clonic Seizures, a seizure after 5 minutes is called a status seizure and they are life threatening. I had a TC at the hospital for over 70 minutes so I ended up on life support a couple of times and put into an induced a coma. Here is a link to an awesome resource about Seizure Types.

Epilepsy can appear any time in anyone. You can be born with it, have it as a child and grow out of it, or develop it later in life. I did not develop epilepsy until I was 25. We think it was brought on by a blow to the head I sustained while working at a theme park in Australia. Life can change in an instant.

So much stigma surrounds epilepsy.

Some used to think epilepsy was contagious and could be transmitted through contact. It was also believed that people with epilepsy had diminished intelligence. It was once even called “the falling disease” with lots of supposed causes including: witchcraft, sorcery and demon possession. While this seems ridiculous, it’s not surprising as seizures can be quite scary to watch. I never considered how my seizures might scare others until I witnessed one myself, while attending seizure dog school. It was horrible to see the scared reactions and I get quite emotional thinking about how my seizures affect others who have witnessed them.

Epilepsy is more than just seizures for me.

It’s headaches. Headaches have always been present since the initial head injury during my trip down under. Some headaches are just a dull throb. Others are so bad that sometimes I just have to go to bed. I have tried all sorts of different pain meds but nothing really helps.

It’s insomnia. I also developed insomnia. I just could not sleep. I would sleep for 15 minutes then stay awake for 2 hours then sleep for another 15 minutes then awake for 2 hours. The only real sleep I seemed to get was after a seizure. Still to this day, I take 2 pills at night to knock me out. Doesn’t last long but sleep is sleep. I did not want to use drugs to sleep but after being diagnosed with insomnia at a sleep clinic and exhausting most of the natural practitioners to find answers, I caved.

It’s drug side effects. I’ve tried many different epileptic drugs. Suffering all the side effects without the benefit of not having seizures.Trust me, the side effects are not fun. I felt crazy, angry, depressed, even suicidal. I gained 50 lbs in a month. My hair started to fall out in clumps. Then it went curly. And I mean ringlet curly. Looked like my poodle. I could not talk, could not find words, would stutter like crazy, felt stupid, embarrassed, frustrated and basically felt the world was against me. So I receded.

It’s depression. I would hide so I did not have to talk to anyone. Lost in a fog of pills, the thought of ending it all was always on my mind. Not just because of what I was going through, but because of what I was putting my family and friends through. Becky had two babies under two and me, who at any time could have a seizure. In the state I was in, I did not feel like a man who could contribute anything. I really felt that taking myself out of the equation would make things better for everyone.

It’s hope. Looking back at it now, the only thing that stopped me from acting on my depression was the ability to separate the real me in my head from the ‘zombie’ me controlling my body. I knew who I was and this was not me. Plus the thought of leaving my kids was unbearable. With any sickness, disease, disability, there is always the potential for depression. But one thing sickness can not rob you of is your ability to look at your situation through rose coloured glasses. Through all the drugs, the seizures and the constant crushing thoughts of helplessness, there was always a small part of me that knew this would pass.

But it’s not rose coloured glasses every day.

I still struggle with headaches and side effects from medication. It’s hard to stay positive sometimes. It’s still hard for me to put myself out there, hard to talk to people. That’s why I groom my guide dog Oslo like I do, she helps me engage with people and keeps me talking. Well that, and I think it’s hilarious: big dude with a fluffy poodle. Drives the old ladies wild haha.

I want to help heal myself through helping others.

Our forest is a magical place where anything can happen. I feel amazing when I’m up there, grounded and connected. My dream of creating a self-sustaining retreat is finally happening. So I choose to look at my situation as a crash course in empathy. If my dream is to help people heal, I feel the world has allowed me to walk through difficulties to prepare myself to help people with their own healing. I’ve been there. I’ve felt that way. I can relate and I sure can sympathize. This is the reason I think I have gone through this ordeal. “What doesn’t kill you…..”

So wear purple in support of epilepsy awareness month.

Another way you can support epilepsy this month, or any month, is by donating to a cause close to my heart: the Lion’s Foundation of Canada Dog Guides program. This foundation supplies people with much needed service dogs, including me with my seizure guide dog Oslo. Believe it or not it can cost up to $25,000 to fully train a guide dog and they can make a huge impact on someone’s life. Read more about our journey with Oslo here.

And, donate to the Lion’s Foundation of Canada Dog Guides here.

Thanks for your support!

Jay