Riding the Lightning

From an Insider's Point of View

I’m always told that I will get used to having epilepsy. But how can you get used to something that deep down has ruined your life? When I was diagnosed with epilepsy at the age of 18, I felt like my whole world had fallen apart, and to this day I still do. Before the diagnoses, I had all these dreams of what I wanted out of life: to be a mother, have a great job, and most importantly be happy. But that all changed. When that first seizure came, little did I know that my life would be changed forever.

The first seizure, I didn't think it could get any worse. However, I was wrong. The second and third ones were just as bad. That is when I was sent for scans. EEG and MRI proved to be awful, but it would be weeks before I got those results. Sitting in the doctor's office with my dad, hearing those words… "You have epilepsy." I felt like the world had ended. What was I going to do with my life now? Who would want to be in a relationship with some freak? How could someone like me have children? So many questions, but at the time I had no answers. I still have no answers to many questions.

Every three months, I had hospital appointments. If I wasn’t seeing a neurologist, I was seeing a specialist. Trying to find the right medication wasn't easy. "You can't be on these two at the same time; they will counter themselves out," I was told on numerous occasions. "We want to put you on this one but you're to young at this time. Maybe later." It would turn out eventually that that medication proved to be the one that stopped my seizures, or at least hold them at bay. But what people and doctors didn't understand is that it's okay stopping the seizures, but what about the rest of my life? How has turning 18 become a nightmare that I would have to live with for the rest of my life.

When we were all young, we all said, "When I grow up, I want to be an astronaut or a princess." We dreamt that if we worked hard enough we could do whatever we wanted. Everyone encouraged us and our parents wanted us to live our dreams. I was no different. I wanted to be a nurse, to help people who needed it. However, that changed pretty quickly, there was no way I could be a nurse now. Those dreams were shattered, torn apart like they were nothing. All I knew then was I was an 18-year-old woman, diagnosed with epilepsy with no future. So what was the point? What use was there, me being a person on the planet just taking up space? If I wasn’t here, would anyone really miss this person who had become a hindrance? In my mind, the answer was no. I will get to this at another part of this story.

"We don’t want to put you on that medication yet; you’re too young." The day eventually came where there was no other choice. "There are side effects," the doctor told me, "possible weight gain, having children, and the worst depression." I was already at the stage of depression so there was nothing new there. The other side effects are what concerned me. Within a month of taking this new medication, I gained a stone in weight. I tried not eating, making myself sick, everything, but nothing worked. So I thought, "Well, what’s the point?" So over time, I put on more weight until one day I looked in the mirror and didn’t recognise the person looking back at me. I tried diets but I would lose a few pounds one week. The following week I'd put it all back on. It was a battle I'd end up losing every time. Then it came to children. I wanted to be a mother. That dream has never changed and I hope one day that dream will come true. The only thing is because of this medication, my child is more likely to be born with a disability. Is it selfish for me to take that risk? Some days I think it is but others I don’t. My heart says have a child, but my brain says it's risky. I’m stuck between a rock and a hard place. Maybe one day I will decide on what to do with that part of my life.

I don’t think people really understand how epilepsy effects you. My doctors told me in the beginning to join a support group to help me get through this and adjust to the way my life has changed. What they didn’t understand is the closest support group to me was over 20 miles away. That is a long way to listen to a group of people say that over time, you will learn to come to terms with it. I still haven’t. Even after 13 years, I wonder what I did to to deserve this. There are no answers to that question and there never will be.

In the beginning, I suffered with depression. I even tried to commit suicide as I couldn’t cope any more. I hated myself for failing and tried again. After the third attempt, I realised that I wasn’t meant to die yet. I had a purpose and even though I don’t know what that is, I will keep trying to find that out. One thing I know right now is I'm going to go on trying to find my place. Life may knock me down, but I will keep getting back up, and until the day I do die…

I will keep riding the lightning...

Now Reading
Riding the Lightning
Read Next
What is Type One Diabetes?