Sunday, May 31, 2009

Author tells her own story: Living with seizures

On Halloween 1997, Beki Propst couldn’t remember earning a degree from Kearney State College, running Marine Corps marathons, working for a senator or being a broadcast journalist.
“It was pitch dark and I was wondering why I was standing up beside my bed,” Propst told a group of listeners at Lexington Public Library last Thursday evening.

Concerned, she contacted her doctor, who told her to increase the medication she was taking. From that day 11 years ago, the 58-year-old Propst began to collect memories.

Her story has been featured in the Sunday Denver Post, in addition to several other newspapers from the Midwest to Florida and has recently been a guest of Diane Sawyer on Good Morning America.

“In late 1997, a neurologist told me I had epilepsy.”

Propst revealed said she had been having grand mal seizures once a month for over seven years.

“Seizure occurs when the brain is sending signals very fast, kind of like a lightning storm in the brain,” Propst explained. “There are grand mal seizures and complex partial seizures, that can be as mild a the brain blanking out for a few seconds to a couple of minutes.”

Those seizures are what took away the first 47 years of Propst’s life.

Some of her past she has been able to reclaim through transcripts and photo albums, although she doesn’t remember living it.

“My closets were full of surprises,” Propst said. There were skis, athletic equipment, a camera and a strange box full of items she had no knowledge.

“I asked my neighbor what it was and he told he it was a sewing kit.”

“I still don’t know what I knew or experienced before my last seizure,” Propst said, “but why worry about it? I didn’t know what I was missing, so how could I miss it?”

Propst did try to figure out her past, however, asking various family members what she did, what she was like.

“It’s difficult to figure out your past by asking someone else,” she said. “They all have a different version of the facts.”

More importantly than her memories, Propst tried to find out everything she could about epilepsy and memory loss. In the late 1990s, the Internet was still in its infancy and there wasn’t a lot of information available.

Epilepsy is the number three neurological disorder behind Alzheimer’s and strokes. Doctors and scientists still don’t know what causes the condition, and a reliable test for epilepsy has yet to be developed.

“Doctors have to rely on observations before they can make a diagnosis,” Propst said.

Epilepsy has a wide variety of causes, and a variety of affects, but in Propst, the seizures destroyed her long-term memory.

She likens her memory loss to a computer whose hard drive has been can still work, but all of the data is gone.

“My first memories are likewise—hazy,” Propst said, comparing her first memories since that Halloween day 11 years ago to the memories most folks have from when they were two or three years old.

As Propst tells her story, questions crop up from the audience, asking her if she had to learn to speak again or drive.

Using three cards as visual aids, Propst showed examples of procedural memory, those automatic things we do each day, like dress ourselves each day; semantic memory, memory that allows us to communicate, to read and write and finally, episodic memory, facts and details of specific events.

Propst took the card with the words Episodic Memory on it and threw it off to the side.

“I didn’t have that,” she said, flatly.

“I couldn’t add or subtract, but remembered how to drive, but had no knowledge what the rules of the road were. I could ride a horse, but not a bike. I had no conception of what role memory played in normalcy.”

After Propst talked a little about her experience as an amnesiac, she addressed the subject of epilepsy.

“There is a stigma surrounding epilepsy—seizures can be frightening,” Propst said, “especially grand mal seizures.

“It’s scary, even for people who know what they’re dealing with. People with a complex partial seizure can appear drunk and disorderly or be overly aggressive and emotional.”

Propst said notables with epilepsy have been Albert Einstein, Chief Justice John Roberts and actor Danny Glover, who had the condition at age 15, but it stopped about the time he was 35.

“No one knows why,” Propst said.

Although Propst has responded well to recent medications, there are those who don’t. She explained there are people who have to take secondary drugs to alleviate the side effects of the drugs that control epileptic seizures.

Over the years, as people have heard Propst’s story of her absent memories, she has been encouraged to write about her experiences. In the beginning, her answer was simply, “I don’t know enough about life or living to write a book.”

But after six years and countless revisions, her book, Absent Memories, was published. She calls it “A bird’s eye view of what I did to survive.”

And summing up her experiences these past 11 years?

“It’s been an amazing adventure,” she concluded.


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