This is another guest post in the series, “Faces of Epilepsy.” I’m grateful to Tara for giving us the perspective of being an adult with Epilepsy. She writes here and her posts reflect her hope-filled and joyful attitude.
I am a mother of two beautiful children.
I am filled with hope, laughter and self-esteem.
I am an author, a motivational speaker, a community volunteer and best yet… a full-time mom.
I move frequently and travel often.
I am a Navy wife; therefore, I’m a single mom while my husband’s at sea.
I am independent in life yet endlessly seek the company of others.
I AM AN EPILEPTIC.
My life was as “normal” as is the life of any pre-teen. I started having odd “spells” when I was in 8th grade. After brief episodes, I would tap my face and count my fingers; I would become very confused and very tired. The spells did not go away. I played sports. I never did well at applying myself fully in school, but that was by choice rather than because of any illness. I sang in choir. I played in band. As I said, I was as “normal” as any preteen.
One night while in 11th grade, I was in bed and called out to my parents. Something was not right. I patted my face and counted my fingers, but the numbers did not add up to 10. I was not okay. The next thing I knew, I felt myself floating in the cool night air with the stars above me. In reality, I was on a stretcher headed towards the waiting ambulance. This took a long time to comprehend. I was sixteen. I had recently been given my driver’s license. This was my first major step towards adult independence. After driving for only a few short months, this ambulance ride caused me to lose the independence I had been so excited to gain. Seizures take away more than what is written in a medical chart.
I went to college and graduated with a four year degree shortly after I turned twenty. Seizures do not cause people to become low achievers. Many different anti-epilepsy drugs, many EEG’s, many MRI tests and many, many visits to neurologists did not take away my will to make the most of my teenage years.
I told friends to never call the ambulance. I had seizures and let them know ahead of time I would be okay. There was nothing scarier than waking to a room of strangers asking questions like what my name was. I knew I did not have the ability to give them the answers they were expecting. I was too confused processing painfully slow thoughts. When I went into a seizure, I would always know the tonic-clonic disruption was coming. I always felt scared waking in a strange place. It was always very frightening to be so confused I did not even know what month it was. I wanted quietness and comfort during the postictal phase. Yet, sometimes it was necessary to wake in those scary places.
Status epilepticus is caused from seizures happening one after another without the brain having a chance to come back to a normal baseline. I had status epilepticus. I am grateful my family insisted on taking me to a hospital that day. That decision saved my life. I woke confused. Yet, this was not the normal temporary confusion. This was confusion caused by amnesia. I even lost the memory of my children being born. I lost the security of my false belief that seizures, though annoying, really don’t do much harm.
Eight months later I made a necessary decision to have epilepsy surgery. I was twenty-seven. No treatment had been effective. The surgeons could take part of my brain or a seizure could possibly take my life. Even after the removal of a small portion of my brain, I was still able to move on and accomplish great things. I became a student again. I finished college with a graduate degree. I was independent once again.
After eight years, the seizures are back, but they are able to be better controlled. An epileptic does not feel any pain during a tonic-clonic seizure. It is only after the events do we learn why our body feels so battered. Fear, pity and sympathy we see in caretakers’ eyes are not fully understood until we see what a seizure looks like. Our bodies shut off memories and knowledge of our surroundings and events during a tonic-clonic episode. You believe you see us in pain; we feel nothing. Every epileptic responds differently based on where the seizure starts in the brain. No individual acts or reacts the same.
Everyone with a seizure disorder is different in this way. Yet, everyone with a seizure disorder is the same. We all want love, respect and patience. We want you to care but not live your life in painful worry. Seizures are my “Disease of Waiting”. I don’t know when the next one will occur or if it will never happen. I don’t know if the next one will take away more memories or if it will pass by without even a pulled muscle. I do know I will not live my life in fear, and let this apprehension rule my life. I, just as anyone with any disorder, have limitations. I want to control the effects of these limitations. I want you to notice my abilities. I am an epileptic, but I have amazing abilities that always outshine any disabilities.
To acknowledge the challenges and celebrate the attitudes and accomplishments of people with Epilepsy, please share this post.