SUDEPAware

On the morning of September 19, 2008, I knew there was something wrong. I could feel it.

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At the age of 26, my brother Jesse’s dreams were shattered and he was robbed of his future. We didn’t know why. Jesse was diagnosed with epilepsy at the age of 16. At the time we knew very little about it. For 10 years, Jesse lived with the notion that he would just have to take medication every day, but that he would be fine and live a long, healthy life.

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It wasn’t until the June after his passing that we learned about SUDEP. It was a short letter in the mail that contained the cause of Jesse’s death: ‘Sudden Unexpected Death in EPilepsy’.

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Jesse

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Although he was considered a quiet young man, Jesse managed to make an impact on everyone he met throughout his 26 years. He had a soft heart and he was known for his contagious laughter, bright smile and generosity. He was helpful, kind and had a big heart. He was willing to assist anyone and everyone, including animals. On one occasion, he even stopped traffic to rescue a caterpillar from the road.

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Jesse played competitive hockey and was well known for his gut-wrenching hits. A skilled and dedicated player, Jesse always gave his all each time he played. It always seemed like the world stopped when he stepped on the ice - seizures ceased to exist and all daily stressors were gone. It was an escape. His therapy.

 

He never let his epilepsy diagnosis stop him from doing what he loved.

 

Epilepsy

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Diagnosed with epilepsy when he was 16 years old, Jesse experienced Generalized Tonic Clonic (Grand Mal) seizures and was treated with several different medications throughout the 10 years he lived with the disease. Despite a couple of different episodes, his seizures were generally similar. They began happening during the day and eventually started occurring at night.

 

Seizures were not the only thing that Jesse had to deal with.

 

He used to say that he felt like something was inside his head, and that it caused him discomfort. His only relief was to hold his head between his knees.

 

He wasn’t offered much help with this.

 

Giving back

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Watching my brother live with epilepsy made me want to give back and help others live well with epilepsy.

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Before I learned about SUDEP, I started volunteering at the local Epilepsy Association. I participated in fundraisers and spread awareness in memory of Jesse. We also established the Jesse Payne Memorial Bursary for individuals living with epilepsy who are seeking financial assistance for post-secondary education.

 

After I learned about SUDEP, I started educating family and friends. I began talking openly about Jesse’s story and his tragic ending. I even spoke on CBC Radio, all the while looking for new ways to remember Jesse and share his story.

 

I then founded the Jesse Payne Memorial Dog Walk. This walk gave friends and family a way to remember Jesse and support one of his great loves – the animals at the local shelter.

 

Through these efforts, I hope to honour my brother’s life and to let more and more people know about SUDEP, with the goal of preventing it in the future.

 

Saying goodbye

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Jesse spent his entire diagnosis living the way he always wanted. Even though life may have been frustrating at times, he always maintained his gentle and loving spirit. He spent his life unknowingly showing me the meaning of true friendship, family and unconditional love. In death, he continues to teach me about the sacredness and strength of the sibling bond and the importance of being yourself.

 

His death flipped my world upside down and I am forever changed. I no longer laugh until it hurts. Our childhood home feels empty and quiet. Hockey has never been the same and I wake up every single day hoping it was all just a horrific nightmare.

 

Although seven years have passed, I am still fearful of a future without him here. We always made plans to face everything together and now I face the world alone, without my biggest fan and supporter and, perhaps most importantly, without my best friend. I will live the rest of my life without my brother, and I don’t know why.

 

Moving forward will be difficult, but my mission to bring awareness about epilepsy and SUDEP has just begun.

 

Allicia Payne
July 2015