By Katlyn Woods
What I’ve Come to Realize is a story that tells of the frustrations and embarrassment one family undergoes when dealing with a father who has epilepsy. However, from the point of view of the daughter, the story explores all the positives that her father’s disability brought into her life– ones many people wouldn’t realize. Childhood, love, sadness, and guilt are all themes considered, but how is it all tied together?
Photo by Katlyn Woods' Mother
My mom smacked her hand on my father’s mouth, probably wishing he would suffocate. She tried to silence him, but he couldn’t be. His face was pale as he rubbed his hands in a circular motion on his stomach and spoke loudly, repeatedly asking, “what do I do?” His lungs were gasping for air as he tried to stand up a couple times. My mom slammed him back down each time, and I knew she was praying for it to be over.
A seizure.
Hundreds of eyes stared at my family– they stared at me. Some contained hints of worry, but most looked confused. Why is this man yelling during a graduation? It was my brother’s fifth grade graduation. I found it hard to not feel betrayed by my father, but it came only from the embarrassment. Why would he do this to me? I knew he couldn’t help it– which made me feel guilty for having those thoughts.
He had seven seizures that day, possibly a record. I was maybe eight years old then. The atmosphere in my household for the rest of the day was tense as my parents argued because of my mom’s frustration with my father. She hated his seizures, probably more than he did. She wished she could go out to eat with my dad, but certain foods triggered his seizures. She wished money wasn’t so tight because of his inability to work. She wished she could go out in public as a whole family and not have to constantly watch my dad for warning signs.
I thought about that stuff a lot, too. How different would my life be if both of my parents worked? How much more comfortable would we be living because of that? My household was loving, but, of course, stressful. To make it worse, a lot of times when the whole family sat at the table, enjoying a conversation or perhaps celebrating a birthday, a seizure would hit and destroy the vibe we created. My dad would lose his appetite, which upset my mom because she cooked for hours. He had them on our sparse vacations, too, which would make everyone quiet for an hour because my dad needed time to get his head together and my mom needed time to cool off.
He had a seizure at my uncle's wedding and my grandma had to walk him down to the nearby lake. When he came back, his eyes were fuzzy and he pursed his lips in his usual sad smile.
“Are you okay?” I asked. He nodded.
“Did everyone else see?” He asked.
“No. They were doing their own thing.” That was partly true. Everyone did see, but they chose to ignore it because they all knew. I felt like crying for him, but after a little while, he walked back into the crowd and acted as if nothing happened.
I knew not every family had to deal with seizures, but what I didn’t know was that my life was different because of them in ways I am still trying to understand today.
*
My dad began receiving disability checks when I was very young. That made my mom the only person with a job to provide for us, which left my family with hardly anything. She always complained about never having money, but she made sure her children had nicer clothes than her and trips to amusement parks. She tried hard in everything for us– like making Christmas feel like magic and buying us giant stuffed animals on Valentine’s Day. I feel she was always trying to give us a normal childhood, overcompensating for things she thought my dad was lacking in. He couldn’t work, he hardly left the house, and he seemed to never have energy. So, my siblings and I were home a lot. I think even now my mom feels bad about what she believes we missed out on, but there’s nothing I wouldn’t do to go back in time and live it all over again.
Some people would consider my dad lazy and I see it sometimes too, but he always made sure there was a hot meal on the table, perfectly timing it with my mom’s arrival from work. She often laughed at the instant mashed potatoes, and we would call him out on his little effort. However, getting older, I see that what seemed like little effort was actually a lot– he did all he could. He might not have seen the importance of birthdays or Valentine’s Day, hardly buying gifts or flowers, but he was always there for us.
When I was in the first grade, my class was doing something special for Mother’s Day. Mothers showed up, but I knew my mom had to work, so there would be no one for me. I felt a ball of tears building up in my stomach as I watched my peers smile at their moms. But then, a familiar brown shirt and medium-wash Wrangler jeans walked into the classroom. My dad smiled at me and spread humor into the room, making small talk with some of the moms. I remembered the deeply pushed down tears fading as I watched my dad.
Every day after school, my dad would sit me and my siblings down at the dinner table and help us with our homework. He taught me how to spell ‘because’ with a song he made up and he told me to always write my last name on every paper. I remember my sister and I would make him laugh by drawing chickens on our homework.
“Guys I’m serious,” he said. “You need to turn that in.” He tried to look annoyed, but he couldn’t hide a smile on his soft face.
