My son’s birthday.
My tenth anniversary.
The Fourth of July.
These are some of the recent days in my life that have been interrupted by seizures.
In many ways, the story of my Epilepsy is a story of disguise.
Different people can get Epilepsy in different ways. Soldiers can have Epilepsy as a result of a traumatic brain injury sustained on the battlefield. Some children may inherit Epilepsy as a part of a genetic syndrome that causes seizures. My Epilepsy was caused by a prolonged seizure associated with fever when I had a virulent case of influenza at 16 months of age. My first seizure, which lasted over 30 minutes, left a scar deep in my brain that served as a starting point for my future seizures. The complex partial seizures, or seizures that only involve part of my brain, that I have had since adolescence frequently sneak up and dance around the edges of my consciousness, stealing slivers of my alertness just enough to leave me tired and spent after 15 – 30 seconds of involuntary swallowing and clenching of my left hand. And although the partial seizures are subtle enough that only those closest to me would know something was amiss, they leave me feeling as if I have been battered, bruised, and in a fog for the rest of the day.
I have learned to hide my symptoms as much as possible. In a world where there are still many misconceptions about seizures and Epilepsy, I find others squirming uncomfortably when I confess that I continue to have uncontrolled seizures. I notice colleagues changing the subject quickly when I mention Epilepsy. Anytime I feel the characteristic aura of a looming seizure, I search for a safe place to sit and hide in case the simple seizure generalizes into something more.
I know I am one of the lucky ones. After my first prolonged seizure as an infant, Epilepsy disappeared from my life for over a decade. I had twelve years where the monster within my overexcitable brain hibernated and I was able to grow, develop, and learn normally. My brain formed new connections around the area that was damaged after the first seizure. The hormonal surges of puberty woke the sleeping monster deep within my temporal lobe and suddenly paroxysms of pulsing heat, confusion, headache, and barely perceptible movements of my mouth and face were overwhelming me ten to twelve times a day. Epilepsy was awake and it was present to stay.
Since my official diagnosis of temporal lobe epilepsy at age 18, I have tried over fifteen medications and medication combinations for treatment of my seizures. In 2003, during the middle of my pediatric residency training, I had a temporal lobectomy to remove the area of my brain that had been damaged during the seizure during infancy and the surrounding areas. I was desperate for a cure for my seizures and prayed that one day I could continue my medical training and practice unencumbered with seizures and the mind-numbing effects of medications.
The surgery was successful without complications. Five months later, the seizures were back.
But despite the fact that others can’t see outward evidence of my Epilepsy, it is my constant companion. Frequent auras remind me that the threat of having a seizure is ever-present. Medication-induced fatigue tugs at me like an anchor, threatening to pull me out to a somnolent sea filled with waves of persistent tiredness that I fight to overcome every afternoon with all my strength. At times, I feel as if I am a lone surfer in a tsunami of medication side effects, riding the sickening larger waves of dizziness, confusion, poor appetite, and headaches. To moderate the side effects of the medication, I closely monitor my sleep, activities, and time that I take my anti-epileptic medications every day. I live in constant fear that the slightest alteration in my routine will cause me to lose grip on my fragile lifeboat and drown in the angry sea.
When I was diagnosed with Epilepsy, I made a resolution to myself that seizures would never define me. Medications will never rule me. And despite the pulling at my anxiousness and self-conscious, Epilepsy would never dictate my choices in life. My husband and I have been blessed with three fantastic children (and three tumultuous pregnancies with several grand mal seizures) I have a busy pediatric practice and am able to do almost everything I dreamed of despite Epilepsy. It’s time to lift the veil and step out of the shadows. It’s time to share my story and the story of others so we can raise awareness and give others hope.
The more we talk, the more we understand.
Please pass it on.