Disability #9 - Epilepsy

Epilepsy is a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain. Epilepsy may occur as a result of a genetic disorder or an acquired brain injury, such as a trauma or stroke. Individuals with epilepsy undergo seizures. During a seizure, a person experiences abnormal behavior, symptoms, and sensations, sometimes including loss of consciousness. There are few symptoms between seizures, however seizures cannot be controlled and happen involuntarily. 

Stigma is commonly experienced, around the world, by those with epilepsy. It can affect people economically, socially and culturally. In India and China, epilepsy may be used as justification to deny marriage. People in some areas still believe those with epilepsy to be cursed. In parts of Africa and Asia, such as Tanzania and Uganda, epilepsy is incorrectly claimed to be associated with possession by evil spirits, witchcraft, or poisoning and is believed by many to be contagious. Before 1971 in the United Kingdom, epilepsy was considered grounds for the annulment of marriage. The stigma may result in some people with epilepsy denying that they have ever had seizures, which can be very dangerous. Epilepsy is a fatal disability that presents itself without warning, and it is important that it is treated. Individuals with epilepsy can carry out daily life, but seizures can occur very unexpectedly. 

For Barbara Buoy, acceptance came with her epilepsy in her family and community, as well as affecting her hopes for the future. She was officially diagnosed with epilepsy when she was 18, however had seizures prior to this. She recounts her memories, when "at age 14, I remember standing in my bathroom admiring my cute new haircut, then coming to with a large lump on my forehead from blacking out and hitting my head on our porcelain sink. At 17, I remember standing in my bedroom getting ready for work and then lying on my bed looking up at my uncle, who had come to pick me up, and being unable to recognize him. I have no memory of what happened in between." Since being diagnosed, she has finished undergraduate and graduate school, drove a car, got married, had a baby, traveled alone internationally, rode the bus alone across the country, got divorced, participated in half-marathons, and moved by herself multiple times within the United States. "In other words, I lived life." Since then, she's also had grand mal seizures in hotels, on an escalator, at two jobs, in the airport, at her in-laws house, at her house, at her mom’s house, in the elevator at college, on a moving treadmill, and while she was pregnant. "In other words, I lived life with epilepsy." As for acceptance of her epilepsy,  despite her unconditional and unashamed acceptance of her epilepsy early in life, her mother never felt the same way. Barbara's mother passed away a few months ago, and Barbara is almost positive her mother never told anyone that her daughter had epilepsy. She says there is still shame and misunderstanding in some parts, but definitely not all, of her community. Her mom would proudly say that she never told anyone, especially members of the family church, about her “falling spells.” Her mother prayed that Barbara would eventually be cured. However, none of that bothered Barbara. Barbara says that she hopes that someday there will be the same level of research funding and publicity as breast cancer or MS, and less fear and stigma. She says that each of individual with epilepsy "has something unique and beautiful to share with the world in spite of — or perhaps because of — our epilepsy."