What You’ll Learn
- Chronic diseases, like Lyme disease, have been increasingly impacting a younger and seemingly healthy population.
- Much of conventional medicine is not equipped for the complexity of these chronic conditions.
- You’ll hear how the guest refused to be a victim of Lyme disease and went on to start some incredible ventures.
- This is the story of Artists Bite Back with Valerie Rose Yawien.
People normally associate chronic disease with the aging population, but that couldn’t be further from the truth. Today’s guest showcases how chronic disease does not discriminate. An Award-winning actor and singer for stage and screen, she’s performed in a range of productions from classical musical theatre to modern operettas to memorable film roles. But beyond her accolades in acting, she is the creative mind behind ‘I Have Lyme: The Movie’, an original feature film about battling and overcoming Lyme Disease inspired by her own journey to recovery.
This is the story of Valerie Rose Yawien and Artists Bite Back.
Enjoy the show!
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Connect with Valerie & Artists Bite Back
Personal Site: www.ValerieRoseYawien.com
Personal Facebook: @valerieroseyawienofficial
Personal Instagram: @valerieroseyawienofficial
Personal Twitter: @ValerieRYawien
‘I Have Lyme: The Movie’ Website: www.ihavelymethemovie.com
‘I Have Lyme: The Movie’ Facebook: @ihavelymethemovie
‘I Have Lyme: The Movie’ Instagram: @ihavelymethemovie
‘I Have Lyme: The Movie’ Twitter: @IHaveLymeMovie
Artists Bite Back Community Facebook: @artistsbiteback
Artists Bite Back Community Instagram: @artistsbiteback
Disclaimer: Transcripts are prepared by a transcription service. Refer to full video above for exact wording.
Caspar Szulc: 00:19
People normally associate chronic disease with the aging population, but that couldn’t be further from the truth. The reality is that chronic disease impacts more than 50% of Americans, so if you’re in a crowded room and look around, most likely half of the room is impacted by some form of illness that has been with them for years, and many may seem to be young, healthy and vibrant people. Today’s guest showcases how chronic disease does not discriminate. An Award-winning Actor and Singer for Stage and Screen, she’s performed classical musical theatre, modern operettas, dramatic new plays, solo vocal concerts, and memorable Film roles in comedies, indie and experimental short films, commercials, and feature films. In fact, she’ll be making her South By Southwest on-screen acting debut in just a few weeks as a featured performer alongside Benjamin Bratt, Maggie Gyllenhaal, and Peter Sarsgaard in the Film ‘Best Summer Ever’. But beyond these amazing accolades in acting, she is the creative mind behind ‘I Have Lyme: The Movie’, an original Feature Film about battling and overcoming Lyme Disease inspired by her own journey to recovery, and presented by the organization she founded as an Arts Advocacy Organization and Production Company, focused on elevating the voices of those impacted by Lyme. This is the story of Valerie Rose Yawien and Artists Bite Back.
Tell me your story and you could start wherever you’d like and go back as far, be as descriptive. I’m going to let you do your thing. So what is Valerie’s story?
Valerie Yawien: 02:01
So thanks so much for having me. It’s great to be on this with you, my story and like so many chronic Lyme patients’ story is very complex. It’s a long and winding road. There are many chapters and sub-chapters and experiences that I have dealt with both on my own as well as with the people around me. When I think about the Lyme patients, do you see that there are aspects that differ from the point of view of how you are approaching the story so I think that’s also something that’s really important to acknowledge. I grew up in Brooklyn, New York. I started dancing when I was three or four years old. I was just immediately drawn to the stage and forms of physical expression and I was a competitive dancer, kept going and going in that field. And then when I was about seven or eight years old, I realized, hey, I also really liked to sing and hey, I really liked to act and so naturally being in New York City and I eventually joined an off-Broadway theater troop when I was eight or nine. They’re based in Chelsea, New York and they’re still around today – shout out, they do great work.
And so then I began my really aggressive, I segwayed from strictly dance to voice training and voice training and I began performing off-broadway in multiple original music theatre production three to four times a year. So at that point, my life became about splitting my time between Brooklyn and Manhattan, that was a really important moment in my life. I was independent. When I reached a certain age I was taking the train and took the subway by myself and I was just always really sure and where my heart was and what I love to be around and what I wanted to do. So concurrent with that and that drive and, my parents never pushing me of course, they were appreciative of the arts but not artists themselves.
So at that time when I was performing and going to school nonstop and basically just doing everything in my life, times ten, which is a big part of my personality and being, I was tired a lot and I have these memories of taking the train back and forth and getting on the subway stop outside of my junior high school in Brooklyn and making that walk over the overpass. And I just had these very distinct memories, my spine really heavy, and being really so deeply tired to my bones and falling asleep on the train and waking up and nodding off. And on the weekends when I was performing, we had our matinee performance and our evening performance and on that lunch break in between everybody just had all this energy and I just needed to just eat my lunch and chill. But I wasn’t conscious that this wasn’t normal and I wasn’t conscious that something was going on that needed to be addressed.
So to the outside perspective, and I think this is where people who deal with Lyme long term and are diagnosed right away, things can fall through the cracks because not only because the testing and the tracking of this disease is inaccurate and antiquated in terms of conventional models which we’ll get into later. But if you don’t know to look for something and you don’t have the tools from your pediatrician or average medical doctor to see what’s actually going on, you find reasons to justify. So when I’ve spoken to Lyme patients through my platform, Artists Bite Back, like what I always hear as well, my parents didn’t realize something’s wrong because at the time of school was really hard and I was doing a lot of afterschool activities. I was still seeing all of my friends but I was still really active. But I was actually really hurting. And when you think about pediatric Lyme, children don’t necessarily have the means to communicate what’s wrong because they don’t have the scope of experience to have comparables.
So for me, it’s like my neck hurts. I started going to chiropractor at age 13, 14 but I’m dancing and performing eight shows a week and I’m doing like a 40 hour work week and rehearsal schedule and again working really, really hard in school and everything else. So that is something that really bothers about this particular issue, that there are so many children. Luckily I didn’t fall into the category of behavioral issues. What we’re seeing more and more in terms of our food sources being really toxic, all of these other factors that are causing people’s predispositions and that genetic makeups to be expressed to a more extensive degree in terms of detoxification. So kids, they need the help. And they’re not able to get it and so when I reflect back on my journey, and look at my younger self, what would it have been like if I got the proper care at that point in time? That’s something that and I do see it as a global issue in terms of diseases like this and epidemics, just in terms of the lack of proper care and just not addressing things when they need to be addressed. So going back to my own timeline. I just continued, I pushed through, I kept going. I went to one of the top-performing arts high schools in New York, I continued a very rigorous forming our schedule and then I pursued my bachelor’s in Fine Arts in Musical Theatre and Dance at the University of Buffalo for my undergraduate degree going, going, going, going. I booked one of my first really professional summer stock tours and performances right out of college and I went into it knowing I wasn’t well because these symptoms that I had in childhood just kind of magnified and waxed and wained which is a very typical presentation by itself. But when you go to doctor, after doctor, after doctor and even some, some totally rejected what I’m saying. Even though looking back, my symptoms were typical textbook Lyme symptoms in terms of chronic fatigue, joint pain, sensitivities, allergies that I never had before that are all of a sudden coming up.
