She sat very still and un-lifelike in the old paisley chair in the living room. She heard a voice but could not respond. “Beth, Beth….” Why couldn’t she say anything? She just stared at the four walls. Her mother became frantic. Beth saw her Mom grab the phone and yell desperately, “Frank, there is something wrong with Beth, you have to come home immediately!” Her mother hung up the phone and came toward her. She waved her hands in front of Beth’s face, but Beth didn’t flinch. She couldn’t. Finally, after what seemed an eternity, Beth turned her head toward her mother and began to speak.
“Mom, what’s wrong with me?” she asked as the tears slid down her cheek.
“I don’t know honey; we’re going to the doctor as soon as your Daddy gets home.”
Her mother’s voice was nervous and anything but reassuring. It was around four in the afternoon; Beth had been home for about an hour. The spell only lasted for five minutes, but it seemed an eternity. What was wrong with her? This had never happened before. A half an hour later her father came through the door. He looked at Beth and then at his wife and wondered what happened. Beth’s Mom, her jet black hair tied up severely in a bun went to greet him. She whispered to him so Beth couldn’t understand. Why was she doing that?
They waited for what seemed like forever when the doctor stuck his head out and his thick German accent said, “Come in, please.”
He began talking to Beth’s Mom to ask her what happened. It seemed a lot less serious now that several hours had gone by, but Mrs. Herman told the story.
“For the longest time, she didn’t move her eyes, she didn’t talk, it’s like she didn’t hear me. What is it?”
The doctor took his hand and cupped his chin while answering, “Aha”, or “Hmm” at every question he posed to Mrs. Herman. Beth looked exasperated. Doctors always made funny noises when they didn’t know what was going on. He finally stopped asking questions and spoke.
“I can’t be sure, we’ll have to do some tests, but it sounds like she had a very mild epileptic seizure. It isn’t serious, and can be treated with medication. But first I’m going to make an appointment at John Hopkins to do an EEG.
“What is an EEG?” Mrs. Herman asked frantically.
“It’s an electroencephalogram, it measures abnormal brain activity. Electrodes are attached all over the head while a machine measures the waves. It’s almost the same as when they record earthquakes. No need to worry, Beth, it’s painless.
Beth was freaking out. What on earth was wrong with her? Epilepsy? Didn’t that mean she was mentally retarded or something? It seemed she had heard that before. She was a straight A student, they must be mistaken.
Two weeks later, Beth was at the hospital having the brain waves tested. She had to stay awake all night so she could fall asleep for the test. She was having a ‘sleeping EEG’. She had only the one episode so the doctors originally thought it was probably a one- time thing. But when the results came back, that was not the case. Her doctor had diagnosed her correctly. She had petit mal epilepsy and would be treated with Dilantin and Phenobarbital. The doctor said this could disappear as easily as it came or she could have it for life. Beth tried not to think about it, but went about things as normally as she could. She didn’t know her whole life was about to change.
One day when she came home from school, her father was already home. Usually, he wouldn’t have been home for three more hours. She looked at him with a question mark, and said,
“Dad, what are you doing home so early?”
“Sit down, Beth, we’re going to have a family meeting.” He mumbled.
She sat on the couch next to her big sister, Sandy. She was holding her baby Jami on her lap. Sandy has just moved back in with the family after separating from her husband, Jim. The news her Dad was going to give the family would make an impact on everyone.
“I may as well say is straight out”, said Herb. “They’re moving my job to the desert in Arizona and we have to leave Maryland.”
Mom spoke first, “What on earth are you talking about?! I’m not moving to any god forsaken desert, this is my home, my brothers are here, I was raised here, every---“
Herb held up his hand. “Look, I’m not thrilled about it either, but they said the base has encroached into the housing areas and there is too much noise. We either move, or I’m out of a job…that’s the bottom line. I didn’t want to say anything until this was definite; we did put up a fight, but the union lost this one. So, in June we’re moving to Yuma. I want to go see my mother and sister in New York first before we leave. I’ll probably never see them again.”
Beth sat flabbergasted. First, the epilepsy thing. Now she was going to a whole new neighborhood, and where? In some desert. Beth didn’t know anything about the desert, except it was unbearably hot. She would have to make all new friends. A new school, her whole life was ruined!
