The excitement! The first piece to be posted on
The media is a vast and powerful tool to influence and educate the public. If used correctly, its positivity is limitless but all too often it conveys information that is detrimental.
Social media is a platform which in this day and age reaches millions of people worldwide. As a blogger, I have accounts on Facebook, Instagram and Twitter, as well as Tumblr and WordPress where Finding Freedom with Epilepsy resides. The locations of my posts reach far and wide and the number of people who view, comment and ‘like’, validate the purpose of being an epilepsy advocate. I am educating and displaying my experiences – the good, the bad and the ugly (!) – out there for fellow sufferers to relate to. It is to offer comfort with the intention of minimizing isolation by being able to connect and reach out to others in the same position. The methods of seizure control I have experimented with have been vast. Aside from the orthodox route, I have veered onto the path of alternative and complementary therapies, some successful, some not. As every person with epilepsy knows, we are all unique in our condition and what works for one person won’t always work for another. But for our own quality of life, to leave no stone unturned is something required if seizure freedom is the goal. For those like me, who use the internet as a platform to extend that knowledge and personal experience to the world, in the luxury of a café or my own home with my laptop, it is an achievement of immense proportions.
Movies are a successful method of portraying epilepsy. There was a wonderful movie with Meryl Streep called ‘First do No Harm’. The film documents a young boy with refractory epilepsy; his family’s journey with the diagnosis; the side effects of the drugs; the challenges of medical insurance when their circumstances change and their triumph with the ketogenic diet. The film was based on the director and producer’s son and it was depicted in a brutally honest and positive light. This is the key to educating people as it provides them with an insightful truth.
The film was nominated for an Emmy, Golden Globe, a Satellite Award and the Humanitas Prize. The young actor who played Robbie, the little boy with epilepsy, won the Young Artist award.
So, with all that positive press, what happens when the information conveyed is negative?
There are plenty of myths out there and we are battling to override those. The occasions that I have spoken to people about my seizures, I have received a wonderful response. When they ask what they should do to keep me safe, some reaffirm before I answer that they just need to place a spoon in my mouth – pretty worrying! Television and/or movies in particular are guilty of this. The audience that those media styles reach is tremendous. Seeing a character in a T.V show put a spoon in the mouth of somebody having a seizure is what the viewer will recall, they rarely remember the context of whether it was right or wrong. If there is no explanation that it could physically injure the individual, the prehistoric myths are compounded and the progress that we are making of eradicating stigma takes us five giant steps back that will take years to repair.
In addition to the physical portrayal of how to (or how not to) deal with seizures, there are of course the jokes.
Now, I like to be light hearted and have the ability to laugh at myself, but depending on the context it can just be inappropriate. There are many references in film and television where this occurs. There have been numerous occasions when directors, writers or producers have had to openly apologize for promoting the stereotypes that we are trying so hard to change. For comedians, we are a prime target, there’s nothing funnier than hearing a joke about seizures, right? No. For anyone who finds this material entertaining, I would offer a grand mal seizure to them and then see how funny they feel after the experience.
In a world of cellular obsession, I have stumbled across people who, rather than assisting somebody who needs help, have taken to filming a seizure for pure entertainment which then get posted on Youtube or Facebook. Are we really living in a time when we as humans have become so uncaring for our fellow man that we would use suffering for a form of entertainment rather than somebody else’s well-being?
We have a long way to go before epilepsy will be fully understood. We can only hope in the meantime, that all the media platforms with which to promote positive information about epilepsy are used wisely and those with power and influence realize our reality and join us in the crusade.