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Year two with Epilepsy: Relearning how to thrive

When Matthew Young discusses his favorite things – cinematography, live music, brilliant films, skateboarding – he speaks with such passion that you can’t help but share his enthusiasm.

The 23-year-old freelance cinematographer will share interesting details on one topic, which blends into a great story about another topic, which leads to a thought on a third topic. Matthew realizes he does this and apologizes occasionally for his tangents, though there’s no need to do so. It’s a pleasure to hear stories about working at a music festival for a film crew from 6 a.m. to 4 a.m. at the fabled Red Rocks Amphitheatre in Colorado.

Sometimes, though, the older son of Wolves general manager Wendell Young stops in mid-sentence. He’ll look perplexed, as if he cannot summon the word he wants to use, but it’s deeper than that. He’ll forget entirely what he was discussing — and it frustrates him.

It’s one of the moments when Matthew’s epilepsy gets the better of him. He was diagnosed with the condition in the summer of 2013 when, while on vacation with his family in Canada, he suffered two grand mal seizures in a 24-hour period and 40-50 partial-complex seizures over the course of a week.

The Young family didn’t know a lot about epilepsy at the time, but they’ve gotten up to speed in a hurry.

“I’m amazed at how many people we’ve met with family members or close friends who’ve been affected by epilepsy,” said Paula Young, Matthew’s mom. “It’s ‘Oh, my mom…’ or ‘Oh, my sister…’, but it’s great to meet these people who are having wonderfully fulfilling lives because the medication has improved so much over the years.”

To draw even more attention to National Epilepsy Awareness Month — and to tip a cap to the Young family as they deal with Matthew’s condition – the Chicago Wolves and Heidenhain teamed up to design a purple Wendell Young t-shirt that’s being given away to the first 2,500 fans at the Nov. 22 game vs. Iowa.

Matthew’s first 18 months as an epileptic have been laden with highs and lows. His dreams to work all over the world as a cinematographer remain firmly in his grasp — even his desire to work incredibly long hours on nature shoots in the African wild.

And, yet, when he traveled to Kansas for a week in January to work as a production assistant on a short film, he pushed too hard and wound up suffering a partial-complex seizure.

“I was busting my butt, running around doing anything anybody needed,” Matthew said. “I was interested in everything. They had two RED cameras, which I was obsessed with. This is the camera I dreamed about getting – and I actually bought one later in the year. I was just, ‘Oh, my god. I’m working with these cameras. I’m working with professional directors and photography assistants. These guys work on big movies.’ So I was in awe of them and told them, ‘Anything you need, I’m there.’
“We had two hours left to shoot one day with the natural light coming through the windows. There was high stress on set. People were getting sick. I was taking over other people’s work and, basically, my brain started going haywire and I felt like I was about to have a seizure.”

Matthew told his boss, who knew his medical history, and he sat down to take a break. Matthew wound up calling Paula at home in the northwest suburbs and she took copious notes where he explained everything that occurred, though he doesn’t have any memory of the conversation.

When he returned home he visited his neurologist, who determined he ought to switch medications (from Keppra to Oxteller XR) and dosages to suit him better. Matthew reads everything he can find on epilepsy, takes his medication religiously, eats better and finds time to run. He hopes to start running in events soon to raise money for epilepsy research.

“I think he’s handled it really well,” Wendell said. “He’s taken it for what it is. He considers himself lucky that there is medication to control it. Anybody with a condition, you’ve got to be more disciplined.”

“He doesn’t let it get himself down,” Paula said. “We got such great help when it happened. The side effects of the medication aren’t as bad as they used to be. You have to be really grateful.”