2018 Purple Day Ambassador’s Story
I was diagnosed with Petit Mal Epilepsy (Absence Seizures) in the summer of 1993. I had just turned 20. When told this, I did not want to accept the Epilepsy diagnosis, and I did not want to be singled out as different from everyone else. I had a friend at school with Epilepsy, and I had seen the types of seizures he had, and that is why I was in denial.
I just kept asking myself “Why me”?
After my neurologist prescribed me Carbamazepine to start off with, he informed me that I couldn’t drive, couldn’t operate machinery, I had to be extra careful when at the gym ( lifting weights ) and cycling, and various other precautions and restrictions. I thought, “What kind of life can I lead?” I accepted the fact I couldn’t drive, but the rest, was almost like cutting off limbs.
Eventually, after a matter of time, I began to accept my condition, but I was not going to let it control my life. I still cycled anywhere and everywhere I needed to go, including to work. I still went to the gym frequently, (with friends), and was still kept in the employment of a plastics company, operating machinery, with colleagues keeping a close watch on me.
But just when I thought all was going really well, I began to have seizures again. With this, my medication was gradually increased. By this time I had moved to another town with my parents. Being in a new town, I knew how other people looked at, and treated people with Epilepsy. Basically, a person with Epilepsy should be given a wide berth, and shouldn’t be permitted to have a normal life, and should be treated with kid gloves.
So I chose to keep my Epilepsy quiet from everyone, even when applying for jobs. A decision I would regret, as over the following few years, I would end up having seizures in the workplace, in front of friends and in public. Even when I didn’t have any seizures, a friend and work colleague would tell of my Epilepsy to my employer, and of course led to my dismissal. Just because I have EPILEPSY. This made me think back to when I was first diagnosed: “What in the world can I do?”
With my seizures becoming more frequent, my neurologist, not only upped my dosages, but began to add another anti-seizure drug to what I was already taking. Over a period of 6-8 years, I had been prescribed a total of four different anti-seizure medications, and all different dosages. I experienced some nasty side effects when on some of these medications.
I still tried to carry on with a normal life, but with the thought of when was I going to have another seizure playing on my mind.
After sometime, I made the decision to be honest with myself, and with others, and declared the fact I had Epilepsy and that it was being fairly much controlled with medication. As a child I had uncontrollable fits of laughter, but it wasn’t until the age of 38 that I was diagnosed with Gelastic Epilepsy from a Hypothalamic Hamartoma.
I was placed on a new medication 15 months ago, and I have not had a seizure of any kind since.
From the day of my diagnosis, it was hard to accept my condition, but gradually I accepted it, and no matter how often I had a seizure, I never let my condition control what I can or cannot do. I still remained successful working within the security industry and as a Doorman/Bouncer. I am still a keen visitor to the gym, and I am striving to be successful in the sport of powerlifting.
At the moment, I am a security guard at a hospital, where my colleagues and employers are comfortable with knowing of my Epilepsy. And I am not ashamed or embarrassed to talk to and educate others about my Epilepsy, and the types of seizures I have. That is why I am telling you my story and asking you to talk about Epilepsy.
Happy Valley-Goose Bay, Labrador
Look who popped by for a visit! Happy to have our 2018 Purple Day Ambassador visiting from Labrador.
Pictured: Purple Day Ambassador 2018 Edward Pilgrim-Turner and ENL Community Information Officer Sarah Mercer.
You have read Edwards story. Many of you are the same age as Edward and can imagine how it would feel if you were living with epilepsy. Perhaps you are living with epilepsy but have never talked openly about your experience.
Epilepsy Newfoundland and Labrador would like to see all those living with epilepsy feel as confident as Edward does, but unfortunately not everyone feels comfortable enough to talk freely about their epilepsy.
We would like you to help us change that.
March 26th is Purple Day, a global initiative to help end the stigma associated with epilepsy and let those living with seizures know they are not alone.
Last year, here in Newfoundland and Labrador, close to 4000 people from all corners of our great province hopped, danced, took to social media, donated their spare change, held events, shared information and most of all, wore their purple proudly.
On March 26th, Newfoundlanders and Labradorians can once again take one simple step to show individuals and families who face epilepsy, that we understand, and they are not alone: we will wear purple. We will do so for people like Edward, and the other 10,000 people of this province who live with seizures every day.
Will you stand with us?
- On March 26th please wear an Epilepsy ribbon and take to Social Media to announce your support for Purple Day. There is a large amount of stigma and misunderstanding surrounding Epilepsy and we can use technology to help educate the public, while supporting those diagnosed with Epilepsy. Talk about Purple Day on Twitter, Facebook and any other venue that will get the word out there. We will share all your messages on our social media pages, as well as our website.
Imagine how inspiring it could be if for one day, everyone in the province wore Purple for Epilepsy. With your help we can make Newfoundland and Labrador positively purple!
We thank you for your continuous support and look forward to celebrating and sharing this day with you and the rest of the province.
Epilepsy Newfoundland and Labrador
Visit our website: www.epilepsynl.com
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