So you get really discouraged. But again that those were secrets that I harbored. So on the outside and to my friends, acting in conservatory school, people I was doing shows with and who I was collaborating with no one saw that except like a very select few people were really close to me. One of my roommates in college, he was bringing me to a lot of these doctors around town and trying to get me the help I needed. But we had work to do like we had stuff to do. So it was, on the sly, on the side in between classes in between shows. Just trying to do the best we could. But, and I’m very lucky that I had that I had that support and that’s another issue, the lack of support, the lack of isolation, that so many people who fall into the category of chronic illness face. And I worked really hard to try to reach out to these people who need support through additional platforms, representing their stories through the lens of the arts because it’s needed.
“And I began the journey of going to doctor after doctor. Top New York City doctors, infectious disease, rheumatology….Valerie Rose Yawien
Why me? Why do other people have this? Do we have the same causitive agent or, is there something else going on?”
So I just kept going and going and going. And like I said, when I went to that summer stop job that had touring elements around the east coast, my body had a complete physical breakdown. So at that point I had to leave the tour, come back to my native New York and this was in 2010-2011. And I began the journey of going to doctor after doctor. Top New York city doctors, infectious disease, rheumatology. Again just like stating what had become a memorized monologue to me at that point in my story and my symptom makes up what I thought was going on in all the research that I had done. I thought there was something inflammatory going on in my body. After maybe a year and a half to two years, I received the label of fibromyalgia and I also managed endometriosis. So I had those two kinds of autoimmune inflammatory disorders as a label, but, something inside me told me, and again I had the textbook symptoms of Lyme but I didn’t know about Lyme. So there’s something inside me that told me fibromyalgia literally means pain in the muscles.
So why? Why me? Why do other people have this? Do we have the same causative agent or, is there something else going on? So I actually a few months down the line more so thinking about this, just pulling back for a second, and showing the scene in terms of other Lyme patients that , we’re now looking at a major, we’re looking at a major, major delay, people receiving proper treatment because of the lack testing that’s accurate conventionally and also because the lack of knowledge of how to handle and properly diagnose Lyme symptomatically at the start. So this is a major issue and this is why we see a lot of chronic Lyme patients dealing with symptoms that are incredibly difficult to eradicate and why their treatments take much longer than they should. So that’s a really look at in terms of what are the major issues that are impacting Lyme patients today.
So I actually was CDC positive for Lyme, which is rare because as we know, conventional Lyme tests are looking at the antibodies or the immunological response, which can be delayed because of the Lyme bacterial infection itself, not to mention co-infections and how they scramble your immune system. So I was able to take that test and say, okay, so this is what’s going on. So then I began the hunt, literally medical doctors, who basically have a specialized knowledge specializing in Lyme and co-infections . And I began that journey, which was another two and a half year chapter. I tried many different protocols. I was so sick at that point that it’s very hard to say like what did what and what made things worse potentially, because I do believe the sequencing was out of order, but that’s really no one’s fault because there are no set guidelines for how to handle this disease and what it comes with.
So again, just like looking at this broader perspective for fellow patients, we need to streamline this process and I am grateful that at Innovative Medicine with Dr. Szulc, that for me personally, that process just made a lot more sense. And I can get into more of what that means to me later in the interview, but it was a relief to land in a place where things started to add up as opposed to, let’s just try this and let’s try this and let’s try this and I don’t fault any of these doctors who are spending two-plus hours per case with their patients and they’re innovative and they’re thinking and they’re doing the research and they’re in the lab, they’re trying to figure out what’s going to work. There is sort of a surrender to the process of – We have to just try to see what happens to the body with this disease was undiagnosed longterm. So now I have a little bit of space. I can reflect back upon like what that narrative was, what it was when you’re really sick and you’re in the moment, it’s terrifying because you don’t know which way things are going to go. So luckily through a lot of strife and a lot of really bad reactions to treatment that my body just wasn’t able to handle. It’s what I needed on the paper and what my bloodwork was reflecting I needed. But I literally was just getting sicker and sicker and sicker. And then I began the process of rebuilding, which I’m happy to say I have continued on that path with a few hiccups along the way, but I’ve learned what works, I know what to do and it’s just about continuing that in a regimented manner alongside my work.
It’s part of my rehearsal schedule, and part of my lifestyle to integrate eating a certain way, making sure I’m on top detoxing and just taking care of myself in a way that I didn’t know how to do before. So yeah. And that did culminate in the creation of what started as a digital platform and launched in 2014 called Artists Bite Back and the inspiration behind that was create a place for people who are isolated to feel the support and know that they’re not alone, but the actual, =original seed was when I was still in pretty aggressive treatments. I was meeting fellow performers, dancers who had been taken down by this. Visual artists, directors, and we were all in this, place, we want to have a place where we can share our work. We’re working through this because that’s what we do as artists. That’s what we know to do is to take experience, to channel it, and express it in a certain way. That’s what our lives have literally been about.
So I just felt their pain. So became about having a forum where people would share when you were working on before getting sick during their treatment. Also creating works of art to them and therefore that would be a reflection of what hundreds of thousands, if not millions of people are dealing within the category of chronic illness and autoimmunity. So yeah, we took it step by step and that’s where it started in a very grassroots and communal artist collective and then we’ve been able to broaden it out to a feature film and a photography project to represent aspects of this experience in a way we know how because everybody’s voice deserves to be heard. Our mission. So it’s been similar to how energy medicine has really helped me to integrate this experience literally physically, neurologically, and also spiritually in how I look at the world in how energy is reflective, everything is connected, and just to be kind too.
That’s become the integration of a really difficult experience instead of moments and circumstances that, you just don’t know if you’re going to make it through into not being afraid to talk about what happened in an effort to make sure that others know that, that space is available to them. That’s especially important in the climate that we’re living in where everything is so heated and overblown and it has to be and you have to have the space to say how you feel and stay in your power. But my work has become about how to make that proactive and how to move everything forward. So that’s pretty much where I’m at today. And I just really hope that for people who are listening, who may be in that moment where it’s like so dark that you don’t know if you’ll make it through to tomorrow, all of us possess the inner strength to push through and know that if things are really bad right now, it doesn’t necessarily mean that they’ll be like that in the future and to just keep going.
Caspar Szulc: 20:25
It was powerful words and they ring so much truth. And I’ve heard others that have been in a situation of despair. They’re out of it, that echo that and I want to talk more about your organization, Artists Bite Back. And we’ll get into that shortly. Cause I truly believe that a person’s journey and healing really start when they end their treatments almost. And when there is some field and then begin on a new journey. And you did that in such a wonderful way of almost paying it forward and helping out. And that’s a lot of what I believe the story entails in healing and healing is a lifelong journey. But let’s go back a little bit because your story again is similar to many that are jumping from doctor to doctor searching for more. Did you ever at any point though actually ask questions to the doctors of why or did you just have that faith? Because I know so many times you’re right. It’s not that the doctors are trying to do bad. They’re trying their hardest. They just don’t sometimes have the tool kit in front of them. You know what I mean? If you’re just armed with a hammer and told to rebuild a whole house, it’s going to take you and you probably won’t be able to do it. You need wrenches for the plumbing, you need all these other things.
