My son’s birthday.
Christmas Day.
My tenth anniversary.
The Fourth of July.
Last Wednesday.
Today.
These are some of the recent days in my life that have been interrupted by seizures.
Until recently, the story of my epilepsy was 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. 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.
For years, I focused on hiding my symptoms as much as possible. In a world where there are still many misconceptions about seizures and epilepsy, I found others squirming uncomfortably when I confessed that I continued to have uncontrolled seizures. I noticed colleagues changing the subject quickly when I mentioned epilepsy. Anytime I felt the characteristic aura of a looming seizure, I’d search for a safe place to sit and hide in case my simple seizure generalized 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 over excitable 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 multiple medications and medication combinations for treatment of my seizures. I endured seizures and side effects through college, medical school, and through the beginning of my pediatric residency. Finally, in 2003, during the second year of my pediatric residency training, I had a temporal lobectomy to remove the area of my brain that was damaged years before. 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, my seizures were back. Despite the fact that others couldn’t see outward evidence of my epilepsy, it was (and is) my constant companion. Frequent auras reminded me that the threat of having a seizure was ever-present. Medication-induced fatigue tugged at me like an anchor and threatened to pull me out to a somnolent sea filled with waves of persistent tiredness. At times, I felt as if I were 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 monitored my sleep, activities, and time that I take my anti-epileptic medications every day.
It wasn’t until I finally started acknowledging my struggle that I found some semblance of peace. Although I still have small seizures once to twice a month, writing about my journey has provided some solace and a modicum of acceptance of epilepsy. When my memoir, The Sacred Disease, was published in November 2015 I felt as if I was finally able to acknowledge my whole self to the world. Speaking with others who live with seizures has given me inspiration, motivation, and hope for the future of all of us.
When I was diagnosed with epilepsy, I resolved that seizures would never define me. Medications will never rule me. Despite the pulling at my anxiousness and self-consciousness, I would never allow epilepsy to dictate my choices in life. Through talking with others who live with epilepsy, I have come to realize that our collective silence in effort to avoid judgment may contribute to the unwanted stigma. I can be a doctor, a wife, a mom, and a friend despite recurrent seizures. By sharing my story, I hope to decrease the misunderstandings associated with epilepsy.
The more we talk, the more we understand.
Please pass it on.
