Matt Connarton Unleashed: Charles Mattocks

0:00 Speaker 1: And we have with us now via phone. I believe our friend Charles Maddox is there. Charles, is that you.

0:07 Speaker 2: Hey, how's everybody doing this morning?

0:10 Speaker 3: Good?

0:10 Speaker 1: Good, welcome, or I should say welcome back. You've been on with us a couple of times.

0:14 Speaker 3: Before over the years.

0:16 Speaker 1: I think the first time. The first time was jeez, it had to be at least five years ago. The first time you were on, I think you had had you put out the documentary about diabetes.

0:27 Speaker 4: Was that okay, yeah, yeah, yeah, that's been out.

0:30 Speaker 3: It's coming back to me now, yeah. Yeah.

0:32 Speaker 1: Well you're a busy guy. You do a lot of stuff. So so welcome to the show on this Saturday morning. Jenny is here of course as well. And the subject of your newest documentary, Trial by Fire, is something that obviously Jenny is she can relate to, unfortunately, because it is about a very serious subject CRPS, complex regional pain syndrome.

0:55 Speaker 3: And let me ask you right.

0:58 Speaker 1: Off the top, Charles, what what was it that compelled you to make this particular documentary Trial by Fire?

1:07 Speaker 2: Yeah, you know it.

1:09 Speaker 4: My mother suffers from from CRPS, and I remember she had it probably about maybe about three two three years maybe even longer and I would go see her, and I really didn't have any understanding of what she was going through. And she was was at a place where you know, she would complain about the pain. Not once again, I was ignorant to what CRPS was. I would just say, well, Mom, maybe you should go to the gym, maybe you should try to stretch it out. You know, you got to walk it out. You know, things like that that you know, really weren't going to help.

1:51 Speaker 2: And then one day I went over there.

1:52 Speaker 4: Now you know, she's a very proud Jamaican woman, and I was there one day and this was you know, like I said, she was doing with a lot of pain, but you know, she was still mobile and so on and so forth. And I remember her saying something about, you know, wanting to maybe not be on earth anymore. And I said, whoa hold on a second. That that you know, my mother talked like this, you know. So at that moment, I literally went online and went to YouTube and just started you know, looking up stuff and online looking up stuff.

2:29 Speaker 4: And I just bumped into someone who I think had CRPS, and it was real bad and they were talking about how bad it was and about suicide and things like that, and that's when I said, wow, you know what, I don't know what this is or what this is doing to her. I get it now because I saw someone else who was explaining it, and I said, you know what, I've got to do something about this. And it was kind of like I wanted to kind of chronicle what she was going through, but through chronicling or trying to chronicle what she was going to go through or going through, you know, I had to kind of reach out into the community to say, you know, let me reach out, try to find other people who were dealing with this, because I want to tell this story, not just her story, but just overall and see what was going on with this condition called CRPS.

3:25 Speaker 4: And that kind of opened up the door and I met some people in Tampa Saint you know, I was living in Orlando at the time, so I met some people who were.

3:35 Speaker 2: In Orlando area.

3:39 Speaker 4: Who were I have the kids of it, and you know, they they said, hey, Charles, you know what would love to, you know, help you tell this story. And that's that's pretty much how it got started. I was really just wanting to see what she was living through, but then also met other people who were dealing.

3:56 Speaker 1: With it as well in terms of reaching out to other people who are dealing with it. Was that, I mean, how challenging was it to find those people? Because CRPS? I mean the average person probably has no idea what it is, and and it's not always uh, you know, as as you mentioned, easy to diagnose. And I mean, Jenny, how long is.

4:15 Speaker 3: The years before the diagnose yours?

4:17 Speaker 1: Yeah, you know, obviously, And and the thing is too, it's it's such a conundrum. It's like when you have an illness that is rare. Of course, it's it's harder to diagnose because fewer medical professionals have seen that particular illness, and there's a lack of research and whatnot because it's you know, it's not again, it's not something most people have heard of. You know, everybody knows what diabetes is, but the average person has no idea what CRPS is. So was it was that challenging finding these people?

4:47 Speaker 2: No, it actually wasn't.

4:48 Speaker 4: The thing is is, you know, there are some some some great groups on social media, whether it's Facebook or whatever it may be. In a particular person that I ran into that was close to me, they had a great support group and also they knew a lot of other people, so they had resources from doctors to experts to uh, you know, hundreds of people that were following them, and that that kind of opened up the door that I found other advocates like at that that time, it was like Barbie Ingele, who was very vocal a few years ago, you know, she still lives about CRPS and pain,

5:31 Speaker 4: and it just started connecting. And because there wasn't much advocacy on it, the fact that this film was being put together was really you know, raising a lot of awareness. Now, they don't get it wrong. It wasn't it wasn't easy. There were there were a lot of nights where you know, at times, because of the pain, it's easy at times to to to.

