Iliana, 24, USA

May 30th, 2007 was my last day as a "normal" person.

The next day early morning, I was diagnosed with epilepsy after a cluster of nocturnal seizures. I was taken to the hospital via ambulance with no breath and no heart beat. I thought nothing of it at the time, and since I was still alive I had other things to worry about like The Prom & Graduation. Since then, there have been many changes in my life that have taken place. After graduation, summer of 2007 was one of the most depressing summers of my life. I had never drank alcohol, never smoked, and had not bothered with drugs in my entire life, I volunteered, I was smart, had great grades, feared God and followed The Golden Rule to heart. My parents had raised me to be a good person. I meet their expectations, this and much more. I got to the point that most people around me told me: "Iliana, you are perfect". Inside, it buried my confidence because I was broken. How can something that has seizures be perfect? I kept the fact that I was epileptic to myself. Spoke to no one. I did not want to get out of the house, did not care for company, and saw myself inferior to everyone around me. I lost all my childhood memories entirely and have had memory problems since. The "perfect" Iliana everyone knew, literally died on the last day of May 2007. No physician could tell me why or how my seizures were being caused. My neurologist did explain what happened to me the day I was diagnosed. It took minutes to recover my breath after the last seizure, instead of seconds; my heart beat and breathing stopped for 3 minutes (in other words I died for 3 minutes) in the ambulance on my way to the hospital. Just for your information, there is something called Sudden Unexpected Death in Epilepsy (SUDEP). It's self explanatory. If I had stayed dead (and would have been taken to the morgue) my cause of death would have been SUDEP. Since it had happened before chances of happening again were (still are) high, I could die permanently by having a seizure, even a small one. "Chances of [me] making it to the age of 30 [are] slim." To hear that at 17 did not help my depression but I was not about to tell anyone. Accepting who I was and all these drastic changes in my life felt like my dreams had been pulled out from under me. I was so sick of happy optimistic people. I hated them. I believe medication also did not help my situation and made me more depressed. I hit rock bottom and wanted out of this world. I did not want my family to know I was feeling this low; what would they think? Did I even care what they thought? I had my whole life ahead of me. Did I really? I was supposed to have died. However, around the same time I started emailing a friend for support who just listened and helped me through the deep dark hole I was in, I had a good connection with him during high school, but he had moved to a different state. He unintentionally had become my best friend who knew everything about me, even more than my own parents, and could clearly see the masks that I wore for everyone around me. We married two years after we started dating. I got off my medication, was placed on a strict diet and high supplement regiment and was no longer depressed. I had been medication and seizure free for 10 months before I had to go to the hospital again. I was congratulated and given the great news that I was going to be a mother. We had not planned for a baby and this became a stressful time. I was now responsible for another life inside of myself whom I could possibly hinder or kill with lack of oxygen from seizures or if I died. Obviously, it was a high risk pregnancy. It took many medical professionals to ensure the safety of my baby and myself. My new medication was slowly increased to the dosage that controlled my seizures. I delivered a physically healthy baby girl. I was kept on medication since I have a low threshold; if I miss a dose, even one pill, I have a seizure. I have memory problems and I admit every so often I have forgotten a dose. But I am getting better. I try to write everything down to make up for my memory problems. Last year things got complicated there was the possibility of a pituitary gland tumor or my medication not controlling my seizures and micro seizures where sending signals to the pituitary gland. The MRI instead of a tumor reviled scarring in my right temporal lobe, the ventricle (where the cerebral spinal fluid goes though to protect the brain and other medically cool things) has increased in size to make up due to scarring. With this information more questions have come up than answers. I believe the scar tissue is not the cause of my epilepsy but is a side effect of whatever is happening. I am still trying to figure out exactly why I have epilepsy in the medical terms. Regardless, there have been medication changes and more depressing times (I confirmed, one medication makes me emotionally wacko) but I pull through. I have tried 4 medications, sleepiness still won’t go away, so far and I think I found the one that will control me as I have been seizure free for 4 months to date. However, the nausea is something I am trying to deal with. Plus too fast be natural weight gain is going to be a pain, but I will pull through. I am very open about my epilepsy and I am not afraid to talk to my employers, friends, acquaintances or strangers at times to educate them. I started doing YouTube videos about my epilepsy in attempts to help others going through hard times or changes in their life made more difficult due to epilepsy. I also want to set up local support groups. Not 100% sure how but I know I must do it! My ultimate goal is to help people out there, like my then best friend did for me years back; to be able to pull through to live life for the better. We are not alone no matter how dark it may seem. I know how that feels. I was there not even 3 months ago. Like in 2007, I am still learning to accept who I am and all the drastic changes in my life. The best past is I am not letting what my neurologist – at the time – told me bring me down; that I would not make it to 30. I am looking at it in a positive way. My epilepsy has expanded my horizons and taught me to be so much more than I ever could learn if I had stayed "normal." I am an open book with nothing to hide, have an open mind, an open heart, and I am not afraid to die permanently. This, for me, is all borrowed time. I have a new life to live to the fullest each and every day. I won't waste it in something I do not like to do. My dreams of and for tomorrow are even bigger now than they have ever been. P.S. I will be having a HUGE 30th Birthday party when the time comes around. Should I send an invite with a note that says "YOU WERE WRONG!" to that neurologist?