But life had to go on, so when school got out in June, her family immediately made plans to go first to New York, to see her grandmother, aunt , uncle and cousins. Her father had a friend who had a friend in Kansas, so instead of driving the straight 2,000 miles, they would stop in Kansas for the weekend.
So school ended, the family got themselves together and they left their long-lived in Maryland home. It was an interesting family…Mom, Dad, Beth, Sandy and baby Jami. Baby Jami was as good as gold the whole way. Not so much for Mrs. Herman. She hated traveling, and first going through the hell of New York, and having to get up every day to travel for two weeks wore on her nerves. Every day she would look at her husband pleadingly, and say, “Please, Herb, let’s turn back!”
After two arduous weeks of going through new cities, eating in restaurants, sleeping in Holiday Inns, and dealing with a car that no long wanted to travel, they made it to Arizona. The last leg of their trip they had to drive at night, because the car kept overheating. The radiator was shot and would be the first thing they’d have to replace once they got settled. The temperature was in the low 100s and for a ‘native’ was quite pleasant. But the Hermans’ weren’t native, and 100 degree temperatures were anything but pleasant. It was a dry heat though, so tolerable, but still not pleasant.
The family finally got settled in their new home with the assistance of their Hispanic sponsor, Mr. Rivera. He found them a house and got the Hermans settle. They still had the summer ahead of them before Beth had to start her new school, but it went so fast. Plus, in Arizona, they started in August, not September like back in Maryland.
Beth went to the high school several weeks before school began to register. Things were so different! They actually had to buy their books. She looked around at all the other people and noticed many of them were speaking Spanish. She knew Yuma was on the Mexican border, it was just so strange to actually hear it. A Hispanic girl with long brown here approached her. “Coma esta?” Beth just looked at her blankly and shrugged her shoulders. The girl looked shock and said, “No hablar espanol?!” Beth nodded and for some reason felt ashamed. Later she realized the girl looked at her dark skin and hair and thought Beth was Hispanic. Beth was getting a little culture shock.
She was talking to the counselor to select her sophomore classes when the guidance counselor just assumed she wanted Driver’s Ed. After all, she was a sophomore, that’s what all kids looked, being able to drive, right? She told the counselor she could not take Driver’s Ed because she could never drive.
He looked confused and said, “May I ask why?” Beth was so dreading this. She didn’t want people knowing about her ‘problem’, but she had to tell him.
“Because I have….she hesitated and with a bad taste in her mouth said, “I have epilepsy.”
“Oh, I am sorry, so what would you like in place of that. How about one semester of Home Ec?”
Beth wasn’t crazy about Home Economics, but it was better than anything else they had.
“Ok, sure, that will be fine.”
“Your second semester will be Health”
“Ok, thank you, Mr. Goodman.”
Beth got up to leave and shook Mr. Goodman’s hand. He welcomed her to the school and wished her all the best. She thanked him and went to go purchase her books. After that she walked back home to talk to her sister and her parents. She already missed Maryland, these people treated her nicely; even the ones that couldn’t speak English, but everything was so strange!
Time passed by swiftly, and soon Beth started her sophomore year. It was much easier than she expected, the people out West were a little behind the people in Maryland. Other than Geometry (which she hated), it was like repeating some classes. Especially her French class. She was taking her second year of French, but when she went to the class it was like she was still in the middle of the first year!
But the people were friendly and a bit more relaxed than the fast paced East coast. Her seizures had seemed to all but come to a halt, so she felt a little better. She knew she should meet other people so decided to join Chess club. She always loved to play, but had no one but her father or sister to ever play. Everyone proclaimed it ‘too hard’, or ‘you have to be a real geek for that’. Nonsense, she was neither one.
Most of the people in the Chess Club were boys, there was only one other girl, Norma, who was her neighbor and her best friend. Norma joined probably because she did. So Beth enjoyed her new school and friends and her epilepsy had all but disappeared…..or so she thought.
One day in Home Ec, Ms. Graham was showing the class how to pin a pattern. She asked Beth to help her by handing her the straight pins. Normally Beth would have been more than happy, but something was terribly wrong, her heart was pounding so hard, Beth thought it was coming out of her chest, and Mrs. Graham didn’t give her a chance to explain she wasn’t feeling well. So she walked around the pattern with the teacher, but her head was pounding, and she was sweating profusely, but no one noticed. That’s when it happened.
