Cassandra Potichnyj first started having seizures at just five weeks old. While being breastfed by her mother, she experienced her first seizure and began choking on her milk.
She was prescribed epilepsy medication and her epilepsy seemed stable until the age of 15, when she began having auras, experiencing them as déjà vus. These involved what she calls an “overwhelming sense of fear”, and due to the feeling of panic they brought on, they were misdiagnosed as anxiety attacks. “I was told to calm down”, she says.
It wasn’t until she started having tonic-clonic seizures that they were recognised as seizures.
Having had her epilepsy mistaken for a different condition was “frustrating” for Cassy. “Prior to that, people had been telling me it was just anxiety,” she says. “I knew deep down that something more serious was happening, but it took time for my doctors to identify the seizures.”
Cassy, 35, lives in Canada, with her parents. She has two brothers and a young nephew. “My family is of Ukrainian heritage and we are very close-knit,” she says. “We are always supportive of each other, especially during challenging times.”
Being diagnosed with epilepsy, while hard in itself, also came at a difficult time for Cassy, following the death of a lifelong friend.
She explains: “Receiving the diagnosis was incredibly frightening, especially during a time when I was already grieving. That same year, my lifelong best friend, who had been like a sister to me, passed away from a brain tumour. The emotional weight of those events was overwhelming. It felt surreal that we had both faced brain-related challenges and surgeries.”
As many people with epilepsy experience, Cassy initially began trying different epilepsy medications to see if any would work for her. This continued for years, from the age of 15 until she was 33. Unfortunately, the experience revealed that her epilepsy was medicine resistant.
“The trial-and-error process of finding effective medication was both terrifying and heartbreaking,” Cassy says. “Despite being on four different seizure medications, my seizures remained uncontrolled. It felt as though epilepsy was holding me captive and I couldn’t understand why nothing was working.
“People often told me I was an anxious person, but what they didn’t understand was that I had every reason to be. Living with epilepsy was isolating, unpredictable, and terrifying, and I often felt like no one truly understood the weight I was carrying.”
Regain control
Fortunately for Cassy, she was a candidate for surgery, which was an opportunity she grabbed with both hands.
“Undergoing surgery was a pivotal moment in my life,” she says. “Surprisingly, I wasn’t scared; I saw it as my best chance to regain control of my life.
“Having lived with epilepsy my entire life – and having lost my best friend to a brain condition – I felt there was nothing to lose and everything to gain.”
Cassy underwent two surgeries. In the first, she had electrodes implanted in her brain to identify exactly where the seizures were coming from – the seizure focus. The second surgery removed the focus.
“The surgeries completely transformed my life. I’ve been seizure-free since then, and I feel truly free.”
While she was experiencing a lot of seizures, epilepsy took a toll on Cassy, leaving her feeling different and isolated at that time in her life.
She adds: “It affected my friendships, hobbies and overall sense of self. However, it also taught me resilience and empathy.
“Today, I feel deeply connected to others living with epilepsy because I understand their struggles firsthand. I’ve shifted my focus to living authentically and helping others, rather than seeking validation from the world.
“I’ve developed a deep passion for helping others navigate their epilepsy journeys.”
One part of the story
Turning her troubles into strengths, Cassy set out to help more people learn about and understand epilepsy. Cassy is now a children’s author, focussing on writing books about epilepsy.
Cassy’s children’s book, My Shaky World, explores the story of Cashew, a little girl living with epilepsy.
“Through fun rhymes and colourful illustrations, it helps children and families understand seizures, auras, and the journey of managing epilepsy with courage and hope.
“Inspired by my own experiences, the book offers a message of resilience and support for kids facing similar challenges.
“Growing up with epilepsy was difficult, not only because of the condition itself but also because of the silence surrounding it. Many people treated me differently, which left me feeling excluded and misunderstood.
“I wanted to create a book that empowers children with epilepsy while educating others to foster empathy and acceptance.
“After my surgeries, I felt a deep desire to support children facing similar experiences. On day two of waking up from surgery, I told my parents I wanted to write a book. My goal was to help kids understand their journey in a fun and rhyming way!
“Looking back, I wish I had known more about my condition when I was younger. I wish I had someone to explain it to me in a way that would have made me feel less alone. That’s what I want to do for every child now.
“Cashew, the main character, has a group of special friends who are always by her side during her aura and throughout her seizure.
“Through ‘My Shaky World’, I want to show kids that epilepsy doesn’t make someone so different – it’s just one part of their story.
“Children with epilepsy have the same dreams, feelings and potential as anyone else, and they deserve the same opportunities for amazing, joy-filled lives.
“By understanding epilepsy and supporting one another, we can create a world where every child feels included, valued, and empowered to shine.”
My Shaky World is available to buy from Amazon.
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