5:56 Speaker 2: Shoot the messenger.

5:58 Speaker 4: So I had a lot of sleep with sleepless nights at times trying to pull all this together and and attacked at times. Uh you know, but but it was it was it was all worth it. And there's some amazing people out in who are dealing with c RPS, and and you know, I still see, you know, what my mother is going through daily and it's really had taken her her whole, her whole life to be honest with you now you know she's now bedridden and sad to say, and uh so, it's it's it still inspires me to want to get out there and change and because also there aren't many other advocates that are known or can do what what what I can do with this, you know, these films, I kind of feel like it's my it's my, you know, god given destiny to try to continue to fight for people.

6:58 Speaker 2: With see RPS.

6:59 Speaker 4: And I've come to know so many and have so much respect and love for them too as well.

7:05 Speaker 3: That's how we met.

7:06 Speaker 5: How you and I actually met is because of CRPS and what you're doing with Trial by Fire is so vital to get information out there, and unfortunately in America we don't have as much information out there as they do in other countries. When I was in the Netherlands, my girlfriend had gotten into a bad accident and I got to see an entire protocol that they have to watch out for CRPS and people who get injured like that. But we have nothing like that, especially here. But I know that you're not just showing this here in the United States.

7:39 Speaker 5: I know it's been seen in well over what twenty countries. You've won numerous awards with this documentary, and now what's exciting to me is that now it's going to be carried on Netflix soon, isn't it. No, No, Amazon Prime, Amazon.

7:56 Speaker 4: Prim hopefully the next few weeks, which is really exciting. And No, you're right, it's probably been seen in over twenty five countries and and I assume by by uh who knows, I mean at this point maybe millions of people, because it's still getting seen and because it's it's been on PBS, it's been on you know, some great platforms already. So it's it's very exciting. And we plan on even with this new documentary that we're doing Drop by Fire, to go into other countries to kind of examine what's going on right now as.

8:37 Speaker 2: Far as that.

8:38 Speaker 4: But it you know, it's it's it's and I'll say this, it's I wish I wish it was it was easy to to to to get this done. I mean, you think with all the people who are dealing with pain, I mean, hundreds of millions of people are dealing with pain. It's one of the biggest biggest businesses is the pain. Unfortunately, and I don't know how many fad again.

9:05 Speaker 5: Chronic pain patients have been hurt so badly.

9:08 Speaker 4: Of course, of course, and what you're doing you don't know.

9:14 Speaker 2: Oh, I'm sorry, go.

9:15 Speaker 5: Ahead, I'm sorry, I'm sorry, go ahead.

9:16 Speaker 3: No, I was saying, she was just saying, what you're doing is so vital.

9:22 Speaker 4: Yeah, yeah, no, And I was saying that you don't know how many doors I'm knocked. Gone to try to get some small funding just to get this done. And you know, the sad thing, especially with CRPS is there's there's no cure, so there's you know, there's no money in that. So it's hard to find people who who say, you know, yeah, well we'll get involved. I mean, I even reached out to a lawyer. That's that's pushing trying to fight for people with with c RPS. And and you know, you got to figure that a lawyer who might take one case and who could make you know, hundreds of thousands, just not more than that, you know, is is more concerned with you know, how much it's gonna cost, you know what I mean, even even if it was twenty five thousand dollars.

10:14 Speaker 2: But I mean even twenty.

10:15 Speaker 4: Five thousand dollars could do a lot for us, but to get you know, some scene shot. But you know, they can make a million dollars or if not more, on one case, and if they bring in ten cases, they could make, you know, a whole lot of money. But so it's it's everyone is really in it for for for the money, and unfortunately.

10:37 Speaker 3: That's healthcare one hundred percent.

10:39 Speaker 5: That's true. And one of the one of the key treatments what's the RPS is kindamine infusions and for the vast majority of patients are having to pay cash out of pocket because they're you know, or fight. I've been fighting insurance and I've got a provider that's allowing me to use it, but I'm having to fight. And the thing about this is too is yes, CRPS is rare, but people with rare diseases are not. One out of every ten people has a rare disease. And the light that you're shining on this is extremely important in the sense that a CRPS complex regional pain syndrome is the most painful disease known to modern medicine, and as you said, it has no cure.

