“Shielding my brain from the thing I love most. Light.” – Tiffany Kairos
I was officially declared as having epilepsy in December of 2008 at the age of 22. So much to learn about the condition I would now be living with for however long the journey may be. A journey I was mentally, spiritually and physically preparing myself for each and every day from the moment I heard the words trickle out of the doctors mouth and into my ears settling into an understanding within me. As I journeyed learning what to do and what not to do….what to avoid and what not to avoid…. what triggered seizure activity and what what did not trigger seizure activity….over a period of time I began to notice a pattern of seizure triggers that sparked my interest. A seizure trigger that I had never thought on before becoming diagnosed. It began to show signs of being a major problem within my life. However, previous to having epilepsy, I had never had an issue with this before. What was this trigger?
What Is Photosensitive Epilepsy
People with photosensitive epilepsy have seizures that are triggered by:
Bold, contrasting visual patterns (such as stripes or checks)
Overexposure to video games
For an estimated 3% of people with epilepsy, exposure to flashing/flickering lights or to certain visual patterns can trigger seizures.
In becoming aware of this seizure trigger, it became apparent that wherever I go, my sunglasses would need to go with me too. If need be, I would kindly vocalize my request to be excused from whatever area might have lighting placing me in a dangerous situation. As time progressed, and my journey continued, I would find more examples of photosensitive trigger dangers to be mindful of. At times, friends and family couldn’t quite understand why I might be wearing my sunglasses when and where I chose to and I would take the time to explain about Photosensitive Epilepsy and how it triggered my seizures helping them to better understand.
What are some examples of photosensitive triggers?
It has been speculated that flashing lights on the top of emergency vehicles may trigger seizures in people with photosensitive epilepsy
Sunlight, especially when shimmering off water, or flickering through trees
Certain visual patterns, specifically stripes of contrasting colors
Certain video games
Television screens or computer monitors as a result of the flicker or rolling images.
I found that I myself indeed fall within all of these very triggers and more that aren’t listed above. I fell within the 3% of the 65 million plus living with epilepsy. If I’m wearing my sunglasses in a location or at a certain time of day you may not suspect one might wear sunglasses, I’m more than likely doing what is best to protect myself from seizure activity. It is not a matter of an attempt to look like a superstar or for vanity’s sake. Of course, I do love sunglasses. I’m a girl. I would be lying if I didn’t say I don’t love sunglasses. However, if it’s at a time out of the ordinary, consider that situation as a person living with epilepsy.
Not everyone will understand this because not everyone knows me and knows the condition I live with. In time, I hope to have more opportunities to speak about epilepsy, living with epilepsy and this very topic. Should situations every arise, of course I’m always happy to engage and educate about it. Epilepsy education is key to a better understanding of the condition and a shattering of the stigma.
I am a happily-ever-after wife, an Epilepsy Diagnosee, Advocate for Epilepsy Awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!