November is Epilepsy Awareness Month. Otherwise known as a seizure disorder, epilepsy is a neurological condition characterized by excessive or abnormal electrical disturbances in the brain.
I had my first grand-mal seizure at age thirteen and am now fortunate to maintain a mostly seizure-free life through medication and healthy lifestyle choices. The life of an epileptic is marked by unpredictability and (for me, at least) a quest for freedom.
Your body and brain is a battlefield where you battle yourself, with no winner or loser, engaged in a constant balancing act. I can literally feel my brain tingling at times, learning, as it dances towards the edge of the abyss. There are dozens of different types of seizures, most of which occur while fully conscious, including déjà vu. It feels like I have access to the greater mystery of life or collective unconscious, but it comes at a price. Epilepsy distinctly imbues my perspective as an artist and filmmaker, as the world is seen and experienced differently, and I wouldn’t change this gift for the world. On the flip side, I can also be extremely analytical, detail-oriented and function at the executive level, so, you see, there is no generalizing the condition.
Recently, I discovered that Prince was born with epilepsy. We all know that Prince is indescribably awesome, but understanding the high obstacles he surmounted to achieve his accomplishments only makes me love him more. Although many other greats had epilepsy (Julius Caesar, Dostoevsky, Van Gogh, Alexander the Great, and Napoleon, to name a few), Prince waited until later in life to open up about his epilepsy. I understand why he waited; It’s unnerving to expose this vulnerable side to the public. Epilepsy is generally misunderstood, and has a terrible history of stigmatizing people (epileptics were among those targeted by eugenics), that epileptics might wish to protect their privacy and health from public scrutiny. We may have an inherent need to serve as our own primary protectors. I know my ability and worth, and don’t want epilepsy to unfairly prevent me from being hired for a job. I have also empowered myself to a point where I can speak about it, and hopefully facilitate more understanding and support. After being teased as a kid, Prince threw himself into writing music, and eventually people took notice… not of his seizures, but of his art. Prince said, “Once I got that support from people, then I believed I could do anything,” he said.
The truth is, that if you can survive epilepsy, you can do (almost) anything. For me personally, I have adapted to it for so long, that I’m simply used to living with it. When offered a production job with crazy hours, I am upfront about my limitations. I can’t drive too early or too late, and am unable to work graveyard shifts. My good friends are aware of my condition and are very supportive about any limitations. Has this prevented me from getting jobs or payment? Yes, but it’s my reality and I am adaptable. My ambitions are simply way higher than what I can physically accomplish, and so this requires not only endless adjustment, but also exquisite patience. It also may take me longer to find my exact place in my career. It may also result in truly unique art. I wish that more high profile celebrities, like Prince, would publically address the realities of their condition. There are countless others with epilepsy who might find the courage, strength and will to pursue their goals, despite their limitations. If, as an epileptic, you’ve achieved your health goals (seizure-maintenance) and can focus on career aspirations, then you’ll find that both worlds have to work together. Whenever I failed to keep my health in check, even if years had passed seizure-free, and decided pulled a series of all-nighters in the editing room, it always ended badly.
Epilepsy and ambition is a paradoxical cocktail, especially when mixed in the entertainment industry.
It’s an incredibly difficult condition to manage in the normal world, much less the generally unhealthy world of film production, which is marked by all the triggers epileptics are supposed to avoid. Triggers include stress, lack of sleep, poor diet, physical overexertion, overexposure to the elements (including sun), stimulants (including caffeine or nicotine), and alcohol. We can manage seizure disorders by emphasizing a healthy lifestyle, adequate sleep, and avoidance of seizure triggers.
For me, because my medication keeps the seizures mostly under control, I do my part to keep a balanced lifestyle. I’m not particularly vulnerable to having a seizure from a single trigger, but if multiple triggers are happening at once, that’s a problem. After years of dissatisfaction with my more Western doctors, I finally found a neurologist who incorporated Eastern techniques into his Western clinic, with insurance-covered therapies such as massage, Reiki, and even life-purpose seminars. What a beautiful holistic approach to treating this chronic illness. I have always felt like my own best advocate and caregiver, and am a star patient who is highly knowledgeable and well-informed. You have to be.
Epilepsy has fundamentally changed who I am and how I live my life. It’s forced me to place my health as my number one priority.
There must be other epilepsy warriors working in production who are challenged every day to balance their health with career and passion. Film production is not the ideal career path for someone like me, but I’ve done my best despite my limitations and focused on writing, producing, directing, paralegal work, and non-profit management in my long game. I know myself extremely well. It’s not hard to communicate these needs, and it’s not selfish to put those needs first, because this is a life or death situation.
If I can do it, anyone can.
Just last month, I finished principal photography shooting for my debut feature film “Red Star.” I made my award-winning graduate thesis film “Bettina in the Fog” featuring a female protagonist with epilepsy. Happy to report that I remained healthy throughout both productions, which is truly the most important thing. I am dedicating this article to the countless people working in the entertainment industry living with this invisible illness. You alone know how hard you’ve worked. I honor your strength and wish you good health.
Watch Michelle’s film about epilepsy here: http://michellekantor.com/portfolio/film/bettina-fog/