I hated doing my homework right after school like he made us do, but now that I’m older, I see that he was teaching me work ethic. I think most importantly, though, is that he taught me what patience looks like in a person. Sometimes I would be in tears over my homework and just sit there, but my dad sat with me. When I was in high school, my dad would stay up for hours helping me study for my Spanish exams and would be the first one to congratulate me when I passed them.
My dad had a large telescope and spent a long time focusing it on Saturn for me as it zipped by. He had a scary gray mask that had dirty teeth which he terrorized me and my siblings with– hiding in our closets or under our beds. We screamed while my mom comforted us. He played music every day - extra loud on Friday - and showed us how to have fun after a hard week. When I was sick and had to stay home from school, he cleaned the throw up and bought me lemon-lime Gatorade. I cried over silly things, but he listened and would even try to make me laugh. His seizures prevented him from doing a lot of things, but it didn’t prevent him from missing a moment in my life.
*
My dad’s seizures are different from what most people think when they hear “seizure.” He doesn’t convulse or fall to the ground. He is able to walk around and speak, although his sentences are limited. They last about thirty seconds, but he doesn’t gain consciousness again for another thirty minutes. Most times he will ask me if he even had a seizure because he’ll feel funny but doesn’t remember anything. One minute the clock says 8:15, the next it says 9:00. He told me one night that he is at peace with dying because every seizure gives him a glimpse of what it is like.
Last December, my dad wasn’t able to get his seizure medication, which is dangerous to stop taking abruptly. After a week, I noticed a change in his behavior. He was constantly drained and his seizures were lasting a little bit longer. A couple days after that, we were having a family dinner, but before my dad could touch his BLT, he lifted his hands and I could see the slight shake in them. His eyes got a little wider as they looked at me. They weren’t my dad’s and I wish I could say they were unfamiliar to me, but I knew them all too well. They didn’t know me, though, which was the hardest part.
This seizure was normal until it went on for forty-five seconds and then a minute. He walked to his spot on the couch but then stood up straight away and tried for the backdoor. My mom fought with him for a grasp on the door knob. Him going outside during a seizure is one of our worst fears because he could trip down the stairs or stroll into the busy highway. He gave up on the door knob and went back to the seat on the couch. I was getting uncomfortable with how much time was passing.
He was murmuring to himself as I struggled to get his attention. I remember feeling a wave of panic, wondering if he would ever wake up. I wasn’t prepared to lose him on that Wednesday evening. He might not have died, but I think I would’ve preferred him to die than remain in a state that couldn’t recognize me as his daughter. I could say goodbye and give him a hug, but I knew they would make me forget what his real hugs were like.
Eventually the murmuring stopped and he began to regain consciousness. While going to the dinner table to finish my BLT, I looked to the left and saw his perfect and untouched. I thought about how close it was to becoming an item worth encapsulating. I cried for an hour that night and I think my mom did too. Though she is always frustrated, she has been there for my father for over twenty years, and I know she will continue to be. She taught me how to love.
*
I always wonder how my dad is so strong– how he can wake up every morning and prepare for a day that will be just like yesterday. He sits on the couch with his neck twisted to the left so he can watch television. One of our dogs will bark to be let outside and then ten minutes later, they will bark to be let back in. He changes the channel, prepares his lunch, and then lets another dog outside. My mom calls him on her lunch break and then at 4:30 when she leaves to come home. Dogs need to be fed and dinner needs to be cooked. My dad often expresses his joking hatred for our four dogs, but what else would he have to do? Our Great Dane may be sloppy and anxious while our deaf and blind dog is needy, but their needs give him a reason to get out of bed.
My dad never leaves the house unless it’s necessary and his one friend recently passed away from cancer. He lost his passion for painting years ago and his body is too old for home improvements. What I think is the most devastating, though, is that I’ve left for college and so have my siblings. Children are supposed to leave the nest, but to me it feels like abandonment.
One evening, he told me we were his only reason to get up in the morning. We still are, but it’s different not being there.
When I am there, it is easy to spend a whole day talking to him– I’ll wobble on one of our bar stools for hours while we discuss music and the universe. I am taking an alien life class just so I can share the ideas I learn with him. When I am there, I make him listen to songs I like and he gives his honest opinions. He’ll cook me eggs at 2 p.m. when it’s just me and him– probably so he could sit down with me a little longer. When I am away at college, though, all I have is my phone to communicate, which I don’t use enough. I know I have to leave home in order to achieve the great things my dad devoted his life preparing me for, but he didn’t prepare me on how I should leave him behind. He’d tell me to go as far away as I can and never come back if it means I have a future, but what is a future without the one who believed in it the most?