Valerie Yawien: 21:40
That’s not the most efficient way
Caspar Szulc: 21:42
Yes, yes. And so there’s no fault here. I never say I want to guilt any doctors for this at all. I think all doctors go in with this really benevolent way of trying to help everybody, but they’re just not armed sometimes. But did you ever at some point start to question that and start to ask, but why? I understand you gave me fibromyalgia as a diagnosis. I understand where you’re coming from, right? Is that something you finally got to, or
Valerie Yawien: 22:15
People who know me know that I’m not a quiet person and I come from, I don’t know if it’s because of Brooklyn or it’s because I’ve been around the expressive arts like it’s probably some kind of combination of these things where I just have always had a need to advocate for myself and really for others and to stand up and push. That doesn’t mean that there were elements of my personality that were inherently learned socially in terms of, being a woman or people-pleasing or coming from a place of complacency. But I’m pretty, I really advocate for what I believe in in a very pointed way and I’m not really afraid of pushback. And if anything, this experience has made me stronger in my own self and in my soul of what that means to me, what that means in terms of helping others. So when I was going through the process of the doctor and I got what I felt were unsubstantial diagnoses, I wasn’t shy and I didn’t hold back. But I agree. Just going back to your earlier point, that it’s not necessarily helpful to view doctors or the medical establishment as the enemy. I feel a kind of keeps this whole set of circumstances trapped in a certain way of looking at things. And again, when you’re really ill, it’s very easy to the angry default and you need someone to blame. So this is never a system of fellow patients or how they navigate this really difficult journey but I do believe that a lot of my doctors were very well-meaning. I do believe they did the best they could, it was what they knew and what their practice was grounded in, but I certainly said why and asked why a lot and said, well, why me? Like not in terms of pictures, but like what about my biological or physiological makeup led me to this place? Because basically I was willing to do anything I had to do to get out of this situation. I did question and it was strange the way Lyme itself came up sometimes in terms of the feedback, but then didn’t other times and it shows that it was totally inconsistent. And when you look at Lyme itself, there’s just so much misinformation about what it is and what needs to be done. Yeah. Doctors and patients just seem to be caught in this pattern of not getting to the root of the situation of what we need to do to get patients better. This pattern of not getting to the root of what we need to do about the situation to get patients better care. So yes, some doctors would say, yeah, you could have Lyme. Some doctors said my CDC positive panel, which is very difficult to acquire because of the standard that is in place in order to be diagnosed as a Lyme patient by CDC standards, that it was a false positive when I was literally like the most textbook presentation of a Lyme case. So it was really inconsistent and that made me aware that I had a lot of work to do in terms of being my own investigator and my own advocate. And that goes into the realm of patient advocacy and what we can better do to help patients be armed with the tools to get what they need for their health, but again, when you’re really ill, like how do you do that? How do you manage that? And there really are a lot of gaps within the Lyme world and how to bridge that gap.
Caspar Szulc: 26:13
Are you a proponent of the diagnosis of Lyme or do you fall the camp that really Lyme is a word that has so many different meanings now that perhaps we should even not use it as much because everyone’s case is unique. It’s usually co-infections and it’s not just Borrelia, which is we connect Lyme to Borrelia and that’s it. That’s not the case. Right. As you know. So what, what’s your take on that?
Valerie Yawien: 26:37
Yeah, and that’s a really interesting point and I’m really important when to touch ion especially in these times within the Lyme world as we’re coming the against rule controversy back and frankly gaslighting of patients that fall under the category of chronic Lyme, which means a person who receives their CDC guidelines, in 28 days of antibiotics but they still have residual symptoms. So the term post-treatment Lyme syndrome or chronic Lyme are really representing these massive patients which last time I looked is around 30% of the patient population within the category of Lyme. So it’s really important that we as a community because so much about the cause of Lyme has come from patients speaking up for themselves because unfortunately, that’s what’s had to happen in terms of the masses that are being impacted, so I do agree, especially in Lyme we see more and more there are more strains of Borellia being discovered practically like every few months in terms of European strains, in terms of hybrid strains, in terms of strains in the West Coast and the Bay Area. So I think it’s important not to let go of the root cause of what could potentially trigger the disease, which is a syndrome of a set of symptoms that are really debilitating and do have a crossover with chronic fatigue syndrome and all of these neurological conditions. But it is time for us to, in terms of them being the root cause being a bacterial infection, that’s the trigger. But I think it is time to evaluate how we categorize this disease because like you said, some people could have more severe cases of Asia and the Borrelia was easier to clear for them, which is actually what happened in my case. It took much greater treatments and much more aggressive treatments to clear up ECM. Multiple straights well illustrate from Europe as well that I had acquired when I traveled as a child, out of my system as opposed to the Barella, which seems to maybe be the initial thing that I acquired. But then you have all of these other stealth infections that come in, which you really do seem to perpetuate an immunological collapse.
So it is so patient-specific, and I have to say it does always seem to come down to the inaccurate testing conventionally. Because if we don’t have the markers to track progression, we can’t know what’s doing what we don’t know how to categorize what’s going on in our own bodies and how to best advocate for ourselves and ultimately usually fight for what we need. So that’s a long-winded way of saying that. Yeah, Lyme is an issue. It’s a tick-borne disease, an infector born disease. It seems to be an initial trigger, but there are a lot of initial triggers to syndromes like this. You have environmental toxicity, which you were talking about earlier. You have any type of microbe that you can be exposed to early in life and then you have a stressful incident, emotional incident, death in the family. Any kind of jarring thing that really gives your immune system a hit and all of these things can come to the surface.
So for me with my journey, even though I’ve really been able to track a lot of it due to meticulous bookkeeping and just having to really stay on top of my care, like honestly, that’s the only way that I was able to progress as far as I’ve gotten. And that brings up another set of issues in terms of like not everybody has the resources or capability or the family or friends to help them through that. So it’s really, there’s a lot of injustice surrounding this cause and always the scope and the lens that I look at an activist and a social like someone’s who’s connected to soul ethos of communities. But I don’t know how we would go about re-categorizing and what that would entail. What do you think?
Caspar Szulc: 31:24
You know, you could go the radical way where you throw out, you know the diagnosis altogether because that’s not what you’re treating off of with Lyme. You know the problem I’ve always seen and looked at so many different patients that have gone through, Lyme and had the same story classified rheumatoid arthritis, right? Where it’s classified fibromyalgia, CFS and you go into the neurological, some ALS that’s, there’s so many and they’re treating it off of that. Correct, that each diagnosis, let’s try this because this is the set protocol and you get worse just as you did and then you try something new, but you’re just trying off the diagnosis where in reality the only true way is personalization because Lyme is not Lyme. It’s your Lyme. You’re going to have very different Lyme than the next person and the next. That’s why you know the approach where you go in with total personalization where you know whether or not you have a diagnosis of Lyme, the treatment may be completely different from person to person. So it does complicate things because you’re talking about changing the whole way we treat people, especially through the conventional route. You need a diagnosis, you know there’s a whole center in the CDC for undiagnosis. What do we do? We don’t know what to do.
Caspar Szulc: 32:40
Why not just kind of get rid, I understand everyone wants to put a name to themselves, but if I told you my name is Michael, that doesn’t tell you everything about me. It just gives me a name. Right? But who I am beneath that. So many other things, that what makes me and unique.
