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Looking to inspire others with seizures

Sonny Chase sits in the center, surrounded by his family including, clockwise from top left, Jared, Dawn, Kelsey, Kaleigh and Riley. SUBMITTED PHOTO

To say that 2011 was a game changer for Sonny Chase would be an understatement. In fact, it was a bigger change than he could have imagined – a life changer.

Born premature, Chase has spent time around the hospital since day one. At about 1 year, he developed mesial temporal sclerosis, where he had a fever of 103 degrees. Since then, he’s been experiencing seizures.

In kindergarten, “my teacher said I was daydreaming. Well, I believe that was the first signs of it.”    

At the age of 8, he went on medication and has been on it since.

For years he worked to regulate his medication. Though it helped, he still averaged three to four seizures a month.

According to the Minnesota Epilepsy Foundation, 1 in 26 Minnesotans have epilepsy. For most, it starts either before age 10 or after age 55.

Chase is one of those statistics, but he’s also another statistic – one that has been given a new lease on life, and he’s happy to share his story, hoping to inspire others and give them hope.

“I have to do something because I was given this gift,” he said. “Forty-four years of that stuff and you finally get out of it. Some people are devastated after two years. This should pick them up.”

A start of the end

Chase and his wife, Dawn, dated during high school from 1984 to ’86, until he said she thought it should get serious, so he broke it off, he said with a laugh. The two went their separate ways and discovered life without each other.

They found their way back to each other though, and in September of 2000, Chase moved to Wisconsin to be with Dawn and her three children. It was also about that time, at the age of 34 years old, he got his driver’s license for the first time in his life.

“It was one of the biggest things to happen for me,” he said.

He got a job in Wisconsin and soon after he started, he got the flu. He couldn’t keep anything down – including his medication for seizures.

Not feeling right, but not wanting to miss work at his new job, he got in the car and headed for work. He never made it.

About a mile or two into the drive, he had a seizure and blacked out. His vehicle smashed into a truck, causing his vehicle to spin around in the road before coming to a stop. When he came to, the hood of his car was vertical in front of his windshield.

He said he came to and his first thought was “I hope this is a nightmare” so that he could wake up and it wouldn’t have happened. Unfortunately, it was no dream.

After that, he and his wife decided that he would be a stay-at-home dad, not because he chose to but because he had to. He was no longer able to provide for his family.

“That was the biggest turn around in my life,” he said. “I felt like I had lost everything. My self-dignity went down the drain.”

With the wedding scheduled for February of 2001, the couple found out in January that Dawn was pregnant. That caused more stress for Chase, which meant more seizures.

Chase said he started to feel depressed, though it was a slow process, so no one really noticed even though he felt it.

The Chases got married in February as planned, and Dawn gave birth to a baby girl later that year.

“She’s the one who helped me keep my sanity,” he said of his daughter, Riley.

In 2003, the family of six moved to Detroit Lakes for Dawn’s work. She serves as a district manager of Payless Shoe Source.

Finally getting help

In 2011, Chase said his “seizures were out of control.” He went to specialists in Fargo, hoping for some answers but found none. They all tried various medications and doses, but nothing stopped his seizures.

He saw six different neurologists, but none helped. He decided to make a trip to Blaine, where doctors would again try to regulate his meds. Instead though, the doctor there referred him to the doctor that would change his life.

The doctor told him, “I will never be able to better your life, but I know who possibly could.” Chase said that was the first time he felt a doctor was honest with him and admitted they just didn’t know what to do for him anymore.

He was referred to Dr. Patricia Penovich, a neurologist specializing in treating conditions affecting the nervous system like epilepsy and Parkinson’s disease. Chase said what’s ironic about that is he had seen her one time in 1994 but quit going because his insurance didn’t cover an EEG due to his pre-existing condition. Now, he was back at her door in 2011.

He went through a battery of tests to determine if he was a good candidate for surgery. A small number of people with seizures qualify, but after all the tests, Chase was chosen as one of the few.

He and his wife both agreed it was something he needed to go for.

March 2, 2011, he was scheduled for surgery. He was all prepped and one last test that morning showed that his iron levels were too low for surgery and it was postponed.

He tried everything to get his iron level up but there was no change. The doctor agreed to go ahead with the surgery, and Chase was once again prepped for surgery – this time is was April 2.

Ten hours later, he had a flexible sensor implanted in his head to detect where the seizures were originating. For the next week, the doctor lowered Chase’s medications, trying to induce a seizure.

“I gave them three seizures that night,” he said. “I was excited, believe it or not.”

They were ready to perform surgery on his brain. They removed the hippocampus on his left temporal lobe, and he hasn’t had a seizure since.

Finding the words

About a year after he was fully recovered from his surgery, Chase had to work with a speech therapist because he had lost some abilities. His thinking was slow and his short-term memory was sketchy.

 At the first session, the therapist gave him a letter and then gave him one minute to name as many words he could think of that started with that letter. He thought of only one word in one minute.

He said that was the most frustrating part of the entire process.

This past Christmas, he was able to say “wreath” for the first time.

“It’s a word that came back, and I was so proud,” he said.

In September of 2013, he was back at a check-up with Penovich.

“I was in there whining about all this frustrating stuff,” he said.

She asked him if he was done whining, and when he said yes, she asked if he was interested in being able to drive again. He said he felt like he could “start a new life” with the ability to drive himself again.

“I didn’t know whether to cry or what. I was in shock.”

His wife, on the other hand, was scared, knowing what had happened last time he drove, he said.

He passed the written portion of the driving test, and when he went in for the driving portion, he said his daughter told him not to forget to pick her up after school that day. Talk about pressure to pass.

“For the first time in my life, I was able to go pick up my little girl (in the car),” he said.

Spreading the news

Chase said he feels that since he was given this gift, he has to share it. He gave a speech for the North Dakota Epilepsy Foundation and has had a short story he wrote about his experience published in the Minnesota Epilepsy Foundation magazine.

He has also been asked to speak at more epilepsy foundation sponsored functions and possibly talk to patients considering having the surgery he did.

“People relate to you,” he said. “If I do it and have success … it gives people hope.”

He is also spending his down time writing a book on his experience.

Chase works full time at Team Industries, and said he loves the company and his co-workers. He also loves just being able to work at a full-time job.

He is still on medication, but it’s half the amount that he was on before his surgery. And most importantly, he’s seizure free.

On Jan. 6 of this year, he went for another check-up. He hadn’t seen Penovich for a year and a half, and when she walked in, he told her, “I will be in charge.”

“She liked that,” he said with a laugh.

He handed her the story he had published in the Epilepsy Foundation magazine. As she read through it, he said he saw a tear come to her eye, so he gave her a hug.

“I hope she sees what she and the epilepsy group have done for me,” he said. “She is my hero.”

He said that anyone on medications that just aren’t working, go see an epileptologist, a doctor who specializes in epilepsy.

“That’s all they do,” he said, “and they’re wonderful people, but they’re also to the point.”

Nowadays, Dawn still travels for her work, but Chase is able to go to work, take the kids to school and not have to worry about feeling a seizure come on. Jared is in high school, Kelsey is a teacher in Fargo, Kaleigh is attending college in Chicago, and Riley is in the seventh grade.

“They are wonderful kids. I couldn’t ask for more,” he said.

Before his successful surgery, Chase said he didn’t like speaking in front of people. Now, he’s happy to talk about his surgery with anyone, regardless of the size of the crowd.

“I blabber a lot. I never used to. I’m making up for lost time,” he said with a laugh.

Follow Pippi Mayfield on Twitter at @PippiMayfield.