Sarah’s story: Helping others with epilepsy live their best livesMay 06, 2022 02:23PM ● By Tom Haraldsen
For Sarah Hawkes, it happened the first time without her realizing it.
She was 15, sitting in her room painting, and waiting for the 9 p.m. family tradition of gathering to read scriptures. But 9 p.m. came and, as she recalled, “that time passed with no one saying anything, so I continued to paint. Eventually, I looked up from my work and the clock read 10:30.”
So she groaned, set down her brush, and went downstairs where her dad sat casually reading on the couch.
“From the staircase, I complained like the teenage girl I was, ‘Ugh, can we just read already so I can go to bed?’ My dad raised his eyebrow at me and told me, ‘We already did.’ Again, like a teenage girl, I folded my arms and huffed. ‘What? Why didn’t you tell me?’ That was when he gave me his full attention, staring at me, and said, ‘Sarah… you were there.’”
She had just had an epileptic seizure. That was 11 years ago. Now Sarah, 26, works as an education coordinator for a company in Washington, D.C. She has graduated from universities with two degrees, including an LLM in Peace Operations, Humanitarian Law, and Conflict from the National University of Ireland at Galway; played competitive rugby at BYU, and lived with a neurological disorder that affects nearly 3.5 million people in the United States, including 470,000 children, according to the CDC.
It has led Sarah, who attended both her sophomore and junior years at Viewmont High School and graduated from the Waterford School, to create a blog called “Aura-You-There?” on the Spaces app (spaces.do).
“I’m passionate about discussing this topic,” she said from her home in Arlington, Virginia. “I’ve lost two jobs because of my seizures due to time I had to take off, and I’ve found the best way for me to speak to this is through my writing.”
She recently wrote a blog on Spaces called “Blink.” It’s a wonderful article discussing what it’s like to experience this nightmare, particularly if it happens in public.
“There is such a negative connotation to epilepsy,” she said. “We don’t want to ‘advertise’ it, or talk about it openly. When it happens around others, we ask ‘did they notice it – do they think we’re stupid now?’ It is so stressful beyond just the physical exhaustion and toll that it takes.”
By definition, epilepsy is marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain. As Sarah wrote in “Blink,” seizures are distinguished into two types.
“First are the convulsive (grand mal) seizures. The second kind are called non-convulsive (absent) seizures. Absent seizures are infinitely harder to explain because they can’t be seen.” She has had both. There are no definitive triggers for the seizures, though lack of sleep, stress and either not enough or too much sugar in a person’s diet could be a contributing factor. Whatever the cause, for family or friends, witnessing a seizure for the first time is very traumatic.
“It's a very scary experience for a parent to watch your child go through that and not know how to help,” said Sarah’s mother, Sharlene Wells. “I learned quickly how to catch her (if I was lucky enough to be around when it happened), hold her head, lay her on her side, and wait for the seizure to stop. It's like a full ‘reboot.’ For the last 10-plus years, she has bravely tried to live life to its fullest despite the ever-present fear of not knowing when another seizure will happen.”
Sarah’s seizures don’t follow regular patterns in terms of severity or regularity. She does have a calendar to track them. Some of the grand mals are a bit more severe now when they occur. They can leave her confused, as she wrote in “Blink.”
“Imagine that you blinked and when you checked your phone, two hours have passed,” she wrote. “You go to the bathroom to get ready for bed, but when you look in the mirror with a toothbrush hanging out of your mouth, a trickle of blood is trailing from your ear. You brush it off as meaning nothing, but in the morning bruises have blossomed on your hips and knees. A person who’s never had a seizure would panic. I usually groan and say, ‘Dammit.’”
Lots of life events we take for granted take a back seat for those with epilepsy. Sarah does not have a driver’s license, instead maneuvering around the challenges of the nation’s capital on public transportation. But she hasn’t let it stop her from pursuing her dreams, like those two years of rugby at BYU (“she explained to me that her epilepsy was not the same as a concussion, so therefore she could play,” Sharlene remembers her daughter telling her), or earning that Masters degree in Ireland.
“I used to worry about freaking out strangers if I have a seizure,” she said. “But I have faith in my fellow man – that someone will be there to help me, like happened once when I was in Chicago. You have to be ready to adapt when you have epilepsy. I live by myself right now because I prefer to be alone, even though I know it’s a big stresser for my Mom. I’ve studied what to do in the case of a seizure and share that with friends so they have an awareness of how to help.”
Through her blog, she wants to raise awareness of “something that is not as uncommon as you may think. One in 26 people will have some sort of seizure in their lifetime – and it may not be epilepsy. I want people to share their stories, to learn how to adjust their schedules if necessary, to do a better job of finding things they are limited to in a realistic, responsible way, but still enjoy proactive, good fulfilling lives. Sharing with one another can help do that.”
“Blink” is very well worth reading. Sarah pours her heart and soul into her words, knowing the challenges that those with epilepsy face, but never losing sight of the blessings she, and all of us, enjoy in life.
“The brain is beautiful,” she writes. “It turns electricity and tissue into thoughts and personality; it connects with every part of our body in a fascinating puzzle; it learns and adapts like no other organ has the capacity to; it stores decades of memories and stories and emotions. Emotions like fear.
“But that beauty, with its complexity, comes at the cost of fragility. The same electricity that creates thought can malfunction and send the entire body to the floor in convulsions and spasms. Those malfunctions can damage those memories held safe in the brain. Temporary or permanent, the damage is there. Those malfunctions happen in a fraction of a second – in the blink of an eye.
“Glad to see that you’re still here.” λ