Valerie Yawien: 32:55
And also with personalization then you get the built-in sequencing. And I do think that a major, as I said earlier, that a major aspect of issues that Lyme patients come up against is either having to field their own sequencing, treating things like the symptoms of here. Because like what else are they supposed to do? If you’re self-treating and you don’t have the resources to go to a doctor or you don’t have a doctor or you’re not able to travel because you’re ill at that point you research, you do your own research, you find information online from credited doctors. And I have to say I’m really grateful that there is a lot of data out there that well a Lyme specialist put out there with the hope at least people can at least be armed with the information. But it is something recently that I’ve been observing trying to like put a lot of these things together and track them.
Recognize where the top five things that people have issues with and then what can I do and what can my team do and I know you do the same thing with your team at Innovative Medicine. We’re kind of just sitting around and brainstorming about ideas about what can we do that can address these top issues for the most amount of people and people when they have skin manifestations or they have symptoms that are typical to a certain co-infection that’s proven, that’s widely accepted even by CDC standards. If you have Bartonella / cat scratch fever and you have the markings on your skin, you know my Bartonella is flaring up right now. So you reach for that a bar white or your homeopathic or you get your rife machine and you put in your Bartonella frequencies. And if anybody’s listening to this, and this sounds alien, these are just alternative methods of treating these infections besides antibiotics that are vibrationally based, that are based in the realm of physics that Lyme patients have seen that they’ve worked and that they have to go to when other things fail them. Basically pharmaceuticals. So yeah, sequencing like treating symptoms, like treating things when symptoms come up, going back to the personalization is not necessarily the best time to do it because just because something’s exhibiting itself doesn’t mean that there weren’t a cascade events, of again unidentified things that are connected to the Lyme experience, the symptom representation, but the Lyme bacteria. So if you don’t have that data, you don’t have the personalization. If you don’t have the blood analysis, then you don’t know what’s going on in your body in real-time. At least some people can intuitively figure out or muscle test themselves or however, they can get to that place. But the personalization would allow you to track things before they become really bad basically. And it is sad that Lyme patients have to get to that point where they’re visibly or neurologically experiencing the set of symptoms and they have to self-treat in moments of desperation. And that’s something that makes me sad.
Caspar Szulc: 36:20
And you see a lot of that. I know when we put out the information we get calls all the time and basically saying, how can I do this all myself? And a lot of this, you know, is very difficult. It requires a technician. You can’t do true hydrogen peroxide. A lot of people see H2O2, right? They think oxidative therapy, it’s good for infections. How much do I drink? And it’s like, no, no, no that’s not H2O2 therapy. Please don’t do that.
Valerie Yawien: 36:43
They have to be monitored in a medical facility.
Caspar Szulc: 36:47
There’s a difference between lifestyle adjustments, between things you could do at home that will absolutely improve your chances of getting better and medical treatment. And I want to touch on that in a second, but I also want to go back cause you brought up a really good point. There’s a ton of information out there from Lyme literate doctors, from patients, everything out there. In my assessment. I think it’s almost too much information. Meaning it becomes overwhelming. It’s counter-indicated, it’s this person said this, but this person said this. How did you navigate all of that to get, because you said meticulous research and you were just writing everything down and I’ve seen it, I’ve seen patients come in with binders of research and it’s like wow, you really do your research. But how did you get to a point where you are able to utilize all that information, make sense of it, and get to a place where you are now better as opposed to many who come in with binders and just keep collecting, collecting and do not get better.
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Valerie Yawien: 37:46
Wow. So that’s a really good point and I’m looking for ways to say this without seeming like I do this, but others are not coming at it from that place or point of view. If I think about it analytically, I think it may come from my theater training. Just years. I’ve always been research first. I made a point for my undergraduate education to go to one of the biggest research universities, which coincidentally happens, I mean Buffalo is an amazing place for growing medicine and research innovation as well with their cancer institute. When I was in Buffalo I saw amazing doctors and it’s just that, they didn’t know about Lyme. But just my background and my with originally performing in New York during my childhood and just being taught how to source your materials and research your role and do all of that work and I’m naturally like a very academically driven person and so that was a really great pairing and I think maybe being involved in that career fortified that part of my brain and just how I went about doing things.
I’m an interesting hybrid. I have to say I’m like type A and also a free thinker, so if you can like back your stuff up with your theories and ideas you have about humanity and what you ultimately want to bring to the stage and to your art in terms of performing arts, it’s a lot of work and it can literally drive a person insane because my mind is always working and then I do have a bit of overactivity in that realm. I will say I’m like a total night owl, just constantly working, working, but that allowed me to have those skills that I was, that was from my training that was reinforced in undergrad actually I was a research assistant on a few books. Because you know, 30 credits a semester wasn’t enough. Like bring it on and read me more. So yeah, I think those were skills I had. So that was the foundation. But then looking at it I was just so desperate to get better. And so that desperation is really what drives people to just find the answer. And again, there are issues with the whole idea of finding the answer. There’s never going to be a single answer. So those two in tandem really drove me. I’ve also been a person who’s very in touch with my intuition and very in touch with emotions and also in touch with the emotions of things around me. I’m a tried and true empath which also made this experience as really difficult for me sitting in patient waiting rooms and feeling everybody’s pain. That’s why I’ve always had to channel my art. Again, looking back at my childhood, you don’t know then as a kid, but like if you need a place to put it out and channel it through I think that is good. But yeah, just those two and the drive and I never give up. And again, if you’re really ill that’s difficult, but it’s almost like the stakes are even higher because you don’t know if you’ll be alive the next day.
Caspar Szulc: 41:17
Well, that’s what patients say when I speak to them. It is about my life depends on it. This isn’t researching a new car, which ones safe? Is there anything like that?
Valerie Yawien: 41:28
They can help you like categorize and they can help you get to your appointments and they can sit with you during certain appointments they can listen to you share about your appointments, they can sit next to you when you’re getting your IVs. Ultimately I really did learn something that you have to do yourself, which is so difficult. At least for me, that was my experience and that was my personal journey through it. And again, just honing in on my intuition and in terms of how I was able to pull it together very quickly. It was I have to do this because I have to save my life and also I’m able to look through things and scan through them very quickly and just know what it is and put it together and that’s because I am very into my body, and that’s why it was so painful when I was so sick and I couldn’t get out of it because I should have. I felt like I should have been able to do it. And the process emotionally, it’s very hard to realize that we’re programmed to rely on someone else to save us in terms of the doctor, patient relationship. And that’s something that Dr. Szulc really was amazing about teaching me. I remember always every appointment and I’ve been seeing him working with him for a few years on my case, but the early appointments, he always instilled in me that we’re getting your body to a point where it will heal itself. We’re getting your body to a point where the human intelligence will take over, that it was always about empowering the patient and letting him or her or them know that they have the power ultimately to heal. And that was a really big moment in terms of shifting my perspective of I can do all this work and that can come with all of this information and I can put it all together but ultimately there is a part of like you have the knowledge that you have to trust and surrender that your body has the ability to do what it needs to do if given the right tools, right, if under the right circumstance and if you have the right lifestyle to support it. And if you have a practitioner who is listening to you. But that was also a very important moment of you have all the research, but also letting it go. But now you get to that point when you get to that point you need it. Because it’s like your armor and if you’re going to doctors who don’t understand or don’t know, you may literally be in a position where you’re educating them and hopefully they’re open-minded enough to hear you and look at the articles as opposed. I mean these are published medical journals. They’re not just out there, and even if they were out there. You should respect what the patients bringing.
