by Talia Jager
Under type, Connor had written TC (stands for tonic-clonic). Under length he put 100 seconds. Under aura, he put short. In the notes, he put woke briefly, slept for three hours, woke again with headache, took meds, rested.
I looked to see when my last big seizure was. I counted ten days, before that it had been only three. Out of the entire month, there were only two days with no seizures recorded. If it was an absence seizure, we would just put the number I had and some sort of WNL (within normal limits) after it. If it was weird at all, we would write down what was different.
Connor sat down next to me. “How are you feeling?”
“Better,” I said. “Exhausted.”
He nodded. “It was a long one. I’m exhausted from just watching you,” he teased.
I smiled. “Is it really weird watching it?”
He looked over at me with a strange expression. “What?”
“Well, I’ve never seen one. I experience them, but I don’t remember them at all. What’s it like to watch?”
Color drained from his face. “I don’t know if I could explain it.”
“I used to ask Mom to tell me, I even asked her to videotape it. But, she wouldn’t. She hated even talking about them. She wouldn’t describe to me what happens to me. I watched a video online, but I don’t care what other people do. I’m curious about what I do,” I said.
He ran his hand through his hair. “I don’t know, Teagan. It’s scary. That’s how I’d describe it. You just fall and start shaking. We never know how long it’ll be. We just wait and make sure you don’t hit your head on something. Then it starts to settle down and you totally lose consciousness for a few minutes.”
“Am I awake through the seizure?” I asked.
“I wouldn’t call it awake. Usually your eyes roll back but they’re open. Sometimes they’re closed. If they’re open, when the seizure stops, your eyes will close. You don’t ever respond to anything.”
“Then what?” I asked curiously.
“Usually you wake up for a few seconds. Sometimes you say something; sometimes you’re really confused. But, then you fall asleep for hours.”
“Then I wake up with a horrible headache and I know what happened,” I added. “Would you be willing to videotape it?” I asked.
“Seriously?” he asked. I nodded. “I don’t know. I’ll have to think about that.”
“If I’m safe?”
“I’ll think about it. Why would you want to see that?”
“I want to know what everybody else sees. I am missing that time, like my memory has been erased. It’s weird. I try so hard to remember, but it’s not there. Seeing it might help me understand better,” I tried to explain.
“We’ll see.”
When I got back to my room, I got online with Zander. Had TC seizure today. Not feeling good. I typed.
I waited for his response. Sorry. Big one?
Yeah.
I had one today, too.
Maybe our brains are connected. I put a smiley face in it.
LOL. Maybe. Go get some rest.
I’m going. Hugs. I typed.
Hugs back.
I turned the computer off and got back in bed. I slept through the night.
Chapter Five
Monday came way too fast for my liking. It was time for the whole school to know all about me. I was very jittery; I think that triggered some episodes. I had three before I even left the house. Connor sat me down. “Are you sure you want to do this?”
I nodded. “Yes.”
“You are very out of it this morning.”
“I know.”
“Take some deep breaths,” he instructed me to do as he rubbed my back. We sat there for a few minutes. “Now, we’re going to go together.”
I nodded and gathered up my strength and my courage and got in the car. I didn’t say anything on the way to school. “You okay?” Kate asked turning around to look at me.
I nodded. “Yeah.”
At school, Connor parked and we all got out. We walked towards the school. I saw Maddie and Brad talking. I went over and said hello. “Hi Teagan, how was your weekend?”
“Good, thanks.”
“Who’s the hot guy you’re with?” Maddie asked.
“And who’s the hot girl?” Brad added.
I laughed. “The hot guy is my brother and he’s married to the hot girl.”
“Oh.” Maddie blushed.
“Bummer,” Brad said.
“I’ll see you guys later,” I walked off.
Just as we were entering the building, Mandi ran up. “Hi,” she said out of breath.
“Hey. You remember my brother and sister-in-law.”
“Sure do. How are you?”
“Fine, thanks.”
