I’ll never forget the first time I watched someone have a seizure.
I was in a hotel room on a deserted floor in Chiang Mai, Thailand. I had met my roommate only 48 hours earlier on a holiday tour around Southeast Asia. We had a party on that night, we sang along to music as we readied ourselves for the evening. My roommate had just emerged from the shower. She stood in front of the wardrobe mirror and slicked moisturizer over her face. We had bought matching shirts to wear to the ‘Shit Shirt Party’ and we couldn’t wait to dance with our new friends. Midway through applying my mascara I heard something drop on to the floor. From the corner of my eye I noticed my roommate bow forwards into the mirror. Her moisturizer was strewn across the floor and she began to shake violently.
A moment later, as I took in the scene, she fell directly backwards, straight through the doorway to the bathroom. From there her entire body began to convulse and I began to scream.
As I reached her, she continued to shake uncontrollably, frothing at the mouth and rasping for breath as her eyes rolled to the back of her head.
It was a moment of panic. My screams drowned out the rap melody we had been singing to just moments earlier as I struggled between clutching at my friend and calling for help. The hotel room door would not budge as her body blocked its opening. Then, her jaw clenched shut and she stopped breathing. As her face changed from purple to stark white my screams for help continued. It was as if I was living out a scene from a horror film. The girl I had met only two days earlier was about to die in my arms. In the minutes that ticked by there was nothing I could do to save her.
Except until she came to, gasping for air.
What I had just witnessed for the first time is called a Generalized Tonic Clonic Seizure.
When I returned home from the trip I decided to conduct a little research into epilepsy. According to Epilepsy Action Australia, “A seizure is a disruption in the normal pattern of… electrical impulses in the brain, caused by the brain cells firing simultaneously at a much faster rate.” What I experienced when watching my roommate have a seizure was not something supernatural, but rather a neurological dysfunction that manifested itself physically.
Research by Sydney North Neurology and Neurophysiology has found that epilepsy is one of the most common serious neurological conditions. Around 10-12% of people will have a seizure during their lifetime, and 3-4% of people will be diagnosed with epilepsy at some point. Epilepsy can be genetic or caused by damage to the brain as a result of traumatic or congenital malformation. Causes can also include brain tumours and strokes. With such a huge difference between occurrence and diagnosis taken into consideration, it is easy to understand why epilepsy remains one of the most misunderstood invisible disabilities. Epilepsy Action Australia outlines that anyone can be affected by epilepsy, regardless of their, gender or background. It is more than three times as common as multiple sclerosis, Parkinson’s disease and cerebral palsy. So why don’t we know more about it?
My roommate, a lively New Zealander by the name of Nicola*, was diagnosed with epilepsy at the age of eleven. At twenty-three she has still not ‘grown out’ of the condition. She takes daily medication to prevent seizures and is legally unable to drive because of her epilepsy. During the trip, her use of alcohol and lack of sleep reduced the effectiveness of her medication and induced her seizure. Nicola says that she never remembers what it feels like to have a seizure, but when she wakes up she describes a feeling of confusion, “My body feels like it doesn’t want to work and I really struggle to move… [I feel] So tired. Just so tired…because of all the tensing and shaking, and then my mind, from my brain just being on complete overdrive.”
After Nicola’s seizure in Thailand, help finally arrived and a band of foreign faces stood in shock around the doorway, none of whom spoke a word of English. Despite this we all managed to move her to the bed in the hotel room where she had no memory of the incident except for the tennis ball-shaped bruise on her left arm.
Nicola remembers one of her worst seizures in high school where she fell down in front of the whole school during a game of netball, “It had been raining so I woke up soaking wet on the ground with one of my teachers standing over me and a massive group of people just staring at me.” Afterwards an ambulance was called and she was taken to hospital.
If it weren’t for another member of our tour group in Thailand enquiring about the medical bracelet she wore, I wouldn’t have had a clue that she suffered from epilepsy. Luckily, I had been warned that in the unlikely event that she had a seizure, all I could do was make sure she didn’t injure herself in the process. “As much as I try to downplay it, it is a serious illness and if you have one at the wrong time in the wrong place, it can very easily cause death.”
