Family life is altered when a sibling is diagnosed with epilepsy. I know this because for twenty plus years my brother Andrew has lived with epilepsy. He was diagnosed during our elementary school days. Looking back I can see now that I did not grasp the implications of what this diagnosis would come to mean for my brother and our family.
I can still remember the first sign that Andrew may have epilepsy. It was morning and we were getting ready for school. When Andrew walked into the kitchen for breakfast, he appeared normal, but when he opened his mouth to speak, nothing came out. We could tell he was trying desperately to say something to us. My mom became hysterical and called my dad at work and told him to come home now because "Andrew can not talk anymore." While my brother's muted state seemed to last for an eternity to us, in reality it was only a few minutes. After several days of undergoing tests, MRI's, EEG's, and CAT scans, Andrew was referred to a neurologist, and was eventually diagnosed with a seizure disorder. While we were thankful that the doctors were able to answer the question of why my brother could not talk that morning, no doctor could prepare our family for what lay ahead, much less predict what life would come to look like for Andrew. All we knew was that overnight, we had a family member with epilepsy.
Andrew's epilepsy is the result of a head injury. Since his disorder is not genetic in origin, no one in our family had any understanding of what life with epilepsy should be. This ignorance on our part brought on an unhealthy dose of denial, and for many years the family continued to treat Andrew as if he was not living with a severe, life-changing disorder. While this was a well-intentioned response, intended to provide as much of a "normal" life as possible, it tragically resulted in missed opportunities to advocate on my brother's behalf.
Over the years, Andrew has been on countless medications, seen a myriad of doctors all across the nation, and had the Vagus Nerve Stimulator (VNS) implanted. Yet none of these endeavors brought our family the answers we were seeking. More disquieting is the fact that these efforts have done little to relieve Andrew of seizures. He continues to suffer from a wide spectrum of seizures that range from the merely annoying (absence seizures) to the severely debilitating (grand mal / tonic-clonic seizures).
For many years, I watched Andrew struggle through college as he worked diligently to achieve his goal of obtaining a degree in computer science. Sadly, after nearly a decade of fighting for this dream, it became apparent that Andrew's seizures were creating memory problems and learning challenges that were insurmountable. It was not for lack of effort trying when he reluctantly gave up on college and returned home to live with our parents and work in the family business.
Despite the many miles that separated us, I knew my brother was not content with this life. He simply had no fight left in him and thus had resigned himself to the idea of living at home with our parents. Realizing that my ever-persevering, never-complaining, big brother would not live a fulfilled life without someone advocating on his behalf, I decided it was time to step up to the plate and help him set up the independent life in Tennessee that he wanted.
I had no idea that advocating for him would turn out to be my full-time job for a few months. Yet, the journey towards independence for Andrew turned out to be no small task. Trying to find suitable work for a person with epilepsy took many months. We were finally able to obtain employment assistance through Vocational Rehabilitation services. After completing the application process and testing regime, Andrew was assisted in finding a job, and was off to work! However, a few weeks into Andrew's employment, we faced second challenge in the process: helping Andrew to keep his employment despite having a seizure disorder. Andrew was "dismissed" one month into his employment due to having a seizure on the job site. Andrew was crushed. He loved his job about as much as his new found freedom. I was shocked by the blatant discrimination and lack of willingness on the part of the employer to receive training about epilepsy. This resistance from the employer continued for several weeks. Finally, after several phone conferences, face-to-face appointments, and letters from the neurologist, disability attorney, and me, Andrew was finally reinstated in his position.
Advocating for Andrew has taught me much about the lack of understanding and knowledge about epilepsy among most people. This lack of knowledge has created a culture of fear. Most people with epilepsy are able to work productively at full time jobs, in the face of an employer's fear of liability, little value is placed on this fact. Fortunately, my brother is a living testament that an employer's fear of liability is not a valid reason to avoid hiring people with epilepsy.
Today, at the age of thirty-two, my brother is successfully living on his own, for the first time in his life. He lives in a downtown apartment on the bus line, in a metropolitan city. Andrew's freedom has given him a new lease on life and he is happier than I have ever seen him. And I am happier because I have been reminded that epilepsy is a family challenge, not one that any individual should be left to bear alone.
Written by: Kristie Wilder, a local social worker, advocate and law student. Currently, Kristie is an adjunct professor at Southern Adventist University, in the Department of Social Work. Picture at top is of Kristie and Andrew in 2009, at Kristie's graduation from the University of Tennessee, where Kristie obtained her M.S.W.