“Good morning, mom,” I say as I head for the kitchen beginning my daily get-ready-for-school routine. As an active 15-year-old, I am a hyper little girl, below average in size and full of dreams. My thoughts the past few months have centered around getting my drivers license, my Step Dad has promised me a convertible Volkswagen Cabriolet as reward for my grade point average never falling below 3.8. Life is so good, I am on top of the world every moment of every day and still I reach higher.
Nearly halfway to the kitchen and in an instant my life changes forever. No warning, no symptoms, no history; I just fell unconscious. My last memory was of an upright view of the living room, why am I on the floor and why is Mom crying? I am in a daze, nothing makes sense right now and I have never been so scared.
They say life is full of change and that each day is the first day of the rest of your life, the scene I have just described was the first day of the rest of my life as a disabled person. I went on to have nearly a dozen petit mal seizures that day alone and it truly only got worse. I remember my first doctor appointment, I had never seen a seizure, never heard of this before. The doctor we went to was less than professional when he told my mom, “It’s normal for teenage girls to pass out”. Without a second thought or any tests he went with that theory and sent me home to be “normal”, passing out about every 10-30 minutes.
It wasn’t too long before my mom couldn’t stand it, her perfect little girl had become a shell of a human. I had missed weeks of school, my grades were dropping and I looked like I was cheating death. Having that many seizures in a day is too much for the human body and mind to handle. My mother made me an appointment with another doctor, the only other doctor in our small town. While in the waiting room waiting to be seen it happened again, I had a seizure with doctors and nurses as witness. This was the most embarrassing moment of my life at that point but it did make them take it seriously. The doctor carried me into his emergency area and immediately got on the phone to the hospital. I was admitted and transported directly to what would be my room for the next week.
During that week I was put through scores of tests and constant observation, I also learned many valuable lessons. I met with different doctors every day, some very polite others who needed to take a class on the subject of bedside manners. One doctor in particular came into my room, riding so high on his horse that we couldn’t see his head through the clouds. He had a holier than thou, look at my degree attitude from the start and was sure to point out his accomplishments. His degrees did not give him the good sense not to kick my mother out of the room and tell me that my family loved me too much and this was the cause of all my troubles, he also told my mother the same thing and advised her to not show me so much affection. I only hope that he was the only graduate from the medical school that taught him that because the world doesn’t need any more like him.
It was my third day in the hospital when a new doctor entered the room, I had no idea this man would become a part of my everyday life as I traveled this new road. As he introduced himself I was beside myself, why was a “neurosurgeon” coming into my room and why did I need a specialist to come from an Epilepsy clinic in Little Rock?
My eyes filled with tears as I watched my convertible race past my reach and my dreams shattered into a diagnosis.
The remainder of my hospital stay was about teaching me how to live with a seizure disorder, day in and day out I was educated. I learned what a seizure was, what to tell my friends and family, and above all I learned that I was now disabled. The doctor explained the driving laws regarding seizures and verified my greatest fear, not only would I not be getting my license this year but I couldn’t get it until I was “seizure free”.
All of the education in the world could not have prepared me for what was to come, although I knew all the medical mumbo jumbo I still felt clueless. I began taking Dilantin to control the seizures and traveling to Little Rock on a weekly basis for blood tests and follow up appointments. The medication slowed my seizures down but did not control them and I continued to seize daily. Feelings of hopelessness and fear consumed me and I grasped at any sense of normality I could.
I was barely 16 when I found out I was pregnant, it was almost a relief when it happened since it meant that I was still somewhat normal. I could still offer the world something and that was what I needed to know. My excitement and love for the child I was carrying was immeasurable and I felt as though life could go on. The doctors feared the worst due to the high levels of medication I had to take and I was on high risk status. I was determined to not let this get me down, I was going to bring a healthy baby into this world despite my disability!
I had just entered my second trimester when I got out of bed only to fall to the floor in pain. What was that? Was pregnancy supposed to hurt? It was about 20 minutes later when I re grouped and went to the restroom, I knew I shouldn’t be bleeding.
The ultrasound picture was fuzzy, I couldn’t make heads or tails of it but somewhere in that picture was my child. I focused on the warmth of the ultrasound gel as the technician turned the screen from my view, she asked me to lay still while she got another doctor. When the second doctor entered the room and stood staring at the screen I questioned him, can you tell if it is a boy or girl, is my baby OK? I thought it was a little strange that he remained silent, why wouldn’t he answer me?
As I lay on that hard table, a 16-year-old girl with no one to lean on, the technician and doctor told me what they saw. They were looking not at a healthy baby thriving in it’s mothers womb, but that of an embryo that no longer had a heartbeat. “It hasn’t developed in about 2 weeks”, they say as they attempt to explain the death of my child. I was not sure I was mature enough to handle this on my own, I needed my mom. I had tried to be grown up about the pregnancy, needing my own mom was not a good indicator that I could mother a child. It was no longer a pregnancy though, it was a death and under those circumstances I could ask for her.