Caspar Szulc: 44:16
And if there are any patients out there going through this right now and doing the research keep going down that route. But what you said, Valerie is really important. At a certain point, you have to be in tune with your body and you have that give up a little bit of the logic to some intuition. I think you gather as much information as possible, but then you have to start to discern what is true for you versus I don’t feel as good about it. I’ve spoken to so many patients and whether they go to religion as their faith or they just say gut feeling like, good investors get gut feelings about things. Warren Buffet, you know, that’s just, I think being truly in tune with your body. And a lot of times that’s hard when you’re sick, but practice that, right? Use the time after you do the research to sit alone, be introspective, maybe meditate, whatever it is that you do and just start to get a feeling for something and say maybe this doctor, this approach or this and just get a feeling. Cause every patient I’ve spoken to that ended up at our center, we don’t advertise, we don’t put it out there. No one’s heard of us. I mean we have doctors that knew everything about the fields and never heard of our center. It is like a little hidden gem. But as soon as they heard something about it, it was like a light bulb. I just want to go here and see what it’s about. And they came and then they felt better after, going there and hearing a little bit about it and they there their interest some it’s not, I’m not saying that everyone just, Oh this is for me. No, your truth is going to be different. How you feel will be different. But that’s why don’t always listen to everything everyone’s saying and expect that if you do the same things you will get just as good if not better.
Valerie Yawien: 46:02
I really like everything you said. Basically like we could summarize the entire episode in that paragraph. Every sentence was so important in terms of the patient experience. So really quickly I worked with the practitioner and she shared with me similar advice. She said I was feeling really lost at the time in terms of just my symptoms were out of control. My skin was really manifesting a lot of very difficult neurological symptoms and sensations. I was like, I don’t know, there was mold in my apartment and like it showed them blood work, again, conventional blood work that I had no matter, but just to say there’s no disputing this, stop gaslighting patients. But anyway I had mold toxicity and mycotoxins and I was working to detox them out and then we cross-checked in like I do by testing the air in the apartment I was in at the time and it was the same mycotoxin that was coming up with my blood. And looking into that mycotoxin to produce similar symptoms to what happens in representing. So I was able to like pull it all together clinically, but at that point and at that juncture I was still really unsure about what to do treatment wise. I was like, should I do this treatment? Should I do this binder and detoxifier? Should I do this type of clay? I don’t know what to do. I know what this seems to be and I know what I have to do but I don’t know how to go about it. And I was really a very anxious time and it was just really difficult. And this practitioner said to me, she said, find a quiet space when you’re home, close your eyes and just simply ask your body the question, what does my body need right now? What does my body need? And within seconds the answer came to me and I moved through that phase of treatment by always taking a pause and taking a moment to do that daily check in to do that hourly check-in, to do that minute by minute check-ins. And I really found that to be so helpful and grounding and so simple. When she shared that with me, my mind was simultaneously about how simple it was and how basic, and how you don’t have to pay for it. If you can’t get to a doctor, you don’t have to like to transport yourself to a doctor to get to them. All these things that are obstacles for Lyme patients and autoimmune patients when they’re really in a bad flare, you can do it. You can find that within yourself. And that was an essential tool in terms of tracking at that moment in time. And that is something that all of us can do.
Caspar Szulc: 48:46
Right. And that question, what does my body need to get better to be healthy in its natural state of health?
Valerie Yawien: 48:54
How do you ever return to homeostasis to find the balance? How do I not overwhelm my system?
Caspar Szulc: 49:00
Yes. That’s the basis of what we say innovative medicine is when people like what is it? You know, it’s utilizing all the tools. Now, the only difference I would say between the medical approach and what you just said is that in the medical approach, you’re using different therapies that are sometimes invasive. There are some times you need a technician or someone trained to do, but you can still answer so many of those questions and do so much good for yourself by just answering that and being truthful with yourself. You brought up a few things there that I want to go back and touch on. You talked about mold, you talked about skin conditions and I know before we even started this, we quickly brought up the issue of Morgellons disease and the idea that you know something that feels like it’s crawling on your skin. It’s a very common thing I’ve noticed when I speak to a lot of patients, not just Lyme but infectious disease or neurological. Can you go a little bit into your experience and kind of what you learned?
Valerie Yawien: 50:01
Absolutely. So at this point in time, it was 2015, so I had successfully completed the antimicrobial set of procedures with Dr. Szulc at Innovative Medicine and I seemed to be moving. I didn’t seem to, I was, I was moving fully in the right direction. Again, a step back, a step forward. We’re really constitution restored, strength restored, color in my face restored, seizures no more. Just feeling like I was coming back into my body from an insane amount of trauma that was induced. I mean, I don’t, this is just a fact. It’s not like pointing blame or making an enemy, but was induced by what I went through with the medical system. Gnarly pelvic pain procedures that I had to go through for my endometriosis and just like body being ripped apart and put back together and just trying to rebuild myself was very difficult. So I found my way through all of that and I felt myself getting better and better and better and something at that point in time hit me like we were talking about just like a brick wall and it seemed to be a common thing. I wouldn’t even classify this as a traditional relapse because in terms of a relapse of Lyme and co-infection symptoms coming very strongly out of nowhere of just laying a person out because the symptoms that I presented with I had never had before in my life.
And also within those three or four years where I was aggressively pursuing Lyme treatment, that was again, like 10 plus years late in terms of diagnosis. So I had just like an incredible over sensitivity to everything. I became overly sensitized and my physical body like changed color. I was having an extreme what looked to be autoimmune process of skin coming out of skin and it was really unbearable and I did have, and this went on for a long time and went on for a year. In terms of the symptom of the constantly like radioactive, almost scattering. Like, if you looked at a TV and it was left on and you see that cloudy image, that’s what the surface of my skin felt like and it was impossible to sleep because how could you sleep when you feel like your body is literally electrified?
