Marie McGowin 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.
What inspired you to make Trial by Fire?
What inspired me was the fact that my mother was diagnosed 8 years ago with CRPS and my father had just died a couple months earlier from cancer literally out of nowhere. So I remember going to her house and she was having a very bad day and talking about wishing she wasn’t here type thing. That really moved me because it was like, I just lost my father and didn’t want to lose a mother less than a year later.
So I realized because I had done so much work in diabetes as far as being an advocate for that and I had a background in that, so I figured, you know what, I was also directing a film on diabetes that I’ve been directing around the world. So I figured I would kind of step up for the people of CRPS because from what I saw didn’t really have a face or a voice and I figured I could combine the 2 of being not only an advocate for CRPS but also doing something to kind of tell my mother’s story while I try to figure out how I can help her.
In your own words, what is CRPS?
It’s Complex Regional Pain Syndrome and obviously it’s a rare disease that comes from some form of contusion or some trip or fall or people get it from even blood draws. It’s a painful disease that’s rated higher up on the pain scale, higher than amputation and childbirth. So the people living with this are living with a severe pain that’s daily is just intolerable at times.
Can you talk a little about the patients and families you spoke with for the film?
I spoke to one young girl, her name was Hannah. She was at the time 19 years-old. She was suffering very badly from CRPS. She had a great support system. Her mother named Janet was there to work with her. CRPS had clearly run rampant on her and she was pretty much paralyzed. Her eyesight was affected. Her internal was affected, so she was also. She had to eat through a feeding tube. She actually passed away 2 days after completing the film from complications of CRPS.
I had a young girl who’s 15 years-old now, a beautiful young girl with a great support system. But once again, the CRPS has run rampant on her too where once again it’s affecting her internal and she also has to eat through a feeding tube. But she is trying to live the best life she can. She’s going to school now and even though she can’t really get around the way she should. She’s in a wheelchair at times.
I spoke to another young gentleman named Clark who was once a tennis pro who is now just trying to live the best life he can, getting ketamine treatments and just trying to keep the pain down.
I spoke with another lady named who is being taken care of by her 80 year-old parents who was living a productive life and just through the smallest of episodes, her life is now turned upside down. She recently had to move from south Florida to central Florida just to be close to treatment, so they had to sell their house and relocate. It’s very sad stories but people are dynamic and still fighting. At times, they give me hope because I wonder how someone going through so much can still be so positive and still keep smiling.
What has been the feedback of Trial By Fire?
Unbelievable. It’s been unbelievable. I think for people who have CRPS, for them this is real life. The film is very real. There are light moments but we tell a story that these people deal with every day. So, even if people have some hope and get some treatment and the treatment puts them in remission for a short period of time, it’s actually only a short period of time. And they also have their lives that are upside down now. Many have lost work, don’t work, have hard times with loved ones and have hard times finding support.
I think people are literally blown away and, from what I understand, many in tears and blown away from the truth and the reality of the film. It’s a very gripping film. For 54 minutes, it keeps you glued, wanting to know more, wanting to understand more or understand that this is your story. I had one girl say, “Thank you, Charles,” because her husband or fiancé maybe didn’t get it but I think he gets it now after the film. There was also another young girl who was there who I think her father didn’t get it or didn’t understand the severity of it. And now because of this, he was able to understand really what his daughter was going through because it’s hard to understand pain, especially when it’s someone else.
Is there something that people can do to help advocates and patients with CRPS?
I think the best thing they should do is learn about what CRPS is and learn about some of the symptoms. And if you are a caregiver, support is so key because you have to learn how to be a good support system and understand they are going through tremendous pain, mentally, physically and emotionally.
There’s a young girl, about 26 years-old and she was working in Manhattan, got injured on the job, now had to move back home to Florida to live with her parents where she’s not getting any income. She can’t work. She can’t drive. She’s in tremendous pain. You could imagine how heartbreaking that could be for someone. And, if you don’t have support or the correct support, you don’t want to be mentally abused or told something that could put you in a worse situation because you’re already requiring someone’s assistance for life. Being a real positive support role model for whoever you’re dealing with is very key because they’re in a vulnerable situation. So learning about the disease, being able to do the research, talk to the doctors, get information, work hand-in-hand, find a good doctor. That’s also key. I’ve seen several stories where even with Hannah, it took her 10 years to find one good doctor and a lot of people thought they were crazy and it was all in their head. A lot of these doctors actually did more harm than good mentally to some of these people. So making sure that you become active in their lives and in their medical life.
Where can people see Trial by Fire?
Right now we’re in film festivals. Then after that, we are in talks with many major distribution companies. So once we finish the film festival run and win some awards and we are doing some select screenings across the country. We just had one in Florida. We have another one coming up in Texas and then another one possibly in New York. But then we will be seen around the world very shortly in the next few months.
Is there anything else I should know about CRPS or Trial by Fire?
Trial by Fire is not just a movie. It’s a movement and that’s really what I wanted to do here. I didn’t just want to create a film. We have engaged thousands of people with CRPS and allowed them to be active in the promotion of the film. So we encourage them to tweet. We encourage them to Facebook. We encourage them to comment on stories. We encourage them to share. We encourage them to tell their friends.
I look at the ALS movement, I look at other movements and that’s what we want to create. I think what CRPS needed was a shot in the arm and it needed a voice, and Trial by Fire is more of a voice and a shot in the arm and also a sounding board for positivity and change because this film needs to be out so doctors can know more about what CRPS is. Because most doctors don’t know what CRPS is. You can imagine if you’re in, let’s say, Jamaica, how many cases of CRPS in Jamaica that will never be diagnosed because if doctors in America don’t know about it, you can imagine what’s in Africa, or in India, or in the Islands. So this needs to be seen so that we can educate doctors themselves so that they can diagnose these patients correctly and get them the treatment that they need, so that it may not get to a point where it’s something that could take their life. This is called the ‘suicide disease.’ It won’t kill you but it will make you wish you were dead.
Marie McGowin
Patient Advocate
CRPS Partners In Pain, Inc.
