We all know the story of Alice falling into the rabbit hole on her way to Wonderland, where she encounters an entirely unknown world. Like Alice, I also stumbled into a strange place full of curiosity and fear, unexpectedly seeing a different world I was unfamiliar with. But, unlike Alice, I did not meet a Queen of Hearts, a Mad Hatter, a Cheshire Cat, or a caterpillar; I crossed paths with doctors, tests, MRIs, CAT scans, and EEGs—the test does not hurt, sometimes it can be relaxing, I mostly sleep through the test.
It also came with struggles and odd, hazy medications. It is my new life—my own scary Wonderland. My life would never be the same.
Epilepsy is a neurological disorder that involves the brain, with recurrent seizures. A seizure may take many forms, including a blank stare, muscle spasms, uncontrolled movements, and convulsions. Epilepsy is one of the most common chronic neurological disorders: 1 in 26 people are diagnosed with epilepsy, and 1 out of 100 Canadians live with this disorder. There are different ways to get epilepsy: genetics, strokes, tumours, head injuries, drugs or alcohol, to name a few.
Animals can also have epilepsy. An epileptic animal could be unsteady and confused, then flop to the floor. It could twitch, drool, and move its legs like trying to tread water. One of the hardest things to remember is that this too shall pass. Most of all, stay calm, talk softly, ensure that the animal does not hurt itself, and take it to a veterinary hospital after the seizure to keep it safe.
November is Epilepsy Awareness Month. To help the public understand, you can wear purple, raise money, and assist in epilepsy awareness. This month’s goal is to dismiss myths and increase support for people with epilepsy, which will inform the public’s understanding and eliminate the fear and stigma surrounding it.
Throughout history, before epilepsy was understood and known about, there was a belief that those who have epilepsy could be a witch or affiliated with evil.
Also, March 26, Purple Day, is a day to learn more about epilepsy. I invite you to wear purple to support and discover the extraordinary world of epilepsy.
My story started on a morning in the spring of 2006 when a furry white rabbit led me down the rabbit hole; it was my first seizure.
I was 14, in my first year of high school, and school had already given me obstacles. But then everything changed; It was the start of epilepsy and seizures and the loss of my father.
I have a learning disability, and it was already hard for me to get through school since I learned differently. I did not need this—it was the cherry on top. It was hard to get through school, but I completed high school and graduated in 2009, which I’m proud of.
After the frightening seizure, I only remember bits and pieces of that day. The only thing I recall is waking up lying in a hospital bed in a foggy and hazy swirl of wonder: What happened? Where am I? How did I get here? Why? And what will my life be like?
I didn’t even know what the word “epilepsy” meant or what it was. I only knew of something called “seizures” since I witnessed my father having them growing up, although he never let epilepsy get him down. He always said, “Don’t let it run your life, you run your own life,” which I try to live by now. He was a very positive, intelligent, driven man. He had a heart of gold; he would give the shirt off his back if he could. He would do anything for anyone. He was the best father a girl could ask for.
But seizures were scary enough and I did not expect I would be going down the same rocky path as my father did when he was alive. I was informed that I had to deal with unexpected seizures called tonic-clonic (formerly called grand mal) and absence seizures throughout my life. Sadly, I do not have the luxury of a sign to let me know that I will have a seizure; it just happens out of the blue. My triggers are stress and lack of sleep. Listening to music gets me to calm my anxiety to avoid a seizure.
When I was first diagnosed, I was terrified that I would have the same horrible seizures as my father did; my dad followed the white rabbit and fell down the rabbit hole when he was 13. That’s when doctors and the world knew very little about epilepsy.
I was informed that my seizures were not like his and I’m lucky now that there is more knowledge about epilepsy, and I have the chance to have help.
After I had overcome the shock of my new way of life, it took time to return to explore my new world. I needed to learn about myself and the changes I had to get used to.
As time passed, I found the drive and strength to overcome the barriers and return to my student life. It was hard; it was a roller-coaster—it was my first year of being epileptic and without a father. Life will always surprise you.
After my world turned upside down and sideways, I was frightened at the idea of returning to school; it took me a while to go back, and my worst fear was that I would have a seizure at school and no one would know what to do. It was a whole new life of worry about. After some time, I found strength in my heart and soul; I knew I had to return to conquer my fear, which I did.
It was hard to go back, as nothing had changed because of my worries about feeling alone in school; my mind just wondered if I could trust the teachers and the school with my disorder, and my mind ached with wonder if there could be a chance of having judgmental friends. But, to my surprise, when I returned to school, I was greeted with open arms; they wanted to learn more about my adventure with epilepsy. I worried about nothing; it was just me, Katelyn; nothing had changed. My school understood. Trusting the school, teachers, and friends with my new life was hard but accomplished.