So me at that point going deep into what worked for me in terms of healing and again, having a pick line and a port for almost two years and doing IV and antibiotics and doing a lot of conventional treatments through Lyme literate doctors and infectious disease doctors and rheumatologists who saw the severity of my case and gave me what I needed. But again, I was still really ill and that’s how I found my way to Innovative Medicine. I resinated, no pun intended, but I resonated with the field of vibrational medicine and physics. And I wonder if it’s because of my life as a musician and as a singer that I immediately got like what vibrational medicine meant and it seemed to literally be a perfect match for my system. And I could talk to Dr. Szulc about what came up with utmost and what natural, what and what the frequencies were and I was quickly able to program my own zapper at home and that worked for me. So I was deep into that realm in terms of my studies, in terms of researching again what treatments and protocols seem to work for me neurologically and physiologically. And when this hit I immediately felt intuitively like my body was upside down or something and that my polarities internally and it was really strange and there are still aspects of it that are, I can’t explain, which is something I have to make peace with, but I can get what I can get from the blood work I have from that time and seeing which levels were off the charts and elevated and seeing which antibodies were crazy low and something flip-flopped. Something within my system went awry. And that could come from poisoning. That could come from, you know, an extreme exposure, which I do have a clinical history of. Why things hit you when they hit you. I don’t know, but that goes back to like things can be in your system and if it’s like a house of cards, like if one thing is pulled away or you think of like playing Jenga, you move one piece and everything collapses. So I had to rebuild from that and I’m very happy and immensely grateful to say that everything restored. I did a lot of PEMF therapy, pulsed electromagnetic field therapy. I just had to magnet, reground my own body. It’s really crazy. And in terms of Morgellons, there are different causative agents that seem to be out there. Which patients attribute to that set of symptoms? I don’t know. I don’t have the answer to what it is or how it happens. I just know what happened to me and what my data shows. But there clearly needs to be more investigation in terms of just these conditions that are the fall between the cracks of conventional definitions of disease and it’s really, really troubling that’s so many patients are having these experiences and don’t have the ability to get the care they need. So I don’t know what the answer is for that. From the Innovative Medicine point of view that would, that would be where you guys come in cause that’s what you do.
Caspar Szulc: 56:27
It’s a tough one to answer. Right. And again, it’s so unique. It is a real thing. And again, I hear about it from lots of patients that just go through, therapy in it and you could look at it from many different that it’s not truly anything biochemically you know, there, but energetically in medicine, that’s the thing. That way you can look at it as, you know, toxic exposure or something coming through the last organ of elimination. Right. Which is your skin, right? Overburden of the liver, the detox process being too much on your three organs of elimination. So happening there and then pathogenic. Yeah, there’s so much, but I think now, some of the therapies, and again this is personalized, but some of the therapies we mentioned PEMF, of course, post electromagnetic field therapy can be valuable. A biofeedback, you mentioned you work with a psychologist on hand there and my mother who helped of course.
Valerie Yawien: 57:20
Yeah. Actually interesting biofeedback was really helpful in terms of diagnosis at that time because we had an idea of what was going on and what Lyme co-infections could it be causative agents for this whole expression disease, but the biofeedback was able to pick up on things. I was really trying to figure out what the hell was going on. Things like biofeedback and scanning I really hold to a very high degree and I think they can be really complementary in terms of you have your vibrational and you have your diagnosis. Even though things through biofeedback that come up could be passed or could be not current, it’s still helpful to just have a scope of what to look for and where to go and then with the being able to clear and I mean biofeedback for years as well, but being able to clear and rebalance and reset the organs along with the detox IBS are what brought me personally. That’s another, I mean we could go on and on. Another obstacle in terms of live patients, because with me, I so needed these treatments in the beginning, but my body was so overburdened and my whole like now I know all this because I learned it through the process of being treated. But I was probably in a hyper acidic state, my body was more habitable for these illnesses. So it’s tricky. Lyme patients really need help with the detox modalities. And again, if you can’t really give an IV to yourself, can’t make up these things by yourself and in order to detox the tissues and infrared sauna and you have all these things. But I wish there was a way to help patients detox more excessively.
Caspar Szulc: 59:32
Valerie Yawien: 59:34
I mean you have things like solunas and drainers and things like that.
Caspar Szulc: 59:36
Right? I mean, you brought up a lot of different therapies and for those who don’t know about the ACMOS method, that’s an energetic kind of advanced, you could say acupuncture, not using needles, but going into the different meridians using different substances, natural substances, even laser and electrostimulation to clear an energetic pathways and increased cellular communication, which then leads to better detoxification. You’re basically trying to get your body to do what it does. We have these amazing organs of elimination, correct, but they’re usually overburdened. They can’t handle. That’s why it’s really important that people do understand. There is no one method of detox. I sometimes get that question like, how should I detox? Whoa. That is a very loaded question because there’s so many ways. I know earlier you mentioned magnetically that that’s something you could do yourself, but there are ideas that can help you detox and other medicines from European biological type medicines that can help of course. I think the one big thing though that anyone could take away is that if you’re detoxing without supporting your organs, that can actually be a hindrance because you are now moving toxins around. Like let’s say you take an oral chelator, you know, and this is big, a lot of people do have heavy metal toxicity, especially when you have mold toxicity too. I see heavy metals there. When you have infections, you see usually see some heavy metals aligned with that mercury lead and you start to take these oral chelators, but you did nothing to get your liver, kidneys and lymphatic system going where it needs to be in. They’re sluggish and they’re not working. All you’re doing is moving those heavy metals around. They could end up in a worse place. They could end up in the brain and then your logical systems, and that’s going to cause a lot of reactions and you’ll be in a worse spot than you were when you started. So it’s very tricky. I always say, if you’re listening, really take this idea of detoxification and understand that you are detoxing all the time. It’s not that you need something else to do it, but if your organs of elimination are not functioning properly, that’s an issue and you need to address that first before you go to the more in-depth detoxification methods.
Valerie Yawien: 01:01:52
And I remember during my very first appointment with Dr. Szulc and I came into the office carrying the burden and the heavy experience of all the protocols that I had done, which again probably helpful but just totally overwhelming for my system at the time. But doctors, so we have to try it. And I just found myself in that cycle of just getting worse and worse and worse. And now recovering from that first experience and not moving forward, and I remember laying on the examination to people and Dr. Szulc checking all of my, like my pulse and all of my organ points. He was like none of your organs were working and I was just dead on the table, 85 pounds and just not functioning. And I do think that was an important turning point because at that point it was bringing in the salunas and the German biologics just to keep me sane and bringing in the detox IVs. I was able to get over the hump and that’s the only time honestly that I could say that I saw a real noticeable difference in terms of my representation. The one thing, it’s just a little tip that I initially forgot to mention, but want to make sure I say it. I’m sure people who are listening or have dealt with Morgellons or know people who have dealt with it, probably already know about, but using liquid B12 to help with the nerves is really important and that neurological sensation of the crawling and the feeling of electric, that whole your nervous system is just on fire and make sure you get the properly formulated and methylated form of B12 for those of us who have methylation defects and issues. Something if you could bring one thing in just like a really well-formulated liquid B12 it’s really important for any kind of neurological.
Caspar Szulc: 01:04:00
That’s great advice because as much as we’re talking about the person and there are those personalized elements to everything you went through, but there are patterns also in B12 is one of those patterns. I’d have to say that’s quite effective. You’ll see it across the board. What’s the one piece of advice? So you went through this personalized treatment method. You’re looking great today. I think you’re feeling much better. Correct? And we all say healing is a lifelong journey. So you’re continuing to heal. But if you can look back and provide yourself even with one piece of advice as you’re going through the treatment or going through this process, this journey, what do you think that would be?
