For additional information about epilepsy, including local support group meetings, visit the Epilepsy Foundation Northwest website at http://www.epilepsynw.org. To learn about national advocacy efforts, visit the Epilepsy Advocate website at http://epilepsyadvocate.com.
For more than 40 years, John Langolf kept a secret.
As a teen, he kept it from his parents. As an adult, he hid it from his then-girlfriend, and now wife, Arlene. He never told teachers or employers.
He worried people would judge him, that he would lose his job. He thought his manhood would be questioned. He was ashamed.
His secret: John has epilepsy.
“I was afraid if that leaked out that I wouldn’t be able to provide for my family,” John said. “There’s still a very, very big stigma about epilepsy, unfortunately.”
Epilepsy is defined as more than two unprovoked, recurrent seizures. Seizures are the result of abnormal surges in electrical signals inside the brain.
John, 70, is one of the approximately 3 million Americans living with the neurological condition. Each year, 200,000 people are diagnosed with epilepsy but that number is expected to rise as the population ages, according to the Epilepsy Foundation.
John was diagnosed when he was 23 years old. He had his first seizure, that he’s aware of, when he was 17.
He was attending a National Guard camp and woke up one morning confused. He got in a truck and drove five hours. When he arrived at his destination he was still confused and couldn’t remember anything, including the drive.
John continued to have seizures in his sleep for many years until finally he went to see a doctor and was diagnosed with epilepsy. At the time, he was a student attending a university, so it wasn’t difficult to keep the secret from his parents, who lived in Wyoming, or his friends.
John would wake up in the morning and evaluate how he felt to determine whether he’d had a seizure in his sleep. He’d clear his head with a shower and head off to school or work. He managed to do well in both, even his job in construction, and kept his secret from his co-workers.
John also hid his condition from Arlene. Much of their relationship was over long distances, which made it easy to keep Arlene in the dark. But an accident one night made keeping the secret impossible.
John cut himself on a saw and needed to go to the emergency department. Arlene was with John when he told the physician the medications he was taking. Arlene, who had worked in the medical field, recognized the drugs. When she questioned John, he refused to talk about his epilepsy.
Several years passed, and Arlene noticed John growing more and more forgetful. Then one night in 2000, John had a grand mal seizure that lasted 20 minutes.
“It was the first one I had experienced, and it scared me to death,” Arlene said.
After that, John’s seizures became more frequent. He went from having occasional episodes to having seizures daily, then twice a day, then three times a day.
He couldn’t work. He lost his driver’s license. And he stopped leaving the house.
“We were virtual prisoners in our home for about four years,” Arlene said.
Despite the increase in seizures, John continued to be untruthful with his doctors about the severity of his condition.
“I had a lot of confidence in the doctor, and I just assumed the meds he prescribed would completely make the seizures go away and I wouldn’t have to worry about it,” John said.
Finally, Arlene reached her breaking point in 2005. She went with John to the doctor’s office and told the physician everything.
That doctor’s appointment was life-changing. The physician altered John’s medications, which
stopped the seizures and have kept him seizure-free ever since.
After one year without seizures, John was able to get his driver’s license back. To celebrate, he and Arlene purchased a motor home and left their Vancouver home for an extended trip to Mexico.
Every year since, the Langolfs have taken trips to different parts of the country and Mexico to celebrate their independence. During their travels, John and Arlene regularly speak out about epilepsy and encourage people to seek help, ask questions and not be ashamed.
“The biggest mistake people with epilepsy make is trying to hide it,” Arlene said.
“The knowledge we’ve gained by being educated (about epilepsy) has added so much to our lives,” she added. “The thought of keeping it a secret is repulsive to us now.”
Marissa Harshman: http://twitter.com/col_health; http://facebook.com/reporterharshman; marissa.harshman@columbian.com; 360-735-4546.
