Sam Inglese: Greeting Epilepsy

Sam Inglese is a Producer / Director with Ambitious Minds Productions, and his documentary “Spirit of a Subculture” about Chicago bike messengers was aired on WTTW/PBS in Chicago. Sam currently lives in Boulder, Colorado, and he has had epilepsy since age eighteen.  He submitted his story to Seize The World in order to raise awareness about his own personal experiences with seizures, and also to generate support for his new project to film a documentary about epilepsy, tentatively entitled “Greeting Epilepsy.”  Please click here to view a short preview of the film.  

I’m forty-seven now with seizures since I was eighteen. I think they started in college while playing racquetball in an enclosed court. I had always had some sort of issue, focus wise, in small enclosed spaces and had always tried to play on the courts with the 4th wall being Plexiglas giving a sense of open space. I was waiting for serve when I went blank. Next thing I knew I was outside the court sitting next to the ambulance gurney waiting to be lifted up and taken to the hospital. I had a giant sore on my forehead and my opponent/friend said I had had a seizure. The next one I was aware of didn’t occur for six months but as I grew older, they became more frequent and varied in type.

My love has always been acting, of all types, and by that point had performed in over 20 musicals and shows live on stage. As the years went on and the severity and frequency of my seizures increased, I became less confident about live performances. I had a surgery to implant a Vagus Nerve Stimulator, but it stole my ability to sing my wonderful Baritone-Tenor and Falsetto range.

I pushed forward, though, and tried my best to live a normal life. I even got married and had two kids, and for a time it seemed like everything was on track. But then I reached a point where I was having as many as ten seizures a day, and the concept of “normal” became impossible. The stress of multiple seizures every day piled on top of other challenges and difficulties in my life, and eventually it became too much for us to handle. We decided to divorce.

Even during times when my seizures have been less severe, occurring on a weekly basis, it has been very difficult to hold on to a job. Although it is technically illegal to fire someone for epilepsy, the laws do not help me very much because it hardly seems worth it for me to take legal action to defend a job where I wasn’t earning much, or that was only part time to begin with. The problem is much more related to education and awareness: too many people do not understand epilepsy or know how to trust or work with somebody who has it. As odd as it may sound, I have taken inspiration from this in my work as a filmmaker, which is largely based on raising public awareness about epilepsy.

Now I am writing and producing. I produced my first documentary when I was in Chicago, working as a Bike Messenger. It was purchased by the Midwest-PBS station for a year. Now I am searching for funding to produce a new film, tentatively called, “Greeting Epilepsy.” The film will be a documentary designed to catch the eye not just of the epilepsy community, but also of the of the wider general public. Productions for the screen about epilepsy have traditionally been about neurologists and medical statistics, and about the history of epilepsy as a disorder.  While these subjects are interesting to the epilepsy community, they are usually of little interest to the general public.  That is why I want to share the personal stories of those of us who affected by epilepsy. I intend to attract and thus educate the rest of the population by producing a documentary about us and that is not strictly limited to medical topics. No doctors, no medications, no numbers. Just us and our stories. My vision is that each person in the documentary would share the story of one seizure: whether it was a seizure that they had in public, or a seizure that was particularly challenging or difficult, or whether it might have led to positive change. I believe that each seizure is unique, and that the events surrounding it are significant as are the reactions of those who are there to see it. If I can capture those stories on film and share them with the world, I will introduce the public to the incredible array of seizures that exists and I will be able to show the world that seizures are around us every day. The film would also show people how to respond, and how not to respond.

I am also working on another creative project, a screenplay, which was originally a romantic comedy about a young man wary of long-term commitments. I always felt there was something missing in the story, and last spring, when I revisited the screenplay, it clicked: the missing element was epilepsy. Seizures are only a secondary part of the script, as the main characters are not ruled by their seizures. The audience thus is entertained and educated, and they see that the characters are not controlled by epilepsy. The screenplay is 75% complete and I hope it will attract major producers because of its fun storyline. And I really like the idea that epilepsy will add a strong human element that is very personal for me.

I am very excited about these two projects, and would welcome any ideas or suggestions for how to get them up and running. I will plan to promote my documentary on Kick Starter, a creative fundraising website where people can donate as little as $10 toward the production costs. This is a very exciting time for me, and I would welcome your input about how to make this project a reality. Please e-mail me with any thoughts or to share your own story if you would like to be a part of the film.

To learn more about Sam Inglese’s project, please email him at Ambimind65 [at] yahoo.com.