Epilepsy Gala 2024

My name is Cassandra Potichnyj, and my journey with epilepsy began when I was just six weeks old. It started in my mother’s arms while she was breastfeeding me. I suddenly stopped nursing, and my tiny body turned blue as I struggled for air. My breaths were spaced 30 seconds apart, and I was unresponsive, with a vacant stare and 20-second apnea spells. It was terrifying for my parents, as they watched their newborn suffer from something they didn’t yet understand.

Doctors quickly noted respiratory pauses and abnormalities in the mid-temporal and right regions of my brain. By the time I was four months old, repeated EEGs and CT scans showed abnormalities in my left temporal lobe, leading to an initial suspicion of a brain tumor. The words “this baby is in severe danger” echoed in my parents’ minds as I was rushed for further testing. Thankfully, the tumor diagnosis was incorrect, but my journey with seizures and misdiagnoses was far from over.

Seizures continued relentlessly, with episodes that resembled encephalitis and chronic brain inflammation. Early on, I was prescribed phenobarbital to manage the seizures, but it was only the beginning of a long and complicated medical journey.
By the time I was 13, my seizures had evolved. I began experiencing unusual sensations throughout my body, accompanied by déjà vu. I vividly remember running out of my high school gymnasium during an assembly, only to wake up later in a haze. Despite these episodes, the medical community remained baffled, mislabeling my symptoms as a mysterious “virus.”

In my late teens, these electric sensations and déjà vu episodes persisted, accompanied by behaviors I had no control over during my seizures. I would squeeze my neck and a nearby hand while uttering words in Ukrainian—my unconscious response to the trauma my brain endured. Despite the severity of these symptoms, I was frequently misdiagnosed, often told my episodes were “just anxiety” or even “acid reflux.”

For years, I felt unheard. My seizures were misinterpreted, and even during terrifying grand mal seizures, paramedics dismissed them as panic attacks. I began to question my sanity and developed crippling anxiety.

A turning point came when I was finally diagnosed with complex partial seizures of the left temporal lobe. Though this diagnosis was a relief, it didn’t solve the challenges I faced daily. My seizures robbed me of memory, speech, and confidence, and each episode left me physically and emotionally drained.

My darkest moment came during university. My best friend, the person I trusted to hold my hand during my auras, was diagnosed with a brain tumor. Tragically, she didn’t survive her surgery. The loss shattered me, and my grief worsened my epileptic episodes. I often wondered how two best friends could be dealt such cruel fates—both fighting battles within our brains.

For years, medications failed to control my seizures. Their side effects left me drowsy, anxious, and still experiencing countless auras. At last, my neurologist and I discussed brain surgery. I was petrified, but I was determined to find relief. Following a comprehensive evaluation by an incredible team at Toronto Western Hospital, I learned I was an ideal candidate for left temporal lobe surgery.

The surgery was life changing. Though it came with risks, it gave me a chance to live a life free from constant fear. For the first time, I could focus on healing and finding joy in everyday moments. I now work with an occupational therapist to manage memory challenges and vocabulary issues as my brain continues to recover.

This journey has taught me resilience and advocacy. As patients, we must educate ourselves and speak up when something feels wrong. Epilepsy isn’t just about seizures; it’s about mental health, trauma, and navigating a system that doesn’t always understand us.

To my family and friends, thank you for standing by me through every setback and triumph. To organizations all over the world, thank you for your unwavering support. And to everyone here tonight, I pray for a future where epilepsy is a condition of the past.

Together, we can create a world of understanding, awareness, and hope.