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Living with epilepsy can be tough. It can feel lonely, scary and prohibitive. It can feel like life itself is against you.
At Empatica, we believe that epilepsy should not prevent people from living the lives they want. This is why we have dedicated ourselves to creating Embrace, the world’s most advanced smart watch for epilepsy monitoring. And this is why we believe in the power of sharing the incredible stories of inspirational people, who overcame the stigma of epilepsy and made their voices heard.
This is the breathtaking story of Phylis Feiner Johnson, creator of www.epilepsytalk.com. It’s a celebration of willpower, faith and bravery. We hope it empowers you to chase your dreams, and to support each other in the ongoing battle against epilepsy.
by Phylis Feiner Johnson
I almost died.
For a while I couldn’t even read. My brain needed rebooting. They told me my heart had stopped and I was lucky to be alive. It took me several months for my cognitive abilities to return. Months during which I had plenty of time to think.
Previously, I had a high paying job in advertising, which I hated. I loved my clients and they loved me. But I wanted to help people. It was time to give back. And my near-death experience gave me the perfect opportunity. (Once I found the keyboard!).
…I wanted a haven. Where people come and learn, ask questions, even vent.
I went to all sorts of non-profit organizations. No one wanted me. Until I found the Epilepsy Foundation of Eastern PA who welcomed me with open arms. And the monthly support groups were like manna to the soul.
Nevertheless, it was not enough for me. I wanted to write about epilepsy, a subject dear to my heart. I sought to put epilepsy out in the open and talk about it. After decades of epilepsy, that’s what I knew best. Along with the fear, discrimination and ignorance that went with it.
My parents wouldn’t even say the “E” word.
Told by my step-father surgeon that my brain waves were just uneven. As I smashed into walls and fell up and down the stairs. But there was nothing wrong with me. I couldn’t bear it. And knew that I was not alone.
The purpose was to educate and inform – those who had epilepsy, plus their near and dear ones.
I truly believe, in their heart of hearts, that people want to help. They are kind and caring. Not ignorant and selfish fools. It was just a matter of showing them how. I wanted to start a website. Problem was, I didn’t have a clue how. Passion was my motivation.
Helping others was the key.
If we can’t help each other, who can? And so, after much research, gnashing of teeth and a few false starts, the website EpilepsyTalk was born. The purpose was to educate and inform – those who had epilepsy, plus their near and dear ones.
After being treated like a pariah, and discriminated by even my own parents, I wanted a haven. Where people come and learn, ask questions, even vent. The kind, caring, compassionate, thirsty, hungry, aching members became my life.
The reason I got up in the morning.
Now, www.epilepsytalk.com is an award-winning website. With a searchable database of more than 400 articles. Answering every conceivable question people might have about epilepsy. Plus, thousands of discussions about how they cope with their conditions.
People who have wanted to commit suicide have been talked “off the ledge”. Others have helped others realize how to cope and even prosper.
My passion has had its rewards. Literally and figuratively. Recently, my husband and I were made “King and Queen” at the annual Epilepsy Foundation of PA’s annual fund-raising gala.
We are very proud.
But I am most proud of my EpilepsyTalk family and their contributions to our society.