EpilepsyTalk

Living With Epilepsy

Epilepsy is one of those invisible illnesses and because of that, it can be hard to understand what someone who lives with it on a daily basis goes through. It can be especially hard for someone to understand how hard it is for those with epilepsy if the person with this condition is able to lead a productive life. To help show the hardships of Epilepsy I am going to share a bit about my journey and its impact on my everyday life.

I had my first seizure at the age of 2 in a shoe store. My mother has regaled me with that story many times, although I myself have no memory of it. It was because of this seizure that for a time I was put on the medication phenobarbital. A seizure medicine that most doctors avoid today because of the nasty side effects. I don’t have any memory of the time I was on this medication but I do know how taking this medicine affected me. This medicine caused me to fall woefully behind my peers and learning became very challenging. I remember struggling in school and trying so hard and not seeing the results I wanted from my hard work. My hard work and studying produced C’s and B’s and rarely did I achieve an A. This, of course, caused me to have a low self-esteem at such a young age I felt I must be stupid. I had no way of understanding that my falling behind my peers wasn’t my fault. I had no memory of my hardships at age 2.

I managed to stay seizure free for some years before I was officially diagnosed, but it wasn’t till years after my diagnosis that we began to suspect I had been having absence seizures all along. I am told that there were times they would look at me and say it looked as if I had checked out and then all of a sudden I was back. At the time we didn’t know such seizures existed, but its impact on my life was great. I missed homework assignments and key information during lectures at school. We think this is part of the reason I struggled so much in school. I was simply not getting all the information and was doing my work with less information than anyone else. It also had an impact on my relationship with my grandmother.

When I was a child I would often go to my grandparent’s house for a couple weeks in the summer while the rest of my family would go on a church mission trip that I was too young for. It was during one of these visits that my grandmother began to become very irritated with me. She thought I was ignoring her. When she yelled at me (only once, she had real patience) I was clueless. I didn’t understand why she was angry or why she thought I was ignoring her.  It was new information to me. She died from cancer before I was officially diagnosed with epilepsy and we now believe I had been having seizures while there. I wasn’t ignoring her I just wasn’t there during some moments when she was talking to me.

I was officially diagnosed with Epilepsy in 8th grade. The year before I had been bullied and this year seemed to be going much better. It was at this age that I met my good friend who I am still friends with today. We’ll just call her Brianna for now. (This is not her real name. I am changing it for her privacy.) This seizure problem wasn’t what I needed at such an awkward age. I was already insecure and add a seizure problem to that and the feeling is indescribable.

I was left with an intense desire to be normal. I tried to downplay my seizure disorder. It was awkward having to inform all my teachers and the school of my problem. It was all made worse as we began to experiment with different anti-seizure medications. Many of them had horrible side effects. Many of them caused me to become dizzy to an extreme. Often the room was spinning or I was seeing double or triple.  So reading a simple textbook proved to be an extremely difficult task. My hands were constantly shaking. It was because of this that I could no longer enjoy origami or learn how to knit. My hands were just too shaky for me to do any of that.  Even painting my nails was challenging.

Some of the medications had an effect on my mental state as well. Many of these drugs caused a deep depression. I went from a girl that loved playing with her cousins at family reunions and holiday parties to isolating myself in a room by myself. I just couldn’t motivate myself to go hang out with people I cared about even though I really wanted to. It made it difficult for me to process new information and retain it. Because of this, my grades dropped to C’s, D’s, and F’s. I was trying but I just couldn’t remember anything. So eventually I gave up. While on a drug called Topamax often nicknamed Dopeamax I found myself unable to communicate.

This was made clear through my writing. My writing was of a mature girl with a wide vocabulary, but when I actually spoke I couldn’t even tell you the plot to a movie I just watched. It was like being trapped in my own head and was maddening. I felt trapped and there was a time I even became suicidal. What we didn’t know then is that it wasn’t uncommon for those with Epilepsy to experience Depression or even suicidal thoughts.  I didn’t want to give my family anything more to worry about so I kept these dark feelings to myself. It is truly a blessing I am still alive today and that I never followed through on my dark desire to die.