When you have a seizure, you don’t know where you are, who you are, and that you even had one. Every seizure is different. Seizures are very hard on the body because of all the uncontrollable jerks, movements, and falls.
There are many myths about how to help when someone has a seizure. Do not put anything, such as an object or hand, in the person’s mouth while the person seizes. The person can clamp down on the object, bite off a piece, and choke on it. The object will not prevent the person from choking on their tongue. Also, when a person has a seizure, do not hold them down when seizing. The most important thing to do is to stay calm, call an ambulance and move things that they can hurt themselves with. Stay with the person until they are fully alert and thinking clearly or when help comes. Reassure the person that they are okay and safe.
There are many different types of seizures, each with its own set of symptoms: generalized tonic-clonic seizures (jerking of the body), focal seizures (blankly staring into space, or experiencing repetitive movements such as lip smacking, blinking, grunting, gulping, or shouting), and generalized absence seizures (which seem like daydreaming).
At the time, I had numerous questions about what my life would be like. I still wonder about it, but I have found my way to a better tomorrow.
At 33, I feel more comfortable telling people about my epilepsy and my story; it makes me feel safer at work and school; that’s when I found out that most of the public does not know a lot about the disease.
It was hard to understand at a young age. It’s scary going through life not knowing when or if a seizure will show its wrath; it can happen at any time, anywhere.
Animals helped me with all my struggles. While growing up, I was around dogs and cats. I had a dog named Scooter, and she was my best friend. She had to go to the other side to join my father when she was 16. She had a wonderful life.
Now, I have a dog named Quinn, named after the comic-book character Harley Quinn, who she acts a lot like in her doggy way. She is a Shih Tzu Maltese cross; she is three. Animals have always helped me get through the daily life of having epilepsy. She is my little diva princess, my little girl. Animals are essential to my heart; having a dog that loves me makes me whole again.
Some dogs can help people with epilepsy in any way that fits their needs; seizure-alert dogs or emotional support dogs can be trained to perform various tasks, including lying next to someone having a seizure to prevent an injury, placing their body between the handler and the floor to break a fall at the beginning of the seizure, and staying with the handler during a seizure to provide support and comfort. The animal will let the person know before the seizure happens.
When I was younger, I thought I was alone and that no one would understand my hurdles, which brought on depression, isolation, and social anxiety.
I try to keep moving forward by writing and listening to therapeutic music, which can help me endure life’s struggles. I have a group of songs that I call My Soundtrack of Life. I like to listen to things I can relate to; the songs are essential to my everyday life and help me through difficult, depressing, angry, or dark times. They’ve helped me throughout my life. Also, writing always helps me express my emotions since it’s hard to show and say how I feel because I cannot find the right words.
Epilepsy has been a rollercoaster of emotions that brought on additional social anxiety, stress, and feelings of isolation and shyness. I feared the world of being epileptic and worried I would have the same seizures as my father, but my seizures now are controlled, for the most part, with medication.
Throughout the years, I found the spirit to find ways to help others feel that they are not alone, like when I was first diagnosed. I believe I’m no longer alone and that others are on the run, walking, stumbling, tripping, and falling down the path of epilepsy.
In the past, I just wrote for myself in my journals. I thought my story could help someone. I always felt that I couldn’t write because of my learning disabilities, however I discovered that many famous people, such as poets, writers, singers, and actors, have the same issues.
There are even people from history rumoured to have epilepsy, such as Beethoven, Joan of Arc, Napoleon, Sir Isaac Newton, Leonardo da Vinci, and Harriet Tubman. They did what they loved to. Self-confidence is within.
Learning about these famous, well-known people taught me that you can do anything you want with your life, no matter your battles. And it gave me the confidence to keep doing what I love: writing my hardships and poetry to express my emotions on paper.
Today, I reflect on my bittersweet, harsh times in life. I was lucky enough to find a small job and go to school with a learning disability, depression, social anxiety, and epilepsy, and after all these ups and downs, I found who I am. It made me stronger, and I could be whoever I wanted. I saw there was a world of dozens of people with epilepsy online, and that’s when I started to figure out how I wanted to write my story.
I learned that I was not alone when I found other stories like mine. Knowing someone is going through the same thing can make life easier. All I want to do now is to make epilepsy known and tell my own story so others will know they aren’t alone either, that there are others out there in this wild world, and that epilepsy is not as scary as we think—the unknown might not be as frightening.
Self-love is the most essential thing in life. I am and will always be proud to call myself an epileptic. I am the daughter of an epileptic and life is an epic epileptic life.
I am a purple warrior.