A Mother's Fight: Unveiling the Silent Struggle of Epilepsy Through the Power of Purple!
As Epilepsy Awareness Month approaches, a Saanichton mother, Catharina Hendriks, bravely shares the deeply traumatic experience of her daughter Willow's first seizure in 2022, a mere few months after her first birthday. Imagine the scene: a joyful moment in their living room, suddenly shattered when Willow, then just a baby, froze completely, her tiny hands contorted in an alarming way. Hendriks' attempts to snap her fingers in front of Willow yielded no response for what felt like an eternity, a chilling couple of minutes before her daughter slowly returned, appearing incredibly sluggish.
Their journey took a concerning turn when, while awaiting results from a referral to a neurologist and an EEG, Willow began experiencing more seizures. These episodes were particularly distressing as her arms would stiffen and turn an alarming purple hue. Hendriks recounts feeling as though their concerns weren't fully taken seriously at the ER, especially since Willow's EEG showed only minimal frontal lobe spiking. Doctors were hesitant to provide a definitive epilepsy diagnosis, partly due to a suspicion of autism, which can also manifest with similar abnormal brain electrical activity.
But here's where it gets controversial... The medical community's initial hesitations, while understandable given the diagnostic complexities, led to a period of intense suffering for Willow and her family. Following the ER visit, Willow's seizures escalated into cluster seizures, a series of rapid, short seizures, each lasting under five minutes. The memory still haunts Hendriks; she admits to shaking even now, recalling the sheer intensity of those months. From July to September, without any epilepsy medication, Willow endured six to eight hours of seizures daily. Can you even begin to imagine the emotional toll that must have taken on a parent?
Finally, a glimmer of hope appeared when a pediatric neurologist re-evaluated Willow's case and confirmed the diagnosis of epilepsy. The relief that followed was profound. "They put her on medication, and I watched my daughter fall asleep with her arms out for the first time in months, and it was relieving to see that; I cried when that happened," Hendriks shares. This starkly contrasted with her previous sleep, where Willow would remain in a rigid, fetal position, legs pedaling, her body unyielding – a sight that was truly eye-opening and marked a significant turning point.
While medication has dramatically reduced Willow's seizures, she still experiences them every couple of days. This ongoing reality has fueled Hendriks' powerful mission to advocate for those living with epilepsy.
For the past three years, during March – Epilepsy Awareness Month – Hendriks has been a beacon of purple, distributing hundreds, if not thousands, of purple ribbons and pins across the Peninsula community. Her inspiration struck when her partner's sister-in-law, who also lives with epilepsy, introduced her to the concept of epilepsy awareness. "We thought that was amazing, but we were actually just shocked at how little was actually going on for epilepsy awareness when the month was coming up. There are so many Canadians who actually struggle with this," she exclaims, highlighting that epilepsy affects approximately one percent of the Canadian population.
And this is the part most people miss... Hendriks has discovered that a significant number of people simply don't understand what epilepsy truly is. It's not just about flashing lights, which only affect three to five percent of individuals with the condition, nor is it solely characterized by the dramatic grand mal seizures most people picture. In reality, seizures can be incredibly varied, and there are numerous types of epilepsy. Hendriks explains, "Some of them you might not even notice. If someone were to have an absent seizure, it just looks like they’re spacing out." This lack of understanding contributes to the stigma that prevents many from seeking help or disclosing their condition.
This year, Hendriks is expanding her campaign by collecting personal stories from individuals with epilepsy to share on the signs she distributes. While she's only received one response so far, she hopes to gather four to six diverse experiences. The feedback she's received from the community, fueled by the awareness pins and ribbons she personally funds, has been overwhelmingly positive. "You should have heard the stories that I started getting: people talking to me about their epilepsy struggles, about their family members who have epilepsy, and how they felt happy to see someone doing this. They felt like they didn’t have to hide as much," she says. This is crucial because, as she points out, stereotypes lead to discrimination, with some employers hesitant to hire individuals with epilepsy due to fear and misunderstanding.
Hendriks' ultimate goal is for Willow's peers to have a better grasp of her condition when she starts school. Equally important is educating the public on how to respond when someone has a seizure. "Stay calm. I’ve literally seen people freak out because of my daughter having a seizure," she recalls, referencing a terrifying incident on a plane. She emphasizes that individuals experiencing a seizure have no control over their bodies and deserve compassion, understanding, and patience, rather than judgment for losing control in public.
Here's a crucial piece of information often overlooked: Not all seizures necessitate a 9-1-1 call. The general guideline, according to epilepsy organizations, is to call for help if a seizure lasts longer than five minutes or if the person sustains an injury. Hendriks deliberately avoids asking for donations during her campaign, as she operates independently and wants to ensure her motives are solely focused on spreading awareness and combating misconceptions. "I want people to understand that they’re still normal human beings. They still have struggles. They are just like other people with disabilities who can have a normal life."
Now, let's open this up for discussion: Hendriks' dedication is truly inspiring, but it also raises questions about societal awareness and support for neurological conditions. Do you believe the public's understanding of epilepsy has improved, or are we still largely in the dark? What more can be done to combat the stigma and discrimination faced by individuals with epilepsy? Share your thoughts and experiences in the comments below – your voice matters!
For those who wish to learn more or contribute to epilepsy research and programs, Hendriks suggests reaching out to the BC Epilepsy Society.