Valerie Yawien: 01:04:39
I think it seems very simple, but just hang on, hang on for the ride. It’s so difficult when you’re literally in these moments because you’re feeling the sensations in your physical body. And so, I mean, if the layperson or someone who hasn’t had a severe Lyme experience is listening, it’s like when you have a really bad flu and you just have that fever and you feel like hell and you’re just like, this is a horrible, when is it going to be over? It’s that compounded by really severe neurological experiences and symptoms, the anxiety of the ongoing nature of it and not knowing when you’re going to get out of it, not knowing how long it’s going to be, not knowing what’s going to be the thing. Again, there’s problems with that. But when you’re in that place, I found myself, I went to that place of thinking like, what’s going to be the thing that’s going to get me out of this? So just hanging on. Definitely. It’s very difficult when you feel so ill, but honing in on those methods of meditation that can help you to disassociate a bit. But if you’re having cognitive issues, like that’s even impossible can seem impossible. Nothing’s impossible but can seem really daunting. So I guess I would tell myself, just keep going. Which luckily I did and was able to do. But there were times when it was just so, so difficult and I think another thing that I experienced at the beginning of my journey it was because I was so socially active and out there and known for certain things that I did in terms of my career and had peers and friends who were associated with that life and when I fell it was like a hard fall. It was a great fall. It was a big fall and initially, I just felt this obligation to let everybody know what was going on because everybody was really concerned and I think that added a lot of pressure for both myself and the people around me and there is a balance of how do you share and like what to share and how to represent this, but when you’re in it it’s really hard to have their perspective about what to do. But in the beginning, when I thought it was going to be easier in terms of finding a doctor that was a match for my case and finding treatments that would work and get me symptom relief, I would update my friends about the appointments, every appointment and they would always ask. So I’m very lucky and blessed that that was my experience. But it was really difficult because being an energetically sensitive person I found and looking back I could see that I was just living it and not letting the moment pass and trusting the process, which in theater and in filmmaking and in singing and all of these things in writing, it’s just about uncensoring yourself and trusting the process. So working so hard to keep everybody abridged on the latest was I think it had detrimental effects. But this is not to say not to, don’t sensor yourself like share your story. If people are asking how you’re doing, tell them and don’t be afraid to ask for help and ask for advice and all of these things. But for me personally, I think that the pressure of having to recount everything in real-time because I was just so scared was difficult. And I think that that had lasting effects in terms of just like my own PTSD. But that’s something I’m still exploring. I explored it through writing the screenplay, literally doing the most method and probably the craziest thing ever of reliving it again. Playing a character inspired by myself and also a composite of all of the amazing Lyme patients I’ve spoken with. Integrating universal elements of the narrative. Literally writing a biopic about my family and all we went through and how we were broken down and had to rebuild. And all of the things that came out in this about ourselves and our own secrets and our shared secrets and our own vulnerabilities and things we had to work through that were unresolved. And then when you’re put into a certain circumstance where it’s literally life or death things come out, like deep seeded things. So, yeah, I did it again, but this time I felt that I almost kind of course corrected that patterning of behavior from which I think I grew from and matured from and learned from that my burden isn’t necessarily everybody else’s burden. So it’s that fine line of being true and honest with people around you, but also understanding that for whatever reason, this is your journey and people are on their own journeys and there is a line that can get blurry. And I think I blurred that. I’m just being totally honest.
But with the film, again, I think I course-corrected it because the whole mission of it was to bring it to a global audience and do it in a way, represent the story that is so many people’s stories in a way that it hasn’t been done before in terms of feature as opposed to a doc. Docs are great. I love them, in terms of documentary films. I mean, but I knew that because I come from this background and I had those skills that I had to challenge myself and bring it to a broader audience outside of the Lyme community. And just represent what the story looks like for people, so that was my hope in terms of representing many people in a bigger, broader way and learning from, maybe this isn’t the most proactive way to talk about this cause this way in a film. It’s better. It has more of an impact and it has more potential for generating great change, which is what I’m all about.
Caspar Szulc: 01:11:22
So let’s talk about that project and also the organization that you created because that’s the amazing part. Again, I always say the journey of healing I think really begins after treatment. After you get better and then you kind of find purpose, passion, all these things, you become yourself, you find yourself. Everyone I’ve spoken to says through the healing process, I found myself, it wasn’t that I let go of my disease, it’s more that I found myself.
Valerie Yawien: 01:11:48
It informs you. A former mentor and professor of mine from the musical theater department at the University of Buffalo, he’s an amazing man. He, when I was first developing this project and I had completed the first table read of the script, I was emailing with him sharing notes and he was giving feedback. Basically I was just updating him on what I had been up to because last he saw me, I was on my deathbed. So I was like, no, I’m good. Like this is what’s going on with me. And our table read it. And he said, yeah, you’re doing informative art. And I just loved that because of the crossroads between education and public awareness and social justice and community outreach and art and film and media and communications. That’s where my brain lies and where my heart lies. And I think that there’s so much potential, especially in this digital age, to reinforce that and to push through the constructs of the entertainment industry and continued to continue to challenge that. It just shows stories that aren’t shown. So I think informative art is a great way to point out what we have going on.
Caspar Szulc: 01:13:00
And what’s the name of the project?
Valerie Yawien: 01:13:04
Sure. So the feature film is called, I have Lyme, the movie and what’s in a name, right. So what that, what is that title about? It’s about that moment where you receive the diagnosis. For me, it was over the phone. I mean, I already had my CDC positive Western blot and I was in the world of Lyme and I was being treated by the doctors I needed to be treated by, again, much delayed Lyme literate doctors and was obviously healed by that. But I also, being me, double-checked those tests and did the culture for Lyme through Galaxy Diagnostics, which at the time, this was before seeing Dr. Szulc, which at the time was, I don’t even think allowed to do in New York. So I went to Connecticut and did that. And just for people listening really briefly, the CDC, conventional testing tests, the immunological response antibodies or as the culture, it’s like a strep culture, a test for the bacteria itself as opposed to the immunological response so it’s much more accurate. So once I had the data that I tested positive for Lyme and my body and my blood view of the culture plus all the other positive tests, I knew I was on the right track. So the doctor from Connecticut called me and I was bedridden at that point, it goes way back to 2011 I believe, before seeing Innovative Medicine and all that. And he said over the phone like yeah, it’s positive you have Lyme. And my whole, even laying flat on the bed and literally sweating so much like the BCO, which was so bad at that point. Sticking to the sheets being in half delirium, that moment when I had what at that time was the answer was the most monumental thing and it’s, it’s about validation. It’s about having answers, it’s about direction, it’s about support, it’s about everything.
So that moment is different for each Lyme patient and each Lyme patient, especially chronic Lyme patients or post-treatment Lyme syndrome patients come to it a different moment in time in a different way. But that to me also when I was writing this piece represents the crux of the Lyme movement and what it is for people. Because this is such a, I don’t even know how to put it into words, how misrepresented and again, not, we’re not going to the place of victimhood because it’s not empowering and it’s unhelpful as an individual or for the cause, but how mistreated and potentially verbally abused Lyme patients are from their experiences within the medical world. So it’s about that moment where you know where you’re going and of course, being a movie about the Lyme journey it has many twists and turns and that’s almost like the facade of it like you think you know, but you have no idea this is the true story of Lyme disease. So yeah, it’s that moment of activation. And then there’s the decomposition and then the rebuilding of the story. So the tagline for the film is a story of recovery. That means what it means. It’s not the surface definition of what recovery looks like. It’s about how you rebuild and it’s about how rebuilding is not a pretty process at all. And it’s grueling and it’s difficult and it’s mind-bending and everything around you is challenged. Every part of you is challenged and you rebuild either coming into who you were meant to be or like you said, finding purpose. But yeah, not as a double play, but it’s not as simple as it seems and it’s so hard to get that simple label. And then you open Pandora’s box about what treatment with a chronic, undiagnosed autoimmune type of condition is and the work that it takes and the strain that it puts on everyone around you. But I think it’s very important to operate from a place of hope. So even though the film depicts, again, through an original screenplay and actors and reenactment of the story, but it depicts the ugliest parts of this process, ultimately showing that you come out stronger in the end. And I really want to make sure that message is emphasized for anybody listening.
