“Telling a Story Without an Ending”
By Josh Taub, director of the documentary Bernadette
When I first began capturing Bernadette Scarduzio on camera, there was really no concrete idea for a story. I just found her to be funny, witty, beautiful, and living a life full of drama. There was always some cliffhanger about a love interest, a roommate gone bad, or scandalous family drama. Bern suffering from a neuromuscular disorder had nothing do, in my opinion, with her draw as a character. She has the coveted “it” factor; a cornucopia of qualities that fit together perfectly in a way that is practically indescribable, yet for a director, very desirable. Charcot Marie Tooth disease (CMT) simply gave Bernadette an aesthetic that made her life even more impressive than it already was.
After knowing Bernadette for about 5 years, I finally decided to pick up a camera in 2008 and start shooting. The first day of production (if you could even call it that) was on her front porch. I just sat there with my outdated camera, while she began to pour out the facts and stories of her life. Looking back on that initial day, I realize B and I were in the same position. We had no idea where the hell this idea was going to take us, but we knew it felt right.
My background had been in television, so my perspective, at first, was almost from a reality TV angle. I had no doubt that audiences would be captivated by Bern’s good looks, her foray into the life of newly discovered homosexuality, her brash honesty, her support for the legalization of weed, and – oh yeah – her ridiculously incredible attitude and generosity in the face of a horrible, degenerative illness. I was following a format I knew fairly well: shoot as much action as possible and then fill in the gaps with recorded testimonial.
It was working for while. I was getting a real glimpse at Bernadette’s life, from her inner most thoughts to her most outrageous behavior. One of the most difficult shoots was when Jeff (co-producer) and I shot Bernadette’s high school reunion. It was loud, noisy and filled with tons of “inappropriate” interactions that would have had TV execs drooling. So, you can see, at this point I was not really worried about an ending for this project. I just wanted to make something entertaining and Bernadette was that key.
Then, something changed. Something big. Colossal. Bernadette’s father John passed away unexpectedly. He was a huge influence in Bern’s life. The fact that they both shared CMT gave them an extra special connection. Her world collapsed. It was devastating. When the fog lifted a bit, Bern agreed to continue filming. She was now more determined than ever to tell the world her story, and in doing so, raise awareness for CMT. Jeff and I looked back on the one and only fateful interview John Scarduzio had given us before he passed. At one point he says that Bernadette“will one day become the face of CMT.”
Now, you might think “BAMM!” – there is the premise for the film. Well, you are right, that did become the overall theme. But, believe it or not, we didn’t know it at the time. I did come to the conclusion, at that point, that this project was only suited for one purpose: the first ever feature film on CMT. There may be moments of comedy and reality-style entertainment, but this piece was going to be a heartfelt look at the life of one woman’s struggle with CMT. John’s passing took my trajectory in a whole new direction. Soon I stopped doing so many testimonials. I let go. I let the story of Bernadette’s life unfold before me and I stopped trying to make the story happen by setting up shoots with overly preconceived ideas. But how far would this go? What would be the ending to this tale?
About a year or so into the production, an amazing thing started to happen. We had put a trailer for the film on youtube and started buzzing about what we were doing. People began to reach out to Bernadette and give her praise for what she was doing. She was becoming an inspiration for others. People wanted to meet her, be her, know her. The Hereditary Neuropathy Foundation began to show interest in making Bernadette a spokesperson. Before we knew it, a real story had emerged.
By the end of 2012, we were putting the finishing touches on the film. The story of Bernadette had truly revealed itself. From living in obscurity to rising as the face of CMT, Bernadette had transformed. Truth be told, we could have kept going. Bernadette continues to rise in notoriety amongst the CMT and mainstream communities. I always thought the culminating moment of the film – if I had my druthers – would have been when she got to walk onstage at Ellen or sit down for a chat with Oprah. Hey, it could still happen. At some point, though, you have to just realize that unless you follow someone to into the afterlife, the story will never truly end. It goes on. Endings don’t exist. We create them.
BERNADETTE is the story of a young woman who found her calling as the voice of a hereditary disease known as Charcot Marie Tooth (CMT) after her father’s passing. With her family by her side, Bernadette struggles to keep up her spirits and her strengths as a voice for millions of people silently suffering from this misunderstood affliction. The film is available on DVD HERE. It is also available to stream on HULU, AMAZON INSTANT or CINEMA LIBRE ON DEMAND. To learn more about CMT or to donate to Bernadette’s cause, visit the Hereditary Neuropathy Foundation.