Tom: From Uncontrolled to Seizure-Free

Twenty-four years have passed since Tom’s last seizure.

There was a time when such a span would have seemed just a dream to him. Now, he’s living it.

“I don’t even think about seizures anymore,” he says.

It’s a huge feat considering that for 21 years—from age 9 to age 30—Tom’s absence seizures were uncontrolled by medication. Interruptions to his consciousness could last 20 seconds or more in middle school and high school. Tom grew up knowing that the freedoms other teenagers took for granted weren’t his to share.

Lack of Independence

Tom with Kelley S. Needham, CEO of the Epilepsy Association of Northeast Ohio

Now 54, Tom wasn’t legally allowed to drive until age 30—a reality that impacted his confidence as much as his mobility.

“I wouldn’t ask anybody out because my date would’ve had to drive,” he recalls. “Back then, in the ’80s, that wasn’t going to happen.”

Without wheels, he got used to waiting. Waiting for the bus, waiting on others. Getting anywhere took time. As a college student at Wright State University, visits home meant taking a six-hour Greyhound ride.

“Epilepsy definitely has made me a more patient person,” he says.

When Tom finally got his license, “it was a thrill,” he recalls. “To take those driving lessons and the written test, you feel like you’re on your way to being more independent. It was a weight off my shoulders, a new chapter in my life, freedom.”

Finding His Way

In middle school and high school, when Tom’s friends were playing sports, he sat out. If he ran too much, he got absence seizures that manifested as bouts of dizziness. So he skipped sports, joined the band and found an outlet in drumming.

Side effects from epilepsy drugs such as Phenobarbitol, Tegretol, Neurontin, Dilantin and Depakote also have left their mark. In their wake is a legacy of irritability, blurred vision and tremors. One drug even caused Tom’s gums to swell over his braces (that one didn’t work out).

The Upside

While a lifetime of epilepsy has meant ample sacrifice, it’s also brought peace of mind. Striking the right balance of Depakote and Lamictal was Tom’s golden ticket to seizure-free independence.

Tom at a Cleveland Indians baseball game

“Today I’m content just being me,” says Tom, who’s worked as an administrative professional for 25 years. “I feel blessed to have epilepsy. It opens my eyes to the hardships of other people. It makes me realize that I have much to be thankful for.”

At times, Tom compares himself to others—those who are married, raising kids, climbing the corporate ladder. Wistfully, he wonders what might have been had anticonvulsants not sapped his ambition or his focus. Would he have performed better in school? Could he have found true love? Then he scolds himself for thinking it.

On his best days, Tom finds empowerment, hope and grace in the values his parents instilled in him. He finds joy in longtime friendships, solace in his faith.

He finds the strength to carry on.

“I’m quite content,” he says. “You gotta live your life.”

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Please note: All photos courtesy of Tom.