Carmita’s Story
My introduction to epilepsy didn’t come from a fall on the bathroom floor, or an inability to move or speak. It began with one terrifying phone call.
I was thirteen years old, spending the summer with my dad when my aunt called. My mother, Wanda, had suffered a seizure and was in Intensive Care. Scared to death, all I wanted was to return home to be by my mom’s side. However, my father did not think it was important enough to cut short my visit with him. It was the first of many times that someone would underestimate the seriousness of my mother’s struggles.
At the time of my mother’s epilepsy diagnosis, she had already been struggling with other health problems. At the age of thirty, soon after my birth, my mother had a stroke. Left permanently disabled, this was the beginning of a life-long battle including many trips to emergency rooms and much unpredictability in our lives. I never knew when I would have to call an ambulance, help my mom get to the hospital, and try to stay calm in the process. To make matters worse, we dealt with the constant stress of our dire financial situation, in part due to the staggering cost of treating my mother’s medical problems. I silently prayed for a “normal” childhood—one with a healthy parent who didn’t require me to be a mini-adult.
After learning of that first seizure and then her diagnosis of epilepsy, I had no idea what to expect. I didn’t know how my life might change. I was inundated with brochures and leaflets at the hospital describing how to cope with epilepsy. She was advised to attend a series of support group meetings at which she was repeatedly told how she could “live” with epilepsy.
And my mother did live—for the next eleven years—with infrequent seizures and a daily “cocktail” of high-powered medications. However, just weeks after her fifty-third birthday, my mother suffered two major seizures. Her body never recovered, and she passed away six weeks later.
After her death, I could never quite escape the thought that maybe something could have been done to extend her life if only there had been a focus on curing her illness rather than simply relying on pills to control it. Maybe, if we hadn’t been so accepting of the diagnosis and focusing on how to “live” with it, we would not have been so tolerant of the occasional seizures and the debilitating side effects. I believe children with family members who have epilepsy are often forgotten victims of this devastating disease. There were no support groups for me—nobody to answer all the questions or address all the fears that raced through my mind. As my mother’s only child and often the person present when she was most in need, I never felt completely comfortable disclosing my fears and concerns about her illness.
I also struggled with speaking to family about the cause of my mother’s death. Though a shock to us all, her departure was in some ways considered an inevitable ending to a long battle with illness.
I wrestled with the notion that my mother had been silently suffering for years—that her epilepsy caused her more grief than any of us knew. This was confirmed when I found a journal she had kept in the final year of her life. It was clear that she meekly, yet stubbornly, suffered from silent warning signs—loss of consciousness, memory loss—but worked diligently to hide them from me and from others. It broke my heart to feel that while I was away at college, embarking on my journey into adulthood, my mom was struggling all alone.
When I found CURE, it released so many thoughts I had held inside for years. Why did we simply accept the status quo? Why were we OK believing that the best we could do was to live with the diagnosis of epilepsy, which included breakthrough seizures and medication side effects? Why had I never heard anyone speak about a cure, or even a “race for a cure”? Why did we settle for simply pouring medication after medication into my mother in a vain attempt to control her seizures? In my heart, I knew I had found an organization that was on the right track. We can and must work together to find a cure.
My mother’s seizures should not have been treated as inevitable, just as her death should not have been viewed as inevitable. In CURE, I have found hope for all patients and family members who suffer from epilepsy. CURE is the powerful force needed to make this dream of a cure a reality.