Beth woke up on the floor and the class was leaving and the new class was coming in. What on earth! She felt terrible. People were staring at her on the cold, hard floor, and asking her questions. She couldn’t answer…her head was beating, she had bitten her tongue badly, and there was blood coming out of her mouth. She was so embarrassed! A young woman was on the floor with her trying to get her attention. “Beth, Beth, I’m a nurse, you had a grand mal seizure”. A what??? She thought the only kind of epilepsy she had was the staring spells. This wasn’t a part of it! Why! Why! Why me!!! She had never been so embarrassed in her life! No one would ever want anything to do with her again she was sure of it.
After she regained full consciousness, the nurse led her back to the nurse’s station where her parents were called to come and get her. Beth just sat rigid and said nothing. The nurse was talking but she really didn’t want to listen. The nurse gave her a piece of paper and said the next day she would have to get all of her teachers to sign it. They all had to know about her problem. Beth wanted this albatross around her neck kept secret, now everyone would know. Heck, they probably already did. She could imagine all the people talking about ‘the poor new girl’. She could barely stand it.
The days that followed were pretty uneventful, no one ever mentioned the seizure, Beth was sure they were just being polite. She did have to tell all her teachers about her problem now. She took the paper to each teacher to sign off. Mr. Black, the Science teacher and chess coordinator seemed very concerned. She was grateful for his concern but wished he would just drop the subject. He told her if she ever felt ‘ill’, to tell him immediately and he was there for her. That was nice, but she didn’t want this extra burden, she just wanted to be like everyone else.
Soon, tryouts began for the Chess team. She was so happy, she had finally made it! She felt a little sorry, because Norma didn’t, and she would be the only female at all the chess meets. She practiced with her Chess club friends and the fateful day finally arrived. They were to play their cross town rivals, the Kofa Kings.
She sat across from the boy and had her hand on the buzzer. She wasn’t feeling right again, she was having those same palpitations that she had when she was in Home Ec. This couldn’t be happening again, not now, not at the tournament! Not thinking clearly, she made an errant move and lost her queen. Her opponent silently pointed it out to her and took her queen. All she could remember was that somber look on his face when she finally regained consciousness. She had passed out again. They had lost the tournament, and she felt it was her fault. This was it. She would never go back to Chess Club again.
Several weeks passed when Mr. Black finally approached her.
“Beth, you haven’t been at the meetings lately, is everything okay?”
She couldn’t believe he could ask such a stupid question. “No, it isn’t okay, I can never go back there, after what I did?!”
Mr. Black put his hand on her should and said, “Beth, you did nothing, and all of the other members want you to come back. It’s no shame to have epilepsy. They all understand and asked me to speak on their behalf. I thought you might be feeling this way. I know, Beth, it’s hard, but it isn’t your fault, and you have to live your life. You can’t let this thing stand in your way.”
Beth listened to him and decided maybe she should give it another shot. She couldn’t avoid people because of her epilepsy. People would just have to understand and accept her for who she was and if they couldn’t accept the epilepsy, oh well. But when she thought more about it, not one person talked about her epilepsy or even bought it up.
She went back to the chess club, and everyone welcomed her with open arms. No one mentioned her epilepsy or what had happened. They just told her they were glad she was feeling better and now they would have more competition! Beth was glad she had come back, she couldn’t keep her head in the sand just because she had epilepsy. Others had worse handicaps than she, and she knew it. She had what is known as an ‘invisible’ handicap.
Beth graduated a few years later with honors. She was glad her family had moved here. Yes, the seizures still bothered her, but they didn’t DEFINE her. It was a part of who she was and was something she would have to deal with the rest of her life, but she knew she could get through it. She could do anything she put her mind to!
Author’s Note: This is an autobiography. It is about the challenges I faced when first learning about epilepsy. I had the disorder for 30 more years. It wasn’t found until later that my seizures were brought on by my menstrual cycle. This happens to many women. Epilepsy has made great strides since I was a teenager. I still have to take medication but I am 100% controlled now. The medications of today are much superior to old Dilantin of years gone by. That medicine has been found to do more harm than good, but in the 70s, it was all that existed.
