My Life With Epilepsy
A first-hand account by one of our franchisees on her experience and journey living with Epilepsy.
WP Creations is made up of a group of women (and sometimes men!) who come with an array of experiences and from various walks of life. We would consider ourselves an inclusive company, always willing to learn what we don't know.
For those unfamiliar with epilepsy, it is comprised of these main factors
1. Epilepsy is the fourth most common neurological disorder and affects people of all ages.
2. Epilepsy means the same thing as "seizure disorders."
3. Epilepsy is characterized by unpredictable seizures and can cause other health problems.
4. Epilepsy is a spectrum condition with a wide range of seizure types and control varying from person-to-person.
5. Public misunderstandings of epilepsy cause challenges that are often worse than the seizures.
Some signs are obvious and some are not
As is stated, it is different for everyone and for Epilepsy Awareness month, we are honoured that one of our own franchisees has written about her experiences and journey with epilepsy. Thank you Jocelyn for sharing your story.
“I am epileptic. Something I was embarrassed to say to people, because in my mind I could become a burden at some point, even though that was never the case. Throughout my elementary years, teachers described me as a daydreamer. My mom knew that it was more than just daydreaming as she had witnessed what she called at the time ‘episodes’. She described to doctors that I’d lose all muscle control in my face. During conversations, mid-story my eyes would droop, my cheeks and mouth would fall and... Nothing.
She tried getting my attention over and over again by clapping in front of my face, tapping me on my shoulder, calling my name, even tried scaring me. I didn't flinch. I checked out reality for about 30 seconds to a minute at a time. This made it very difficult for me to learn in school because I was having anywhere from 30-50 of these ‘episodes’ a day.
Elementary school is difficult as a child to begin with, but imagine being in grade 6 and having a Grand Mal seizure in front of all your friends. Not only is it traumatizing for the child who had the seizure, but it was very emotional for the kids who witnessed it. Crying and hysterical my friends thought they just witnessed me die.
Sounds dramatic, but it is pretty terrifying to witness, no matter what age, let alone for children.
A Grand Mal seizure is an entire loss of body control along with violent convulsions.
Some epileptics give a very noticeable sign when they are about to have a Grand Mal. Not everyone smells burnt toast. My sign before having a Grand Mal was always the same, whatever I was doing at that particular moment would come to a halt. Nothing during that specific moment was the ultimate trigger. I would stop dead in my tracks, raise my hands half way and drop whatever was in my hands at the time and let out this very loud noise, as if I took a deep breath and forcefully let it go.
It happened quickly but my signs gave people about 10 seconds to run to my direction stand about a foot behind me so that once I started to fall, which was always backwards, they could catch me and guide me to the floor. This was very important because when someone has a seizure, they are completely stiff when they fall.
If not caught when falling, accidents can happen, which sometimes is more dangerous than the actual seizure. I, personally, would get migraines afterwards if I wasn't caught by someone breaking my fall.
Growing up my mom was my hero. She was the one who taught me my own signs, what to look out for, and how to help myself if no one was around. She was my advocate in schools and at work. Having kids of my own now has opened my eyes to just how scared she must have been and how much she wanted to protect me.
When I was in my late teens early 20’s I looked into get a seizure response dog. I did qualify; however, they are extremely expensive. They are trained to assist the individual when a seizure occurs, such as an alert for help by barking, getting between the floor and the individual to help break the fall. The dog will also lay beside the seizing person if they are alone and protect the individual from further injury.
Seizure Response Dog
I never ended up getting one, but with the help of medications, lifestyle changes, and becoming a mom, I have been seizure free for 12 years!
My 7-year-old knows that mommy has in the past fallen and shaken like a fish out of the water. She has never seen this as it’s been 12 years since my last one. Though I have told her if mommy falls and you can’t wake me or talk to me, get my phone, she has my password, and call/FaceTime daddy or grandma. If they don’t answer call/FaceTime grandpa or Aunty. Thankfully that has yet to happen. I am in the process of weaning off medication. This will be a long process, but I am hopeful! I feel a change in myself. It is possible to grow out of seizures or grow into them. I would like to think that I am one of the lucky ones.”
It is our hope at WP Creations that bringing awareness to epilepsy not only creates a broader support network for those who are suffering from it and their loved ones, but also provides financial support to those requiring extra services and of course with hopes to one day finding a cure!