11:17 Speaker 5: However, seventy percent of people with it, including children, will consider suicide as the option because it is that bad. It's called the suicide disease by the medical community and has been called that for over two hundred years, so it's been a disease that's known but not known enough. And the light that you're shining on this is vital to save lives.

11:39 Speaker 4: Yeah, yeah, yeah. And I've had a few people that I've had to that just reach out to me, and I've kind of had to say, listen, just don't do that and if you have to call me personally and let's talk. Over the years where I've literally had to try to, you know, just talk people out of things. And I remember of late and I like to be real because you know, when when doing an interview, you could always gloss over things and and make everything out to be peachy and keen, but it's really not. And I think that, you know, the people who are dealing with this and the people who need to know about it need to hear the reality that that's out there at times of you know, what they're dealing with, because I hear reality from them all.

12:32 Speaker 2: The time, and it's like, wow, I wish I could do more.

12:34 Speaker 4: But I had to release a lady recently who this was a couple of months ago, and she would always say just the nicest things to me. She would just I didn't know her, but she just reached out and you know, she was dealing with CRPS and and I remember before the last time where I spoke, so I saying, listen, just you need anything, just let me know, and so on and so forth, and no idea, you know how bad things were. And then probably a couple of weeks later, someone reached out and said, Charls, I know you and so and so we're good friends and she had a lot of respect for you, but you know she's.

13:10 Speaker 2: No longer here. And I was literally.

13:13 Speaker 4: Just just shook it because, like I said, she would always encourage me. She would always say nice things and reach out and send me a nice message. And you know, to hear that was.

13:27 Speaker 5: Like, especially when we know that there are options and things that can be done out there, but it's it's money that gets in the way. It's it's lack of access, denialed access the care or if you don't have enough cash to put up front, you don't get it. So you know, yeah, this isn't a serious thing to talk about. And I'm glad that you're doing a second version and you're talking about other areas of the world, because some areas of the world are dealing with this better than we are, and we could we could take a turn out of their page, you know, take page out of their book, I should say, of what they're doing to help not only protect and preserve lives and save lives, but preventative medicines that we in America really kind of stink about.

14:11 Speaker 5: When it comes to preventative medicine, we stink.

14:15 Speaker 1: Well in a in a broader in a broader sense too. In America, we just don't. Yeah, there's not enough focus on preventative anything. When it comes to health. It's it's all about, you know, waiting until you get sick and then.

14:29 Speaker 5: We have good sick care sort of, but not great preventative.

14:33 Speaker 1: Exactly, yeah, exactly, Yeah, that's and unfortunately some of that I think it's just American culture. But but yeah, but this is something in terms of CRPS. I mean, this isn't like it's not like you can just you know, as we were talking about, you know, there are treatments, but it's not like you can just go to the gym or take some vitamins. I mean, you have to be able to you have to be able to have access to to what you need, not to cure it, because there is no cure, but but to try to manage it as best you can.

15:02 Speaker 2: And yeah, and there are people who literally, I mean.

15:08 Speaker 4: Who are traveling from different parts of the world just to you know, there's some treatment out here and for the kiddymene in Florida, and literally you hear the stories it traveling from, you know, whether it's Los Angeles, New York, Canada, Europe, and some have to do this every few months just to get a little bit of relief. And it's costly. This is not this is not you know, a couple of hundred dollars. This is uh, you know, some some serious money to get on a plane, you know, and and and pay for treatment, have to stay in hotels, you know, have to rent cars on and so forth, just to get a little bit of relief for you know, three months.

15:53 Speaker 2: This is not easy.

15:54 Speaker 5: No, no, it's not.

15:56 Speaker 1: What was kind of the criteria Charles for in terms of people who you put into the film, uh to talk about this and were there some people who you spoke with who you wanted to put in it. Who maybe was there anyone who declined to be in it, because some people are, you know, as much as they might like to help and spread awareness, some people are obviously just very private about their health. So I'm curious what the criteria was and did you encounter anybody who just said, no, I'd like to help, but I don't want to be in the in the documentary.

16:28 Speaker 4: You know, I'll say this, almost everyone wants to be and wants to share their story. Yeah, because and this crosses color lines, is called crosses gender lines, as crosses everything. I mean when when you know, when dealing with this, you know, this type of pain, people just want to tell their story. I mean, we get now hundreds of messages where people are like, Charles, I just want to tell my story, please, I have a story to tell. And it's it's to the point now where it's like I'm so you know, focused on trying to raise some money to get this done that it's like listen, I've got to reply and listen I will get back to you, because you know, we have so many messages that it's and some of these messages are like very long, where you know it's going to take me a few minutes to just read through the one message.

