What It’s Really Like to Have Epilepsy
Key takeaways:
Tamela “Tam” Taylor was diagnosed with epilepsy 38 years ago after a severe head injury.
Epilepsy is a neurological disorder that causes recurring seizures.
Despite her diagnosis, Tam has lived a full, happy life and has learned to appreciate the little things.
In 1982, Tam Taylor was driving her truck 70 mph down a long stretch of highway in Tonopah, Nevada, when the front right wheel fell off, causing her to careen off the road. It changed her life in a second.
“I went out through the windshield,” she says. Her 4-year-old son did, too. But miraculously, he survived the ordeal with only a case of road rash to show for it.
After the car went off the road, the next thing Tam knew was that she was in a helicopter being transported to the hospital. When she arrived, doctors rushed her into surgery for her back and head injuries.
“It took three layers of stitches to hold my [spine] in,” she says. “I’ve got two rods holding my neck up and a big scar on the back of my right head.”
Tam Taylor is pictured in a headshot. (Photo by © Kayla James)
Three years after the accident, Tam had recovered well from her injuries. She had a new love in her life — Keith, the guitarist of the band she sang in, who she’s now been married to for 34 years — and a new baby. She thought the worst was behind her.
Then, one day when she was changing her 6-month-old daughter’s diaper and chatting with her sister and mom, something strange happened.
“I turned and looked at my mom and [said], ‘What in the hell has cottage cheese got to do with this?’” Tam says. No one had said anything about cottage cheese, it turned out. And when Tam realized her mother was staring at her strangely, she knew something must be very wrong.
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That was just the beginning of a string of bizarre episodes.
“I woke my children up at 3 o’clock in the morning once, put an onion in the microwave and said, ‘Breakfast is ready,’” she says, laughing.
Then, she started forgetting the lyrics to songs while she was on stage. She made an appointment to see her doctor. And she tried to explain her weird symptoms.
“It’s like I’m in two places at once,” she remembers saying. “It’s like déjà vu, but not déjà vu.”
The episodes would feel like hours to Tam, but in reality she would only be in a dissociative state for around 3 to 5 minutes. After running a few tests, her doctor offered a diagnosis: epilepsy.
What is epilepsy?
According to the Epilepsy Foundation, epilepsy is the fourth most common neurological disorder in the U.S., affecting 1 in 26 people. It is marked by recurring seizures that are caused by surges of electrical activity in the brain.
Most people think of an epileptic seizure in terms of the uncontrollable muscle spasms that characterize a grand mal seizure. But there are actually many different types of seizures. Petit mal seizures, or absence seizures, are brief lapses of consciousness during which a person may stare blankly into space. That’s the type of seizures that Tam most often experiences.
Epilepsy can be caused by genetics or a traumatic brain injury, like the one Tam survived during her car accident. After the accident, Tam’s brain scans revealed there was scar tissue present on the left side of her brain, which doctors think is the root cause of her epilepsy.
Learning to live with epilepsy
To get her seizures under control, Tam’s doctor immediately prescribed her Depakote, which she took for 3 years. Unfortunately, Tam says, it didn’t do much to help her seizures, and she gained 110 pounds while taking it.
She tried a few different medications and finally found the magic bullet in 900 mg a day of Dilantin. Once the Dilantin started working and her seizures became less and less frequent, Tam was able to get her driver’s license back and lose the weight she had gained.
“I don’t know how many years [it’s been],” she says. “But, as time has progressed, I’ve gotten better.”
She’s now down to just 300 mg of Dilantin a day and has only one or two seizures every 6 months. Now that she’s been living with epilepsy for so long, she says, she can feel when a seizure is coming on.
“It’s almost like intuition, kind of, you know?” she says, adding that she lets her husband know so that he can hold her steady through the seizure. In that way, “we’re learning how to keep some control over it.”
‘You’ve got to enjoy what you got’
Despite her epilepsy diagnosis and other long-term injuries stemming from her car accident, Tam has lived a wonderfully full life. She’s traveled with her husband and band (once opening for Eddie Money), bred and cared for wolf-hybrid dogs, and enjoyed time with her family.
Today, Tam lives near Akron, Ohio, and uses a motorized wheelchair to get around. She’s preparing for a hip surgery and talks good-naturedly about her health issues. She chalks that up to her glass-half-full perspective.
“You learn to appreciate just getting by a day without incident,” she says. “I mean, I’m 66 years old. You know, come on. You’ve got to enjoy what you got.”
And in Tam’s view, she has a lot: a loving family, a lot of joy, and her very first great-grandchild on the way.
Reminiscing about the car accident that changed her life forever, Tam says she feels lucky to have walked away from it. “It could have been worse, right?” she laughs. “I’m really glad I’m still alive.”
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