Things became more difficult socially as well. From having to constantly explain what epilepsy was to trying to tell someone what a seizure was a like. A question that we struggle with because many of us don’t remember our seizures and the ones you can remember are very difficult to describe in a way that would give someone a good understanding. I also dealt with a fair share amount of stigma as well. I had someone tell me I must be possessed. Someone else told me I must not really believe in God and then continue to try and convert me. This was annoying as by that time I had given my heart to God and had been raised in the church.

It meant I couldn’t participate in a lot of activities others take for granted. If I wanted to go swimming in a lake with friends I first had to convince my parents it was going to be okay. Many epileptics are told not to swim in dark water, but I have always refused to let my condition dictate my life. I couldn’t scuba dive on vacation because it was too dangerous. There was a lot I was told no to and it was a bit like living in a bubble. It was especially hard on me when I watched all my friends learn to drive and I was stuck being a pedestrian as those with uncontrolled seizures are not allowed to drive by law. How long you have to be seizure free varies from state to state.  It was hard when at 6 months pregnant with my oldest child my husband wouldn’t let me pick him up from a work-related trip ( my seizures were well under control at that point). I instead had a friend drive. I loved the time with my friend, but it was a reminder of worse times in my life and having that decision taken from me broke my heart. This is a distant memory now and we worked that issue out and became stronger from it.

Having epilepsy made finding a job difficult. My first job at 16 I was doing well. It was at a movie theater that no longer exists. I was often scheduled during busy shifts and they seemed to appreciate my work at the concession stand, but then I had a small seizure at work. Everything changed. I suddenly was scheduled during dead hours on the creepy side. I was followed everywhere, even to the bathroom, and gossip began to circulate. Some I had begun to make friends with suddenly ignored me. I walked off the job one day when all the mistreatment became too much. My walking off the job was preceded by me crying in a closet for an hour.  Trying to figure out whether to disclose your condition is equally challenging. By federal law, they aren’t supposed to ask or allow something like that to affect their hiring choice, but when I didn’t have controlled seizures I did share this information.  I lost jobs because of it and even was given a job I wasn’t qualified for because of it.

Having this condition before legislation was passed to protect people like me with a pre-existing condition caused me a great deal of debt. It was one reason that for some time I didn’t continue in my education to get a bachelor’s degree. My medications often cost hundreds of dollars. There was even a point in time that I would pay over a thousand dollars for medication. When I lost insurance from work finding suitable insurance was impossible. All companies said they would cover everything except my epilepsy. Because of this problem living on my own was impossible and I lived with my parents until I met my husband. With medical debt and the student debt from earning an associate’s degree finding my own place wasn’t affordable.  While legislation has helped many like myself there was a period of about a year where my husband and I had no insurance as we were one of the few that fell in between the cracks. It was during this period I went without meds and was basically a ticking time bomb. I was fortunate and didn’t have any seizures but just the same I avoided driving during this time. Fortunately for me, I was pregnant during this year and one of the chemicals released in the body during pregnancy is known to help control seizures. We believe my pregnancy and breastfeeding actually kept my seizures at bay. I even continued to pump breast milk for some months after we discovered my baby couldn’t drink my milk.

The worst of it all is living each day wondering. Wondering why paramedics are staring at you and why you’re on the floor. Waking up and wondering why you are on the floor and your tongue is sore. Wondering why you are in a hospital bed. Wondering why your lying in a bathtub with the shower on and only realizing a few hours later what happened. Then awkwardly telling someone you had a seizure. Wondering if it’s your fault as your child seizes in your arms. Wondering what life would be like if you didn’t have to choose between seizure control and depression. Wondering when your next seizure will be. Wondering if the next seizure will be the one that kills you. Yes, by far the worst is all the wondering you can’t help but do.

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1 Comment

  1. Jamie S. says:

    Well said. Epilepsy is oppressive. I know you still have to deal with a lot of this. But kudos to you for being stronger Han your epilepsy. It seemed like for a lot of your life, you were identified as the epileptic. No more. You are now identified as wife, Mommy, friend, daughter, sister, cousin, who just happens to have epilepsy. We see you, not the disorder. There is a lot to you and more is revealed every day. What you are doing for Epilepsy awareness is so important. I’m so impressed by andproud of you. ❤️

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