2018 Epilepsy Pipeline Conference

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Amanda's Story: Black History Month 2017

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Being remarkABLE
Friday, February 17, 2017
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The following is an account by Amanda Kelly, 27, of Ajax, Ontario, a member of the Twenty-20s Epilepsy Awareness Group, for their remarkABLE video campaign.

I was diagnosed with epilepsy in April of 2013. I don’t remember how I reacted when I was first diagnosed because I had been misdiagnosed for a while. I have complex partial seizures. I was having them in clusters for about a month and a half. I was going in and out constantly. It’s hard to notice for a lot of other people, but my memory was kind of wiped that whole time. I don’t remember much about it. I had someone come in the examination room with me to write down what the doctor had said and then I had looked at it later. It didn’t register.

Understanding the Diagnosis

I called my family to let them know and it didn’t really register with anybody because it wasn’t the type of seizure we’re used to seeing. My assumptions about epilepsy were that people had tonic-clonic seizures and fell to the ground. When I thought of seizures, I thought of what I saw on House or Grey's Anatomy. In those shows, if people had non-convulsive seizures, it was due to some life threatening disease. It was confusing because I knew my brain wasn’t working but I couldn’t do anything about it.

When I was first diagnosed with epilepsy I felt that I was limited and wasn’t allowed to do anything.

My general practitioner had explained to me a list of things I am not allowed to do. She said I am not allowed to take a bath or swim by myself, and, if I go in the shower, I need to let somebody know. Those were just a few things on a long list. At that point you’re thinking, "What can I do?" I wasn’t at work anymore and there was nothing to do. That made things very difficult because I felt that I had nothing left in life.

Living with Fear

Epilepsy is terrifying to me. I admit that I have it. I accept that I have it. I will never deny that I have it, but I’m scared every day. It scares me in my personal life.

Work is something that’s very personal to me. I’m lucky now that I have an amazing support system at work, but right before I was diagnosed, I had my dream job. The job I had been working towards for my entire life. I had my career. That’s when the seizures had started. They were undiagnosed at the time and my work was great. They let me take a medical leave of absence. But 3 months passed and I still wasn’t able to go into work because I became agoraphobic. I had to tell them that I could no longer work there. I was status and I barely knew up from down. My memory was gone and I barely remembered anyone that I worked with. I was out of work for a few years. I have just reached my one-year mark of being back in the work force.

I am terrified every single day that I might go status again and be out of a job. Because then I can’t leave the house, can’t go to work, and can’t do anything. Reliving those 6 months of being misdiagnosed and not knowing what is going to happen the next day is my biggest fear.

Finding Strength

I know I’m allowed to cry. I’m allowed to feel upset. I’m allowed to feel the array of emotions that I didn’t want to feel before because it makes it so real. It makes everything so real to come out and say, “I have epilepsy” or “This is who I am. This is where my life is at.”

I’ve always known I have a specific type of strength within me, but I was forced to use that strength. I forced myself to have that strength at the forefront to be a voice, be an advocate for others and myself.

Because I know I want to succeed, I know I will succeed. I know I have the support system; they want me to succeed. Anything else would be an excuses. Anything else in my life would be excuses. If I said I can’t do this, I won’t do this. They’re excuses. If there’s no truth behind it, it’s an excuse. I know the people and things that make me happy in my life. I’m going to focus on those things because those are part of the person I want to be and I know I am.

I am proud of who I am, where I've come from and where I'm going. My epilepsy is a part of me just as much as the color of my skin. Both of which I wear with pride.

Being remarkABLE

What makes me remarkable is that I have gone through a lot of motions and a lot of emotions but I’m still here. I am a survivor. I’ve learned that I am a remarkable person. All the things that I thought before, I’ve learned they’re insignificant. What matters is the people I surround myself with, the way I take care of myself, and that I’m remarkable.

Listen to Amanda tell her story.

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
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