Nancy Renée Cotterman, of CRPS Partners In Pain, Inc., recently spoke with Charles Mattocks, director of Trial By Fire, a film based on complex regional pain syndrome (CRPS). Charles is known as a celebrity chef, an Emmy-award nominated actor and film and television producer about what inspired him, his history with the disease and what people can do to help patients and advocates of CRPS. Nancy and CRPS Partners In Pain, Inc. were instrumental in making introductions that got this project started. We at CRPS Partners In Pain, Inc. are so proud to have played a part in this ground breaking film about CRPS (Complex Regional Pain Syndrome)
Nancy to Charles:
Charles, it was a year ago that you first contacted me and started the journey that is now Trial By Fire. What is the most important thing that you have learned in making this film?
Charles:
I've learned that I'm thankful each day that I don't have to experience the type of pain I have seen, to be honest, I'm not sure I could handle it. While I think that I am strong, this takes the strength that at times is super human. I give a lot of credit to the people of CRPS, many deal with pain, some work jobs and take care of their families. I've also learned how amazingly talented in wanting to give, that many are in the community. There are people that help each day that I am thankful to have in my life. They do the work of a thousand, for people who never know that they are fighting for them.
Nancy to Charles:
What surprised you the most while creating this film?
Charles:
The fact that we couldn't and didn't get support from the medical and pharmaceutical companies. There's a division in the community that seems to hold back organizations from working together, and some of the people putting negative energies toward one another. I've heard too many stories of people leaving groups, being hurt, and depressed by negative comments or slander. I understand people have different views, but maybe I thought, those could be put aside for the bigger picture. I feel that the world is looking at CRPS and I'm praying that those with issues can focus on the bigger picture, because there are too many hurting that need help desperately. That is what is really key, not who doesn't like me or some other people, but the people.
Nancy: We should all work together. We fight this monster day in and day out. We shouldn't be fighting each other as well. It is what distresses me the most as a member of the CRPS community trying to make a difference
Nancy to Charles:
What do you hope will be accomplished by Trial By Fire?
Charles:
When I first started talking talking to people in CRPS, I heard they needed a voice, I heard they needed a face. I don't claim to be that, but I hope what I brought helps spark a fire, helps create conversation, helps bring awareness. Some who have seen the film, tell me Charles, "my husband, my wife, my mother didn't understand how serious this was and after seeing the film they did." As much as this is for the people of CRPS, it's even more so for the doctors, the friends, the family members, the undiagnosed, who need to know about this disease.
Nancy to Charles:
How has this journey impacted you? Your mom?
Charles:
Mom is on a journey that she sees little hope ,right now it is just about quality of life. It's about living the best she can with the least amount of pain. I think she has given upon a cure and even treatment, but is trying to do the best she can each day. For me, I have met friends and what I call family members, for what I hope will remain with me forever. I have seen the best and the strongest through pain.
Nancy to Charles:
5. Since creating this film what do you think needs to be done to help those with CRPS? Especially regarding medical treatments?
Charles:
I am a man at times, of many words, but this is one that leaves me clueless. Many companies are motivated by money. If there is no money in a treatment or cure they won't pour hundreds of millions into it, because that is what it takes for a cure. I hope that there is something that is already out there to help on the market. I hope that a miracle happens, but I think this film might help at least open a door to a conversation getting started. At times, we force them to care.
Nancy to Charles:
6 .What moment during filming stands out the most?
Charles:
Losing Hannah at 19, two days after wrapping the film. I remember walking the street in shock as I had just seen her two weeks before. I think that is what stands out the most. There were amazing memories, but that one is what stays in my mind.
Nancy: It is horrible when we loose someone as young and sweet as Hannah. It never gets any easier. She was a ray of sunshine even though she lived in horrific pain trapped in a body that did not allow her to do the things someone her age should be able to experience.