“We’re heading to the guidance office,” I told her.
“Is it okay if I sit near you during the assembly?” she asked.
“Sure, we’ll be down in front.” I told her opening the door to the office. Mrs. Tavi and Dr. Cramer were waiting for us. We all shook hands. He introduced me to the guests he brought. Both had epilepsy and both were doing things with their lives. It was neat to meet them.
I went to homeroom and then I was to meet up with them in the auditorium. I knew I had one small seizure in homeroom. The teacher was calling names and it was like he skipped all of a sudden. That was four today. It wasn’t letting up.
Mandi and I walked to the auditorium. Maddie caught up to us. “Hey, do you know what this is about?” she asked as we were walking in.
I turned to her. “Yeah, it’s about me.” I didn’t wait to see the expression on her face or what she had to say. I walked to the front and sat down next to Connor. Mandi sat on the other side of me. I thought of Zander and Lainey. Both of them had done this years ago. I knew they were with me in spirit, but I wished they could physically be here with me.
My mind started to wander. What if the kids just started laughing at me? What if they were mortified? What if I had a seizure and they just stood there making jokes? Maybe this wasn’t such a good idea. “Teagan,” Connor said. I looked over at him. “You are going to have a seizure if you don’t stop stressing.” My fingers were gripping the armrest. He took my hand and I relaxed. “Squeeze my hand if you want.” He tried to smile.
The doors in the back of the auditorium closed. Murmuring continued even as the lights dimmed. Mrs. Tavi stood up and took the microphone. “Good morning,” she started. “We have an informational session today with Dr. Cramer. He is here to talk to you all about a serious medical illness.”
Dr. Cramer stood up and took the microphone. “Good morning! Thank you, Mrs. Tavi for inviting me to speak here today. I’m here to talk about epilepsy. How many of you have heard of this disease?” he asked. A good amount of kids raised their hands. “Wonderful! Now, how many of you know a lot about it?” A couple people kept their hands raised including Mrs. McGee.
“Epilepsy is a neurological condition which affects the nervous system. It is a seizure disorder. Epilepsy can be related to a brain injury or hereditary, but most of the time, we can’t find a reason as to why someone has it. Epilepsy is diagnosed usually after a person has at least two seizures that aren’t related to any other medical condition. Now, who knows what a seizure actually is?”
Nobody was raising their hands this time. “A seizure is a sudden surge of electrical activity in the brain. This affects how a person acts or feels for a small amount of time. There are many different types of seizures. We break them up into two groups.
“The first is a generalized seizure. That means it involves both sides of the brain at once. A few of the seizures in that group are absence seizures, myoclonic, tonic-clonic seizures. The second group is called partial seizures. This is where the electrical discharge is located in one part of the brain.
“Examples of different seizures in this group are simple partial seizures and complex partial seizures,” As Dr. Cramer explained, he showed some pictures on a
power point presentation.
“Seizures take on many different forms and can affect people in different ways. A seizure has a beginning, middle, and end. In some seizures, they just start with no warning. In other seizures, people can experience an aura. That can be dizziness, nausea, smelling something weird or having a déjà vu feeling.
“So, what kinds of seizures are there? There is the absence seizure. This is a brief episode of staring. During this kind of seizure, the person is not aware and does not respond. They don’t even know they have one. There is no warning to this type of seizure and when the person comes out of it, they are alert and pick up right where they left off. It might even seem like the person is daydreaming,” he paused to take a drink.
“Then there are myoclonic seizures. These are like brief jerks of a muscle.” He demonstrated with his arm. “Tonic-clonic seizures used to be called grand mal seizures. These are what most people think of when someone says the word ‘seizure’.
“The person drops to the floor, their eyes roll back, their muscles stiffen, and then their whole body starts jerking around. The person might groan. They might turn pale or even blue. They might bite their cheek or tongue. Sometimes they even lose control over their bladder.
