The following blog is by Erin Seiler, a youth leader with NCWD/Youth’s Youth Action Council on Transition (YouthACT) Team Seize Control. YouthACT is a national project for youth ages 12-25 geared toward getting more youth with disabilities involved as leaders in their communities. Team Seize Control’s supporting organization is the Epilepsy Foundation Eastern Pennsylvania (EFEPA).
There are many ways to explain Epilepsy. It’s a seizure disorder, a misfiring of the nerves, a thunderstorm inside your head. However, very few people actually look to see what’s behind the definition. Very few people dare to dig deeper than that four- or five-word sentence because behind that veil, lies more than 65 million faces and within each and every one of those faces lies a story of someone who struggles with Epilepsy. As one of those faces behind the veil, I would like to tell my story so that maybe, just maybe, one day that veil will be lifted for the whole world to see.
On a rainy afternoon, in the summer of 2002, a herd of six-year-olds surrounded an old television set in Goddard Day Care. Walking into the small room, one of the counselors turned off the lights as I sat down next to my friend, Rachel. This is the last thing I remember before waking up in a room of white walls on a hospital bed. My mom and dad were sitting in two small black chairs beside me. Overwhelmingly confused, I wanted to ask what had happened. Unfortunately, a tall man in a doctor’s lab coat entered the room before I ever got the chance. He asked my parents if he could talk to them privately in the hallway. As they walked away, I attempted to make out what they were saying, but it was no use. Peeking out from the corner of the latex scented wall, I watched my parents’ faces as the hope and curiosity slowly melted away. Sadness, confusion, nervousness, and dismay took its place. This was a face I would become all too used to seeing. Later on, I would learn that I had had a seizure.
A seizure is much like an unexpected thunderstorm in the brain. Electrical signals are constantly firing throughout the brain in order to tell your body what to do. A seizure occurs when there is a misfiring or multiple misfirings of those signals within the brain. When people think of seizures, they often imagine someone on the floor with limbs flailing everywhere. This is called a tonic-clonic seizure, or more commonly known as a Grand mal. However, this is only one type of seizure. There are up to 40 different types of seizures that exist. A seizure can be different for each person. Losing consciousness happens often, but not all the time. A person can be somewhat aware or conscious while experiencing a seizure. This can vary depending on the type of seizure someone is experiencing. In the United States, 1 in 10 people will have a seizure in their lifetime.
After a year had past, thoughts of that seizure had all but faded into oblivion. That is, until one morning, right before school. Thick purple covers engulfed me as I laid sound asleep. All of a sudden, I heard my mom’s voice frantically yelling out my name like a distress signal. Utterly confused, I woke up to ask her what was happening. It was as if I had given her a heart attack just from being in a deep sleep. When she called an ambulance, I thought she was being ridiculous! “I just overslept. I’m sorry!” I said. I quickly realized there was no changing her mind no matter what I said. Strapped to a gurney, they rushed me to the hospital, where I was diagnosed with Epilepsy. What, from my memory, seemed like waking up from a deep sleep, was actually waking up from a tonic-clonic seizure.
Although I started having seizures much more frequently, I never quite got used to the intense look of fear in my parents’ eyes. I remember one night around midnight when my parents were leaning against my bed as if there was some kind of psychoanalysis going on that I didn’t know about. I was confused and it took me a moment to remember who they were, but I felt fine. Then, they asked me what my name was and for some reason it just wasn’t coming to me. I was starting to panic. They asked me my name and I couldn’t remember. My parents were screaming with worry “What is your name?!” and for the life of me, I couldn’t remember who I was.
What I was experiencing here was something called the postictal state. The postictal state is the altered state of consciousness someone experiences after they’ve had a seizure. The symptoms during postictal state vary heavily between each person. Sometimes there is a loss of a voice or a stroke-like mumbling. There could be feverish symptoms or vomiting. It could even be as simple as dizziness and exhaustion.
As the years went by, I was put on numerous medications and countless different doses, sometimes changing every week. I like to laugh at the fact that I can remember the side effects better than the names of the medications. Most kids are anxious to turn 16 or 18. I was excited to turn 12 and 15 because those are the ages my doctor told me I might grow out of Epilepsy.
There is currently no cure for Epilepsy. There are, however, medications that can attempt to keep seizures under control. If the first two medications are not successful, there is a decreased chance of that person’s seizures being controlled. Unfortunately, this is the case for much of the population. In fact, one-third of people with Epilepsy are drug-resistant to all treatments. Some kids grow out of Epilepsy, but, for the most part, it is lifelong.
When I was in junior high, to be honest, I didn’t really remember much. The one thing that does strike my memory, however, is a constant flow of teachers telling me to stop daydreaming. I would always get confused by that term because I never remembered having a dream. Figuring that the teacher was right, I just brushed it aside and attempted to get more sleep. However, as the months went by, the “daydreams” started to happen more frequently. I was starting to fall behind in school when a regular EEG appointment answered my questions. I was having a new kind of seizure called absence.
Absence seizures are lapses in consciousness that often occur with staring. Because they begin and end rather abruptly, they can go undetected for months. They are often mistaken for daydreaming. After an absence seizure, a person will most likely continue what they were doing before.
Very few people contemplate the topic of discrimination related to disability. I will never forget the first time my dad told my friends’ parents I had Epilepsy. Their faces were completely frozen. Gradually, as word spread around, I was getting invited to less and less parties and sleepovers.
People are afraid of what they don’t know or rather what they think they know. There is an endless list of myths about Epilepsy. Some common myths are that Epilepsy is contagious or people swallow their tongues while seizing. Epilepsy is the 4th most common neurological disorder and yet, somehow, I believe it is one of the most feared and unknown. It can affect any age, race, gender, or economic status. 150,000 people are diagnosed with Epilepsy each year. Sixty percent of Epilepsy cases have no known cause.
So, here I am, six years later, a sophomore in college, writing a piece about a disability called Epilepsy that is hidden behind a veil of ignorance and fear. More than 65 million people worldwide live with this incurable and often misunderstood disability. Through education and awareness, this veil can be eliminated. On March 26th, the world will celebrate Purple Day, a worldwide awareness day for Epilepsy. So, show your support, spread the word, wear purple, and upload a picture using this hashtag #epilepsyawareness.
- Communicating With and About People with Disabilities
- Attitudinal Barriers for People with Disabilities
- Transition’s Missing Link: Health Care Transition
Also take a look at the YouthACT co-written publications:
- By Youth, For Youth: Employment
- Guiding Your Success
- Hitting The Open Road After High School: How to Choose Your Own Adventure to Success!
Learn more about YouthACT and check out some of other blogs written by current YouthACT participants and alumni:
- The Path for Passion – by Blake Ayers, YouthACT Team Guiding Lights of Indiana
- Ed Roberts and the Americans with Disabilities Act Legacy – By Sam Xu and Heather Yaden, YouthACT Team Berkeley