Carol Welsh is an Epilepsy Nurse Educator at Epilepsy Action Australia also works with the Epilepsy Clinic at Westmead Hospital. She explains,
“Epilepsy is one of the most misdiagnosed neurological conditions as it can affect so many systems and functions of the body.”
Being a disability that for the most part remains invisible, epilepsy can be difficult to identify in others. Welsh explains, “There is very poor knowledge in the general community of epilepsy. The average person in the community equates epilepsy with the dramatic Tonic Clonic seizure.”
With over 40 types of seizures, many of them being subtle, Welsh says that the prevalence of epilepsy can be equated to a spectrum of different effects. This can include impacts on the sensory system, the emotions, and the autonomic nervous system and motor functions of an individual.
With stories about epilepsy sufferers dating back to biblical days, it is no wonder that attitudes of fear and misunderstanding continue to fuel the stigma surrounding the condition. Earlier on the day of Nicola’s seizure, she and the members of my tour group had joked and shared stories of epilepsy sufferers choking on their tongue during a fit.
In the past particular religious writings referred to those suffering from seizures as being “possessed”. The Bible tells the story of a man who brings his epileptic son forth to Jesus. In Matthew 17: 14-18, “Jesus rebuked the demon, and it came out of him and the boy was healed instantly.”
Welsh believes that “The level of stigma is variable from culture to culture and within cultures.” The World Health Organization notes that marriages are commonly prohibited in India and China due to epilepsy. In the United States, until the 1970s sufferers were legally refused entry into public areas such as restaurants and theatres.
In popular culture, many horror films imitate the symptoms of a Tonic-Clonic seizure in scenes depicting exorcism or those suffering from psychotic episodes.
Sadly, this was the closest understanding I had of a seizure as I witnessed Nicola experience hers.
The word epilepsy itself comes from the Greek word ‘Seléniazomai’, which translates to ‘lunatic’ or ‘one that is influenced by the moon’. Carol Welsh believes that education is key as “The stigma comes from lack of understanding and poor information.”
The stigma associated with epilepsy can have profound effects on the mental health and employment prospects of sufferers. From her experience of working with epilepsy, Welsh says that epilepsy can have repercussions including increased chances of anxiety, depression and suicide.
Factors such as the person’s prior health issues, lifestyle, age of diagnosis, type and frequency of seizures and their response to medications can impact epilepsy sufferers. A study by Developmental Medicine and Child Neurology found that rates of psychiatric disorders in children suffering from Epilepsy are as high as 37%. This often carries through to adult life, as Welsh believes that “Many people with epilepsy do not talk to others about their condition… Some people with epilepsy are concerned about negative responses, including difficulty with employment.” This could be attributed to irrational prejudices that still exist within society and the impeding risk of having a seizure on the job, affecting safety and productivity. Additionally, issues such as alcohol consumption, the ability to drive, sex drive and self-esteem can be contributing factors to mental illness within this group of invisible sufferers.
Medication is available to help epileptics maintain control over their seizures and surgery with a success rate of 70% is accessible for eligible sufferers. According to the World Health Organization the occurrence of epilepsy in developing countries is double that of developed nations. Due to the many forms and causes of epilepsy Welsh says that there will be no single cure. However, many sufferers diagnosed at an early age can grow out of the condition or experience long-term remission.
If I could go back to that stuffy hotel room in Thailand and tell myself what I now know about epilepsy from a neurological perspective, maybe I wouldn’t have been as afraid. Fear is generated through misunderstanding. My panic was ignorance fuelled by a dense history of misconceptions about a serious medical condition. An invisible disability, many of us are unaware of those amongst us suffering from the condition but its people like Nicola and Carol whose mission to generate awareness is worthy of commending.
If you want to learn more about epilepsy…
The Epilepsy Action Australia Foundation was established in 1952. They are responsible for advocacy, conducting research and support for those affected by epilepsy and hope to raise awareness within the community. If you would like to donate or offer your support for Epilepsy Action Australia, you can contact them on 1300 37 45 37 or visit their website at http://www.epilepsy.org.au.
*This article has been written with the permission of Nicola, as she hopes to help spread awareness of epilepsy.