“These people are unconscious. They don’t know what is happening to them. The seizure can last a minute or two, sometimes longer. After a few minutes, the person can regain consciousness but is very confused and sleepy. The best thing to do is get them to bed. There they sleep for a few hours. In a partial seizure, the person is conscious.
“Sometimes they will respond to you when you talk to them, but they’re not really there. Some people smell or hear things other people don’t. Some people just twitch a little. As you can see, there are many different types of seizures. I’d like to show you all a video before continuing on. These are teenagers with epilepsy.”
He put the video on and we all watched. There were some murmurs and chuckles when the video actually showed them having a seizure. They showed a few different ones. An absence seizure, a simple partial seizure, a tonic-clonic seizure and even a drop seizure.
Then the kids in the video talked about going through school with these seizures, how their friends reacted, how to help someone having one and how they were going on to college or work after graduation.
When the video was done, Dr. Cramer stood back up. “As you can see these kids live with unknown certainties every day. They go to school every day not knowing if they will have a seizure and if everyone will laugh at them when they do. But, it doesn’t hold them back.
“They are normal kids, with a love for music or reading or learning. They have goals and dreams. I’d like to introduce a couple of young adults who have graduated high school and are now in college, both of them have epilepsy. Please welcome Aubrey and Rick.”
The audience clapped as they got up. “Hi, my name is Aubrey and I have absence seizures.”
“And I’m Rick and I have tonic-clonic seizures.”
“We’re here to talk to you about what it’s like to have epilepsy,” Aubrey said. She went into a little more detail about her type of seizure. How she was treated as a daydreamer in school. Everyone thought she didn’t like school or didn’t pay attention until a doctor noticed it. After an EEG was done, she was diagnosed with epilepsy.
“It was horrible. Here I was at thirteen, being told I had this disorder. That I had to take medication for a really long time. That I wouldn’t be able to drive until I didn’t have a seizure for two years! I was a teenager. I wanted to enjoy life. I wanted to drive. I was depressed and lonely. I was sure I was the only teenager around with it.”
“With the permission of our parents, our doctor introduced us,” Rick said. “I had been diagnosed with tonic-clonic seizures. I would drop on the floor in front of people or by myself and start jerking around. Sometimes I’d drool or pee on myself.” Some kids snickered.
“It isn’t funny when it happens to you. I had no clue it was going on. And imagine how embarrassed you would be if all of a sudden you woke up on the floor with a bunch of your peers staring down at you and all you could smell was urine? Imagine!” The kids were quiet. “I was fifteen and I was sure my life was over.” He went on to explain how he was diagnosed after three big seizures and put on medication.
“We both went on to college. Something we weren’t sure epilepsy would allow us to do. But, we were wrong. I’m studying to be a doctor,” Aubrey said.
“I am studying to be a journalist,” Rick said.
“We’d like to show you how to help someone having a seizure,” Aubrey said. She sat down and pulled her hair back into a ponytail real quick. She started talking and then stopped abruptly.
Rick said, “Aubrey, are you okay?” There was no response. He turned to the audience. “This is a typical absence seizure. She looks like she’s daydreaming and stopped what she was doing.” Then she started talking again. “She picks up where she left off. There is really nothing you can do first aid wise to someone having this type of seizure.”
“You can help them get caught up. Remember they don’t know that they’re having one, so they might miss something a teacher has said. You can help by showing them your notes or telling them what they missed. The biggest thing is to not make fun of the person. That really hurts,” Aubrey said.
“Now for the next one,” Rick said and he fell to the ground. It looked so real. He started jerking his whole body around.
Aubrey stood up. “For this, people used to grab the tongue or try and hold the person down. NEVER do that. You can’t stop the seizure. Either can the person who is having it. It has to play out. Watch the person. Look around to see if there’s a desk, chair, sharp object that you can move out of the way so that the person doesn’t hurt themselves,” she demonstrated by moving some things away from Rick.