17:28 Speaker 4: But I understand, you know, what they're dealing with. So we're going to have to get back, take a day and get back to everybody. But no, everyone wants to share. Even back then when we were shooting the film, everyone wanted to and wanted to share. And I think in many ways, because you know, like we just talked about this being called the suicide disease, that that a lot of people are. I mean, you know, you can't even me and you we don't deal with what they're dealing with. And we can't understand being in pain day and night.

18:08 Speaker 4: I mean, can you imagine stubboring your toe and and the pain of that and having that day and night, and now you take that and amplify that a hundred times where this is running through someone's body. We can't understand what that is. So I mean, when you think about that and and people are thinking about, you know, maybe taking their own life, they want to share. There's a lot of people. I just I just had a young lady a few days ago send me a message and she contacted me through WhatsApp. She said, Charles, I don't think I could do this anymore.

18:50 Speaker 4: And she's got I think two kids, and and I'm like, listen, just hang in there. And you know she's got a fiance or husband, and

18:59 Speaker 4: you know, this is wow. I you know, words can't even express what what what they're dealing with and how we need to fight for this. And then this is why I fight for it, because once you know, once again, if if if I don't, I don't know who will. Right Oh, thank god I'm able to have the resources as far as getting the message out there and putting a good story together and so on and so forth. You know, I wish it was easier, you know sometimes I you know, like I said, I'm banging my head trying to understand, you know, why it's so hard to be able to get a project like this together.

19:41 Speaker 4: But you know, I understand that this is the world we live in, and but we keep fighting and and you know, hopefully we're working on going to Italy to highlight some of the treatment that they have over there. So we've been talking to that clinic over.

19:57 Speaker 5: There, and that if administered early enough, it can halter or reverse or put into remission torps. I used to know a woman who had a fourteen year old daughter that took her to Italy for the treatment. It did work for a number of years, and then I guess it came back went back to Italy for an additional treatment. But it has to be done early, early, early, Like by the time we knew that I had CRPS, it was too late for that to work for me, and to access it here in the United States. I don't think you can.

20:35 Speaker 5: I think it's impossible. It's not even like an option for us.

20:40 Speaker 2: Yeah, I think it's only in Italy. Oh.

20:43 Speaker 5: People have mortgage with their houses to get, you know, done, anything to get their loved ones over there to try it, ye, you know, just just to have something to try. And I do want to say, I mean, this is a serious topic. It is difficult to talk about at times, but this is why you're done this documentary and why it's so important to talk about these documentaries and get that information out there. But if you are having any concerns, or you're not feeling too hot today, or you need some help, please remember you can dial nine eighty eight.

21:10 Speaker 5: Nine eight eight is the suicide and crisis Lifeline, and there are people there that can help you. So there's always a voice out there, don't forget nine eighty eight.

21:19 Speaker 3: Yeah, yeah, yeah, absolutely, And.

21:23 Speaker 4: I think too as well. Part of me, you know why I fight too as well, because you never.

21:27 Speaker 2: Know what might be around the corner, and.

21:30 Speaker 4: You want, you want folks to hang in there and hold out hope that maybe there is some treatment out there that that you know, I won't have to mortgage a house or fly across the world to get done. You know, hopefully there is something that that.

21:47 Speaker 5: Part of my hope too is with you doing this, I have hope that maybe that gets some of the people up on Capitol Hill to pay attention and approve treatments that are working for people with the RPS. But I do you want to also bring up because Charles, you've done a lot of really great advocacy work, especially in the realm of the Forever Sick, and you've also done work in highlighting diabetes and type one diabetes and type two diabetes. I know you did a documentary series on that as well, and I wanted to make sure that our listeners heard about that.

22:21 Speaker 2: Yeah.

22:22 Speaker 4: Yeah, yeah, We've done some great shows, and you know we have the first docuseries we did doctor reality series.

22:30 Speaker 2: Was called a Verse who shut in Jamaica.

22:32 Speaker 4: And featured you know, people living with diabetes. And I've done a documentary called The Diabetic You and a couple other projects on diabetes, and so it's it's been very powerful and and you know, now that I'm even talking to you, I'd love to follow up once we get off to as well, because there probably is some other things that we could be doing, whether it's starting some sort of you know, online petition where we have you know, a few thousand people signs to things that could be brought in front of some legislation or or some more awareness that maybe you could help me with and help the community get out there, so we can kind of make this more movement because we have to force the hands of these companies.

