An accident in 2003 left Shane Baker with brain damage and blindness. He also developed epilepsy and says the disease was the most difficult to come to terms with. (Nina Grossman/News Staff)

Living with epilepsy has mental, emotional impacts says Victoria man

Shane Baker shares his story during annual Purple Month campaign

Shane Baker was left blind, brain damaged, fractured and in need of facial and skull reconstruction after falling about 16 feet from the third level of the Yates Street Parkade in downtown Victoria in 2003.

Baker struggled with alcoholism at the time, and woke up from the accident with no memory of the fall. Recovery would take years, and he would have to learn how to navigate the world with almost no vision.

But he says the biggest impact the fall had on his life was a diagnosis that came years later, when doctors told him he had epilepsy.

“About a year in, things started happening. I had quite a bit of anxiety and PTSD [post-traumatic stress disorder] and so I think I developed a bit of a panic disorder,” he recalled. “The seizures were brought on by the panic attacks.”

Baker believes he has trauma-rooted seizures, which are unusual and particularly hard to diagnose – he wasn’t diagnosed with epilepsy until 2005.

But epilepsy is an umbrella term for the various types of seizure disorders that exist. In practical terms, it’s a disease of the brain that causes brief, uncontrolled surges of electrical activity that manifests as a seizure.

And seizures themselves can range. From ‘tonic clonic seizures’ that cause stiffening and jerking, to ‘focal dyscognitive seizures’ which look different on each person but can appear as a person staring, smacking their lips or unable to communicate.

There are also ‘absence seizures,’ which are brief and can appear as a blank or vacant look on a person’s face.

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“Seizures frightened me and the diagnosis freaked me out, to be honest,” Baker said. “It was a lot for me to handle, not to mention understand what was happening in those moments that I was having seizures.”

At the beginning, Baker’s seizures were happening every one or two months, but eventually progressed to two or three times a week.

“For some reason, psychologically, [seizures] are…exhausting,” he said, adding that he suffers from “postictal anticipatory anxiety:” a feeling of panic and anxiety that follows most of his seizures.

Baker said his thoughts will race: “What did I do to cause the last one? And when is the next one going to be? Who is going to be around me? Who’s going to watch?”

His seizures are brief, but each one has a lasting impact.

“Your body hurts, your brain isn’t running normal,” he said. “The physical part you can deal with, it’s all the emotional and spiritual and mental things that are exhausting for me.”

Epilepsy and blindness brought Baker to isolation for years. He said things started to change when he reached out to HeadWay, the Victoria Epilepsy & Parkinson’s Centre, and was connected to behavioural therapy and a neurologist.

Soon he was leaving his home, going on walks or going to the swimming pool. He was cooking healthy food and looking for opportunities to volunteer.

Now, Baker is an Indigenous Studies student at Camosun College and volunteers with Indigenous youth. His seizures are far less frequent.

He hopes the Purple Month campaign – promoting epilepsy awareness – will help him and others who live with epilepsy navigate the world more comfortably.

“I think because there’s a lot of fear and misunderstanding…about seizures,” he said. “There’s so many emotional and psychological [impacts] that go along with epilepsy. Like mental health issues. I think having more education and awareness on epilepsy and seizures is important.”

HeadWay Victoria Epilepsy and Parkinson’s Centre Society offers consultations, workshops, information sessions and patient care for individuals, families and caretakers impacted by epilepsy.

For more information and resources, visit vepc.bc.ca.

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nina.grossman@blackpress.ca

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