Poland Syndrome Documentary and Me, by Woody Bavota
A really interesting documentary project investigating Poland Syndrome is being made by a man who only discovered his real diagnosis at the age of 51.
Film-maker, Woody Bavota had forged a successful career in the movie and music industries, but had never known the name of his differences until a chance meeting with a man at an airport who had the same syndrome.
Now he's concentrating on spreading awareness and knowledge about PS, which is characterised by a missing pectoral muscle and often, missing fingers, through his forthcoming documentary which will se him travel the world in search of answers.
In this exclusive article for DysNet, Woody Bavota writes about his fascinating life with Poland Syndrome and exciting plans for the documentary.
My name is Woody Bavota, I was born in 1955, an only child to two loving and generous parents. Mom worked for the Phone Company and dad worked at the Ford plant. From day one I was sheltered, hovered over and told that I was special. One day I realized that I was different, was missing a hand, a pectoral muscle and I wondered why. Mom and dad told me that God made me that way and reiterated what I had heard every day of my life, that I was special.
I believed them and still do! We are all special, unique in our own way and making the world go round in our special way. At seven I had my first operation on my hand, which was basically my wrist. They made a V in the middle, and then a second operation to deepen the V and at ten they transplanted tendons from my foot to enable me to pinch. The doctors had greater thoughts in 1965 to add a prosthesis and utilize my new pinching power to manipulate the artificial hand. I wanted nothing to do with it and told them that it would be like putting a fake hand on top of theirs and expecting them to use it or feel comfortable with it.
But what did happen was miraculous. My doctor, a Dr. Logue knew of my love of baseball and my frustration. Utilizing a right handed glove I would catch the ball, then remove the glove, pinch it under my left arm and throw the ball. Well the kid hitting the ball was already at home plate, I was always the last kid picked to play. Dr. Logue and my Dad, Woody Sr. took it upon themselves to contact the Wilson Sporting Goods Company and they spoke with the guy in charge, Lefty Nelson. Mr. Nelson immediately embraced the idea and sent a representative to meet me at the hospital. They took a plaster cast and the gentleman asked me all about playing baseball. Well, nine months of research and development in Wilson's Chicago plant produced a glove, my baseball glove. The only one in existence, indeed I was special.
With the power of this glove I went on to play both minor league and little league baseball. But the most important thing was that I became one of the guys, no longer felt like the outcast and became empowered to do, become, grow into whatever my dreams were and I did. Nothing in the world ever felt like an obstacle, I just did and became whatever I wanted without hesitation.
At fifteen I went to a Crosby, Stills, Nash and Young concert, my world was changed, I was enlightened literally. The stage lighting was a visual, an emotion that I had never seen or felt prior. Wow, I thought I can do that, I want to do that, I think I'll become that. Later that same night I went home and told my parents that I wanted to be a lighting guy. I remember my excitement and never gave up on it. Searching for lighting books I couldn't find any rock and roll books, just theater books by the likes of Jean Rosenthal, the great theatre lighting designer. So I consumed all that I could find. The very next year at sixteen I asked my parents to loan me two thousand dollars to purchase a light show.
Now you have to remember this was 1971, I was a presumably disabled kid and my parents were two working class people. But they had seen my commitment and most likely felt that it was good that their little boy had a direction. As I found out later in life that their main concern was what I would qualify to do, be in life. So I found a little entertainment lighting company by chance as I was driving by one day in a town near mine. Owed by a great guy, who was a local cop as well and he set me up with theatrical lighting gear. My dilemma was that after purchasing the lights, the left over money wasn't enough for a control board. Without a thought I got together with a friend and built one, with household dimmers and toggle switches and I was ready to rock and roll.
My first gig, as they say, was at a club called the Beach Ball in Revere. I was underage but it really didn't matter to them, because they paid me twenty-five dollars a weekend. My first show came and I couldn't have been more excited, I was flashing the lights, hitting the strobe lights, the florescent black lights and the fog machine. Directly after the first set I saw the guitarist coming over to me, in my mind to tell me what a great job that I did and he said quote, you have no idea what you are doing do you. And my response was, I thought that I did, I guess not but I'm having fun. Well he turned out to be a good person and he taught me a bit about lighting a rock and roll band.