Caspar Szulc: 01:17:50
I love that idea of the authentic look at it, right? Because too many people sort of glamorize it and I’m better now and look at me and I look great and don’t go into the struggle of it. And that is important because that’s a big part of it. Struggle is important.
Valerie Yawien: 01:18:06
Yeah, it’s a multifaceted experience. And perhaps this would be for another episode, but I did want to briefly bring up the subject of social media. Like when you were saying, when you touched upon how you think there’s like too much information out there in terms of how blind patients can kind of fall into the rabbit hole and be overwhelmed by it and not know which way to turn and lose touch with their authentic self of what their true needs are. With anything like this is the world we live in. So any kind of experience is going to have a crossover with what the trend or what is the main mode of communication. So, of course, these two things are going to overlap. I think there are a lot of benefits and there are also things that I find very concerning. So that’s another thing that at this current moment in time, while we prepare to take the film on tour and do all of these live events and our panel with our doctors and our experts panels that we’re looking at we’re evaluating and we’re trying to think of the bigger picture of how do you make things accessible to as many people as possible, especially aspect of the population that is potentially bed-bound and not able to attend things. Live streams or great. IGTV is great and being able to post videos is amazing and it’s wonderful and it’s free. And you know, it’s great. I can’t say it enough. It’s so, so great, but what harm could you do? Not not in terms of sharing educational info on the stuff that we would be showing in order to get to as many people as possible. so they have access But what concepts and ideas that circulate about Lyme? Are we reinforcing that or maybe not grounded in truth? So that’s something like when I’m looking at things and when I’m looking, I hold myself to the same standard. If I look at something and I’m about to put it out, but that’s not what’s really going on, and that’s not really what I believe in -I don’t do it. And if it’s like one less post a day, I don’t really care. So I am thinking about all those things that our team members are in terms of how do you utilize tools that are amazing, that are truly groundbreaking and revolutionary and changing the way that we communicate and how do we tap into that and help and not hurt the cause.
Caspar Szulc: 01:20:44
Right. And that’s really important. I absolutely applaud you on that because social media is a tool and a tool is how you use it. It is not inherently good or bad. It is what you do with it and you have to use it responsibly, and I think you’re going about that, especially when it impacts so many people that are looking for it or looking for hope, looking for answers and it is their life on the line. Again, this isn’t like a fashion decision.
Valerie Yawien: 01:21:10
Literally their lifeline literally has provided so many people, a community who are completely isolated from their family, their friends don’t understand. I mean they are alone and this has provided a community and that is saving lives. But when I look, when I pull back and I put on my either philosophy or again community activism side, and I look at the bigger picture of where this is going. I hate to use more trending, but where, where is it leaning? I have concerns, especially in light of what we’ve seen over the summer in terms of just horrific, really unfounded articles coming out in major publications that fully misrepresent the day to day life of a chronic Lyme patient and any other disease that’s comparable to that. It’s great. But when we get, when things get, when movements get caught up into the ethos of something like Twitter and that type of energy and the combativeness, it’s very harmful. And on the other side of it, people’s lives are then danger to put on the line because people are exposed to something like that in a vulnerable time in their life. That could be it for them. So I think now we are at the crux of a change in tide and how we represent chronic illness and the media and that is a passion of mine. Constantly exploring and individually with my team as to how best manage that. And if anybody listening wants to contact either Caspar and I send ideas or needs on this subject, please feel free because we’re looking to represent you and advocate for you, that’s the passion.
Caspar Szulc: 01:23:14
And where can they reach you? Find you? Find more about the film> Throw it all out there. Yeah,
Valerie Yawien: 01:23:18
So our Instagram handle, speaking of Instagram, our Instagram handles, so I have a personal health and wellness blog and it’s also my Instagram for Artists Bite Back, my company voice. So it’s @valeriebitesback. And then our organization, which is a hybrid of an arts advocacy organization and a production company is @artistsfightback. And the movie is, I have Lyme: The Movie and then feel free to reach out to me personally on my personal Instagram handle, which is more performing arts-centered. It is my performing arts work, but of course, I have a lot of connections with Lyme patients on that account as well. And know that I’m constantly thinking of you guys and holding space for all of you to get out of it and to get out of any positions you need to get out of right now and tap into your passions and be able to continue to do what you love because that’s what I do and that’s what I want for each and every one of you.
Anyway, it’s @valerieroseyawienofficial. My last name is spelled, I’ll spell the whole thing out. And I’m on Facebook as well at the same handles. And I’m on Twitter too, but I have my thoughts about Twitter, but wherever you guys are, wherever you’re most comfortable in, each social media platform has its own nuance. So wherever you find yourself, I am there. Feel free to reach out and follow the projects. We’re doing it for you.
Caspar Szulc: 01:25:03
Well Valerie, thank you so much. And if you’re listening, do reach out. I think we have so many ways that we can look up information now. It’s accessible to us 24/7 and information is good, but communicating with people who have experienced things is also incredibly important and connecting with other humans is essential. You could read data till the cows go home, but connecting with someone that’s been through it can be your source of inspiration and hope that gets you to your truth. It’s not saying that they have the answers, but I’m pretty sure Valerie can absolutely help you regain some hope and find some of your own answers. So do reach out.
Valerie Yawien: 01:25:47
Yeah, it’s about that shared experience. All humans, we’re all connected. We’re here to help each other out and then if something that is truly remarkable within the Lyme community is that it is the underbelly of this, everybody, just keep doing your and keep doing what you’re doing and have faith and know that there are people on the front lines that are working overtime to try to make this all better for you.
Caspar Szulc: 01:26:18
An incredible message to end on. Valerie, thank you for sharing your story.
Some important takeaways from Valerie’s story are to never blame those trying to help but simply don’t have all the tools to address the complexity of chronic conditions like Lyme Disease. I also have to stress how important it is to find purpose upon regaining health and to carry on that mentality of paying it forward. For Valerie, that was starting Artists Bite Back and developing I Have Lyme: The Movie, which is being released worldwide shortly. You can learn more about Valerie’s journey and gather inspiration and hope from it by visiting www.IHaveLymeTheMovie.com, becoming part of the Artists Bite Back community through Facebook and Instagram at their handle @artistsbiteback, or going directly to her website www.valerieroseyawien.com. All of this will be put up on the Innovative Medicine website under our podcasts section. If you know someone suffering from Lyme or any chronic disease for that matter, please share this podcast with them. Not as a solution to their condition, because as you heard, personalization is key to reversing chronic diseases and one person’s treatment plan does not dictate success across the board, but rather to show that there is hope, and to empower those who feel they have no recourse and will have to live with disease indefinitely. There are answers and there is hope – so keep going, keep forging forward, and create your own healing story. Till next time, this is Caspar Szulc, wishing you health and happiness.
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