I now had to “give birth” to this baby, knowing that I could never hold it or know it. They did not do anything to aid in the natural passage of this foreign object in my womb, my levels were dropping and it was safer to let me do it naturally. It took a little over a week before it was released from my body, a week of hell I called it. I would have nightmares for years to come of the image of my child. When I was told that it was the seizure medication that killed my baby it crushed me. This was all my fault, I was sick and took these pills so in a sense I killed the baby. I couldn’t bear to take the medication any more, it made me sick just to open the bottle but not taking it was life and death.
The doctors decided to put me on a seizure medication called Tegretol, it would be the safest choice should I ever get pregnant again. All we could do was hope that this medication would control the seizures.
As it turned out I would spend the next two years going from one medication to another, trying any combination that may offer some benefit. My seizures seemed to be uncontrollable and by then I was having grand mal seizures. I had quit attending school all together because I couldn’t get through the day without going into convulsions during class. I didn’t have not one teacher who was interested in learning what to do, they would just send me home. I lived in walking distance to the school so I would find myself walking home in a daze, confused and in severe pain after every humiliating episode.
I was granted SSI disability when I was 17 and was now “legally disabled”, still unable to drive or even function without help. I was due to be married the next summer and was still grasping for something normal. In hindsight I guess that is probably why I got married and started a family so young. I conceived my second child at 17.5 and experienced my first live birth at 18. I had created life, and he was perfect!
I was a mother and a wife as soon as I was an adult, and with the birth of my son came a new step in my life. My seizures stopped the day he was born, they remained controlled completely for a long time. I remember thinking I may have had a couple petit mal seizures during my seizure free period but I was in denial and never would have spoken it to a soul.
At 21 I applied for my drivers license and got it, what an empowering feeling that was. I immediately got a job and called SSI to inform them that I was not disabled and didn’t need their services any longer. To be so naive, so young and full of ideals can be as bad as it is good. I was able to stay in the workforce for the next 4 years, I maintained at the least.
With my last pregnancy came trouble again, I began having regular grand mal seizures and they were much worse than before. I was no longer a functioning member of society and didn’t know how to deal with it. I was now a mother of 3 with a haunting past, and I was trapped in an abusive marriage. I guess I always felt trapped but now it was overwhelming, I no longer wanted to live in this cruel world. The abuse that I endured at the hands of my husband must have been my fault, I owed it to him for being sick and putting him through so much.
It is amazing how we can rationalize the most irrational behaviors when we need to be needed.
At this point I still had no answers as to why I had these seizures, the specialist had said that sometimes the trauma is so deep in the tissue they don’t see it in standard tests. I had given up my disability and could no longer work, the financial strain was intense. My family lived for 8 months with no electricity and barely enough food to feed the kids, we were levels beyond poor. Our final income for the first year I was unable to work was a meager $6,000, that supported a family of 5 all year. Arkansas had no programs in effect that would help me because I was unable to work and I was left unable to even see a doctor. My family had no choice so we packed a suitcase, sold our little piece of dirt in Arkansas and moved to California. I knew I could get medical attention in California, the best available I thought. Never again would I be sent from the emergency room in a wheelchair because I was seizing with the doctor on call telling us he could do nothing!
We moved into my Dad’s tiny house and began the process of starting over, at least we had electricity and running water. I fought for 3 long years to get my disability back, it took my almost dying for the approval to happen. Even in California with all the best care I was undiagnosed and a mystery to the doctors. I saw every specialist they could get me in to, and I was in therapy for my mental instability which had become so severe in the past few years that I was afraid to even leave the house. They say that it is common for seizure patients to suffer depression, I wonder why? Your whole life is turned upside down and this evil disease consumes every breath you take, answers are few and far between and you are supposed to press on with a smile….
Moving to California not only afforded me the best medical attention, it also gave me hope. I was now back in my stomping grounds and no longer felt trapped. I remember the exact moment that I told myself, the abuse stops TODAY! I had plenty of family and friends that were there for me and I knew I would never truly be alone, it was the power I needed to become active. With fear swelling in my throat I asked my husband to leave, to go back to Arkansas and await divorce papers. It was a moment of clarity and power for me, the first in quite some time. I realized the day he got on the plane that I could, and would survive without him. I can never give enough thanks to the friends that helped me through those times and still stand by me today doing battle for me.
I had felt powerless because of my disease, when in reality my disease is what finally gave me power. As a single mother I got the chance to see first hand that although I was disabled, I was not unable. Looking back I can see that it was the seizures that made me marry him, my seizures that made me stay, and finally my seizures that allowed me to leave.
I will never say that one day of living with a seizure disorder has been easy, what I will say is that you never have to let it define you.