Going back to 1994, I remember experiencing a feeling I had never felt before and the only thing I could think to do was to run to my mother. At the time I was so young all I could do was gently place my hand on her leg and say, “Mommy, I don’t feel good.” Every time I had felt that specific feeling approach me all I could do was run to my mother and hug her until it disappeared.
In the early 1990s it became known that I was living with epilepsy. As a young girl, day-by-day, I started living in fear of not knowing when an epileptic seizure would approach and that is when fear became a part of me. At age eight, I had my very first tonic-clonic seizure and when that epileptic seizure took control of my brain I was locked in it for eight hours. Once that seizure took place everything changed. In time it became clear that multiple things were setting my seizures off, such as chemicals. I was seeing my mother one second and then disappearing straight into a fictional land. Over time epilepsy became me and I became epilepsy.
Never knowing when an epileptic seizure was to approach, I settled into a cycle where epilepsy had full control over the functioning of my brain. For close to three decades I trained my brain to live in constant fear, stress, anxiety, depression, self-worthlessness, self-hatred and suicidal thoughts. Step-by-step and day-by-day I had lost myself in a non-stop cycle of believing the day was to be a day of constant epileptic seizures.
I had appointments with epileptologists, neurologists and multiple doctors, but it became clear not one of them could connect the dots. I have gone through brain surgery, multiple MRIs and many EEGs, trying medications of all sorts, but many of my specialists were looking from the wrong point of view. Specialist kept using the same tactic of explaining the hardest thing to learn in medical school is the brain, but I believe that is a complete lie. Across the world, if you want to become a medical physician, you have to go to university. Because of my epileptic seizures, I was kicked out of high school, but in time I slowly started connecting the dots
For many years I was living with aura, complex and tonic-clonic and it came to the point where I hated my life. Not one medication ever helped stop, of even decrease, my seizures, they just placed my health more at risk from side effects. I have been prescribed such high dosages of medication I could simply not think straight and it came to the point that I came close to overdosing.
Epilepsy has been seen wrongly for many decades and many have to learn it is one step forward and two steps back. When epileptic seizures start young, a child grows into a person who lives only epilepsy. After a first epileptic seizure, the brain becomes stalled in fear of the next. Having a young child feel the worst feeling they have ever felt in their life, one they never forget, is strong enough to grow and become them.
Speaking as an epileptic, training our brains to replay this video as each day passes, we come to the point that we forget who we are. Epilepsy takes control of how we think and live our lives. Fear, anxiety, depression, self-hatred, self-worthlessness and suicidal thoughts take over. That is what people living with the disability of epilepsy become. It came to the point where I had nothing left but to accept myself for who I was and that is the day everything changed. I slowly started seeing the beauty that was within me and my epileptic seizures slowly started decreasing to the point where this is the best my health has ever been.
The young ones who are developing epilepsy have to learn how to see the beauty within themselves as well as the things that give them fright. To all parents, if your child is developing epilepsy, buy a simple object that they do not want near them and place it in their room where it will be seen at all times. Once your child fully accepts the greatness of it, they will learn to see the greatness in everything. As they learn to see there is love and beauty in everything, their epileptic seizures will not have the strength to win.
All must learn to love our self for who we are.
