I was born 30 years ago with my umbilical cord rolled up around my neck twice, all blue, and quite a big head. My mother noticed early on lots of shortness of breath and cramps. I had my first tonic-clonic seizure when I was 18 months while my father was taking some photos in my grandparents’ garden. I went to the regional children’s hospital for my first stay, and shortly after this episode, I was diagnosed with epilepsy. I began to take medication and was experiencing mood swings and long absence seizures. The neurologist also found I was cognitively precocious and I entered school at the age of two. One year later, I had the first signs of puberty and became aphasic.
The disease and treatment tired me to such an extent that the doctors decided I should go to school only for a part-time education. I began to have strong rages and my older, who was seven, was told my behavior was not directed against my family but was something epileptic children experience. She had to look after me at school breaks. I did not want to speak to other children. Around the age of six, I became insomniac and had bulimic episodes that drove me several times to the hospital in emergency. I began to see psychologists and had speech therapy every week in addition to my monthly neurologic check-up. My mother had to stop her work to be present at my side.
Then, my parents divorced and my father raised us. He believed medication was not the solution and decided to reduce it as well as the hospital sessions. He believed I should discover happiness by having more entertainment and affection. I began to speak without trouble. We were living in a gorgeous area in the south of France where I had long walks and moments of contemplation. My father is an artist and taught me to paint.
The frequency of the seizures reduced considerably for a few years. I entered the college and was amazed by mathematics and painting. I was again advanced at school and wanted to study architecture. But with puberty, my laughing seizures intensified and I had to be under therapy again. I went to part-time study and could not follow the program. The college called my family many times to take me home because I was unable to speak or move after long episodes of laughing seizures. My level in mathematics lowered. I had to change my plans. I began to hear from other teens that I had a ‘spell’, ‘was a junkie’, but still had friends who cared about me.
I learned by a TV show that some epileptic patients could have surgery and asked my neurologist whether I was eligible for this option. She told me surgery was still at its beginnings, but we could do a precise MRI to determine whether it was feasible. Surgery was safer when you can locate a tumor. I was 14. The MRI confirmed the HH diagnosis, but I had no explanation regarding the specific effects of having an HH.
She told me to wait one year before making a final decision. During this time, I was followed by a psychiatrist who taught me to hide my troubles in order to be at ease with my peers, and advised me to spend more time with them instead of risking surgery. I began to travel, camp, and attend some music festivals. I forgot my medication many times, and after one week where I completely forgot it, I began to feel better. I called my doctor who said that some patients have fewer seizures without drugs and we decided to stop it little by little.
I earned my ‘Baccalauréat’ successfully and was admitted to University. I failed my final exam many times and it threw me into a deep depression, including suicidal ideas and anorexia. I decided to work in manufacturing to pay my studies. I became burned out and developed insomnia that no drug could fix. I remember spending several consecutive nights without sleep. My rage disorder increased and the bulimia came back. My mother, scared, drove me to a clinic where I spent the summer. I was 22. She asked me not to come back home.
After this summer, my best friends offered me accommodation in Paris to push my career from handy-work. After five years of menial jobs, I entered into a financial group in 2008 explaining my seizures and short-term memory troubles to my colleagues at the first interview. They trusted me.
Consequently, I could manage my seizures easily in public. I had little disorders linked to the tumor but felt strong enough to become pregnant. My daughter, Manuela-Alicia was born on January 2, 2010. She became aware she had a strange mom when she was one, and she showed it like she could: refusing to eat when my eyes were contorted or shouting: ‘Muuuuuuummy- Muuuuuuumy’ when I read a story and stop suddenly.
For her I thought about the surgery again. I went on the Internet and found a large amount of patient feedback. I understood the technology had progressed significantly during those last years. I underwent the pre-surgery medical process which was easier than I thought. The resection happened last January. I am now discovering a balanced and peaceful life. I have no more bulimia, insomnia and mood swings. My daughter feels happy at my side. I gained weight but could lose it easily when I feel ready. The only remaining thing is the absence’s (staring seizures) episodes. I am planning on attending a professional school of finance next year, and maybe, have a second resection to be completely cured, which seems to be possible in my case.