23:22 Speaker 4: We do, these pharmaceutical companies, they've got to open up their eyes and take account and at least, if nothing else, help support the people, whether it's even with treatment options.

23:38 Speaker 5: Oh exactly, look at what's happening now in our community. Lotos snow truck Zone is a medication that's working for a lot of people, what's the RPS and small fiber neuropathy, including myself. However, the pharmaceutical company that makes Nell truck Zone won't make it in the low doses that people like us need it because it's not profitable for them. They only make it in the family high dose. So all of us have to go to compounding pharmacies to get the medication, which means we're paying one hundred percent out of pocket and it's not cheap, you know, and have it made that way because insurance gets to take a walk because it's compounded.

24:13 Speaker 5: Pharmaceutical company goes not enough money in that for us, So we're not going to make it, you know, and you're you know, you're left with either you know, no money, no med or whatever you're going to do to get the med yep nop exactly.

24:27 Speaker 4: Maybe maybe we need to get a petition against or for that company, right so maybe they can open up their eyes and say what is this? Who are these people and maybe take a different look at it. I think, you know, collectively is a community while it's a rare disease. I'm sure they're I don't know how what the number is but of CRPS people. But any petition with you know, fifty sixty to seventy thousand signatures might make that company say, you know, what.

25:02 Speaker 2: We may need to.

25:03 Speaker 4: Take a look at this or at least address this in some form of fashion.

25:07 Speaker 1: Right right, exactly exactly, Charles. It is already approaching the top of the hour. We need to begin to wrap up, but before we run out of time, I want to make sure the people know where to find the documentary Trial by Fire, and also too where they should go to find your other work, your other documentaries, and anything else that you want our listeners to know about. How to keep up with everything that you're doing.

25:32 Speaker 4: Definitely, and I really appreciate this. My website is probably the best place. It's BELLA and l eMedia dot com. B L L A A and D L E E L l eMedia dot com and you can always just google my name Charles Maddox. I'm not hard to find Trial by Fire, like I said, is on YouTube right now, on my on my UH on one of my pages, the Future of Health Network. But probably will more directed toward the Amazon Prime so that we can really get people focused there. And who knows, maybe you know, with some great views on Amazon Prime, they may be interested in doing something bigger with us regarding CRPS, and so we really want to push that initiative, and and and for those who are listening, do remember that collectively, you know, as an army of people, we work better because we have to share.

26:34 Speaker 4: There there are people who are literally just now seeing try by fire after so many years. And we have to make sure that when we get this opportunity that we share, we share, we share, We ask our friends to share, We ask the friends of our friends to share. And even though at times a lot of us don't get the support that we would like, just keep pushing, just keep share and get the message out there. And I think if we work together at least we can cause some some some attention and some eyes to be put on on some things so that we can try to get some some more help and resources out there.

27:15 Speaker 1: Yeah, absolutely absolutely all right. Well, Charles Maddox, thank you so much, my friend. It's wonderful to have you back on the show. Always great to speak with you, and and we we really love and appreciate what you're doing.

27:26 Speaker 3: And uh, keep it up, man, keep it.

27:29 Speaker 2: Up, thanks so much, and have a good one.

27:32 Speaker 1: Absolutely, Charles, thank you, Take care about it all right. That was Charles Maddox, filmmaker and also a celebrity chef and actor, and he does a lot of stuff by the way he did yeah, not just you know, obviously we're focused on the documentary with with that conversation, but he's a busy guy. He's got a lot going on, so you should definitely check out everything that he's doing.

27:55 Speaker 5: Absolutely, and he and see I follow him all the time because he does home mutch in the chronic illness area and shine such a great light on it, especially with that series he did that serious he was talking about on diabetes is excellent and they talk about things that they do to you know, help stay healthier, diet and so forth. So it's it's good to have those conversations. Frankly, and Trial by Fire one hundred percent excellent movie to watch. If you haven't seen it, please see it, share it, help spread awareness.

28:25 Speaker 5: The more people that are aware and know, the more we can do to try and help them prevent people from losing their lives.

28:32 Speaker 3: Yep. Absolutely, And again.

28:33 Speaker 5: I want to just remind people if you're having a hard day or you're needing someone to talk to, please remember nine eight eight is a great number you can call. You can find help and support there and no shame.

28:45 Speaker 3: Nine eight eight yep absolutely