“You can place something under their head if you have the chance. Otherwise you can just watch. When the person stops thrashing around, then you can help.” Rick stopped. Aubrey got down and pushed Rick onto his side. “Keep the person on their side. Sometimes vomiting occurs before they wake up and if they do vomit they can aspirate it or choke on it. If they are on their side, it can go on the floor. Stay calm, stay with the person until they are alert.”
Someone raised a hand and Aubrey called on her. “Shouldn’t you call 911?”
“That’s a very good question. If this is the person’s very first seizure, definitely call. If you don’t know the person at all and find someone seizing on a sidewalk, call. If this is someone you know has epilepsy, 911 isn’t needed UNLESS that person hurts themselves in their seizure.
“Maybe when they fall, they hit their head hard. You should call for that. Or if the seizure lasts more than five minutes, you should call. The other time to call is if someone has one seizure and then has another a couple minutes later.
“The best thing for you guys to do is have someone stay with the person having the seizure and another person go get a teacher or the nurse and once the seizure is done they can bring them back to the office and have them go home to rest.”
Rick got back up. “In other seizures, the same thing is done. Just watch the person to make sure they’re okay. If they start jerking one arm, don’t make a big deal of it. If someone starts talking funny, just go along. If someone blanks out, just help them when they come back.”
Dr. Cramer stood back up. “Are there any questions at this point?”
A couple hands went up. Dr. Cramer picked someone. “Aubrey, you said you were studying to be a doctor. Do they allow people with epilepsy to be doctors?”
“Sure they do. I might not be able to be a surgeon or even an OB, but there is no reason I can’t be a general practitioner or an epilepsy specialist.”
“Are there limitations on what you can do?” she asked further.
“Yes, I can’t swim alone.”
“I can’t even be in my parents’ house alone,” Rick said. “Driving i
s not allowed until you have been seizure free for a certain amount of time. Being a surgeon or operating heavy machinery. But, there are many jobs out there we can hold. I’m not giving up my dream of being a reporter just because I may seize once in a while.”
“Yes?” Dr. Cramer picked someone else.
“Do you ever grow out of it? Or get cured?”
“Sometimes, yes. Other times, no. It depends on the type of epilepsy and seizures you have. It depends on the medication. Sometimes the medication handles all of it.”
“Does the medication always work?” someone else asked.
“No.” He shook his head. “There are many people who still have severe seizures even though they are on medication.”
“What do you do for them?”
“Sometimes we can do brain surgery, but it’s risky. You have to weigh the seizures to the risks and decide.”
“Are there any other questions?” Dr. Cramer asked. Nobody else raised their hands. “Then I am going to introduce you to Connor Kavanagh. He’d like to speak to you for a few minutes.”
Surprised, I looked over at Connor who winked at me and got up. He took the microphone. “Hi. My name is Connor and I don’t have epilepsy.” A few of the kids murmured. “My sister was diagnosed with epilepsy when she was five years old. I was eleven. And boy did it rock my world!” He laughed.
“My parents were set on keeping her safe and a lot of times I couldn’t do things because my sister couldn’t do them. It took a long time for me to understand her disorder. She grew into a lovely young lady. She is happy and optimistic about the future. She has goals and dreams. Actually, she is my hero.
“I see her suffer through seizures almost every day. I don’t know how she does it. I’m not sure I could. We are having this assembly because she is new to this school. We wanted all of you, her peers and her teachers, to know about epilepsy. What I want to ask of you is to get to know her and not just her disorder.” He looked down at me and held out his hand. “Teagan?”
I took a deep breath and took his hand. He squeezed it before he sat back down. I heard a lot of murmurs from the audience. I couldn’t see very far with the lights shining in my face. “Hi,” I started out. “Some of you have seen me around school. I started here last Monday. My name is Teagan Kavanagh. I’m in eleventh grade and I have epilepsy.” I paused. “These guys have pretty much explained epilepsy. Do you have any questions for me?” Please say no, please say no, please say no – I chanted over and over in my head.