For the next six years I lit any and every band that I could and became so good that I was the go to guy for band lighting. Being special, I knew that this would come to fruition all along. One night in 1978 I was listening to the radio and heard about a brand new group called UK. They were made up of members of my favorite groups, Yes, King Crimson, and Frank Zappa's band. Without a thought I said to my friend I'm going to work with this band, for I knew that it was time and that I was good enough. The next morning I looked on a King Crimson album to see EG Management, not knowing if UK was affiliated I called London information and got them on the horn. I asked for UK's manager and to my surprise Alex Scott, who also managed the group Genesis came to the phone. I was full of piss and vinegar and told Alex that I was the on man for the job; he kind of blew me off but appeased me with an address to forward my resume. I did and the resume was minimal with local bands, local venues but the cover letter reiterated my passion. The drummer Bill Bruford liked that and I was hired. I went on to light bands for twenty years, traveling to just about every state in the union and over a dozen countries. My friend Bill Bruford stayed true, I lit two of his bands with six world tours and after I switched careers to video I produced a concert DVD with him.
I was never handicapped in my eyes and in turn not in anyone else's. I did what I did, became who I wanted to become with out fear and all of this was made possible because I was told that I was special.
Onto my next career, video, this was a natural progression for me, having lit many concerts that were simulcast to television in Europe. I cut my teeth, if you will with film crews this way and thought that this looked like fun, I think that I'll become a camera operator and even a director. Well I did, with a bit more proper study this time, not much but I've learned my new craft well. Right out of the gate, I won a Telly award for my first production, then other awards and official selections at film festivals. I knew that I would, not out of arrogance, but because of my positive structure in life, never thinking that I was different, or better, just that I belonged.
I'm married twice with five beautiful children, seven grandchildren and my dog Spanky. Don't get ahead of yourself, I know Woody and Spanky, but he is a rescue dog and came with the name. I'm truly blessed to be with my beautiful wife Lenore who understands that in my life I need to be this persona.
My biggest pleasure in life is inspiring people to look at themselves in a positive way and to let them know that they can become whatever they believe that they can become. I do this in my daily life and believe it or not on Facebook. I receive emails and messages thanking me and I think for what, this is my passion to shine the beauty of life onto people to let them know that they are special!
After a friend of the family committed suicide I wrote a screenplay called Power of Purpose. It is a melodrama with an underlying theme of suicide prevention. Three years into rewrites, talking with producers etc. we are getting close but it has not been made as of yet. Indeed the screenplay has already affected many lives in a positive way. Actors, others in the film industry and just people have heard about it, read it, have emailed and phoned me about their suicide stories. Mothers, fathers, brothers, sisters, friends and their own attempts and thoughts of suicide have been addressed. Two of these people have credited the screenplay with adjusting their thoughts about suicide. So without being made into a film the script is helping people. What more could I ask for! Well I would like to see it made; everyone has a bit of an ego.
Now to the Poland Syndrome Documentary, when I was born Poland Syndrome it would not be named for another eight years and throughout my life I never heard of it until I was fifty-one years of age. I thought that I was alone, just a birth defect, my birth defect. One day I was walking through an airport, a gentleman as me what happened to my hand and I said that it was a birth defect. He got almost excited when I told him and he said I knew that it was. Next he asked me are you missing a pectoral muscle and I just about fell to the floor. He then lifted his hand and said that you most likely have Poland Syndrome. Immediately I was elated to know that I wasn't alone but then went into deep thought and shut the world out, including Bo the gentleman that told me. Finally knowing after fifty-one years was just too much on the senses. Bo handed me his card and left me to my trials and tribulations. Later that night I looked at the card and read that Bo, the first person that I knew who had Poland Syndrome was the chief engineer and manager of the Space Shuttle.
And that's a whole other story, I'm finding out in my research for the documentary that people with Poland Syndrome are brilliant and extremely talented. This indeed sparked my idea for the documentary to have these wonderful people with Poland Syndrome on both sides of the camera. For example one of the films producers Doctor Crystal Baker has PS, Mario Padovani who is composing the music score had PS and born with PS, author Cynthia Sharp is sharing her vast knowledge as a producer as well. Just amazing people!
After much research I'm finding that many learn as I did later in life that they have PS, that fewer than twenty percent of the medical community have even heard of PS and the parents of the nearly two children born every one to two weeks with Poland Syndrome have nowhere to go.
For the Poland Syndrome documentary we are traveling the globe to meet with and interview Doctors, Scientists and people of all ages with PS, to connect the dots if you will to finally bring together a cohesive understanding for the medical community and people with Poland Syndrome alike.
Not an easy task, but I can do it because I'm special.
Please look at our web site www.polandsyndromedocumentary.com , view our business plan and see all of our accomplishments to date. We are now connected with the Italian Poland Syndrome Association, Paralympian Kim Daybell, many doctors and families around the globe. We have just gained non-profit status through, From The Heart Productions and we are now working on our funding for this immense project.
Thank you for reading and don't forget you are special too.
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