EP 57: How Art Can Raise Lyme Awareness with The Great Imitator's Creator Patricia Cosulich

Raising awareness on Lyme disease can sometimes be hard when the process of talking about one’s journey is exhausting - that is where Patricia Cosulich decided to step in and create The Great Imitator. A documentary theatre-based platform for Lyme warriors to express their stories, build community and ultimately raise awareness to a wider audience. 

Tune in to hear Patricia’s own battle with Lyme, how she was inspired to use theatre as a vessel for activism, and how she plans to grow her platform in order to raise funds for the community.

PS: Dr. Rawls is a trusted MD whose life was upended by Lyme but was able to heal himself and use his experience to help others on their journeys battling Lyme. He is the author of Unlocked Lyme and the founder of Vital Plans, a supplement line made of herbs that supports the immune system (made especially for Lyme warriors). Dr. Rawls offers a free online survey that can help you get the right supplement protocol and on track to a healthier life. Go to lyme360.com/DrRawls to learn more about the amazing herbal protocol I have been using.

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To learn more about our podcast guest, click here:

https://lyme360.com/lyme-awareness-with-playwrite-patricia-cosulich/

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Transcript

 Mimi MacLean:
Welcome to the Heal Podcast for all things related to Lyme disease and other chronic illnesses. I'm Mimi MacLean, mom of five, founder of Lyme360 and a Lyme warrior. Tune in each week to hear from doctors, health practitioners, and experts, to hear about their treatments, struggles, and triumphs to help you on your healing journey. I'm here to heal with you.

Mimi MacLean:
Before we get started today, I wanted to talk to you about Dr. Bill Rawls. He has written one of my favorite Lyme books, Unlocking Lyme. He's an MD whose life was up-ended because of Lyme. From this experience, he had to change his practice and figured out how to heal himself. Dr. Rawls has created his own line of herbal supplements that support the immune system as a Lyme warrior. He offers a survey on his website to help determine which supplements you need. Go to lyme360.com/drrawls, which is D-R-R-A-W-L-S, to learn more about these amazing herbal protocols I've been using.

Mimi MacLean:
Welcome back to the Heal Podcast. This is Mimi, and today we have Patricia Cosulich, and she is a social innovator, playwright and Lyme warrior, and now activist, whose passion project, The Great Intimidator, uses documentary theater to change the way we view healing and fundraising through storytelling. Her work aims to find ways to integrate Lyme patients into society and help others understand the silent battle the disease can be.

Mimi MacLean:
To get my detox for Lyme checklists, go to lyme360.com/detoxchecklist.

Mimi MacLean:
Patricia, thank you so much for coming on today. I'm super excited to hear about your Lyme journey and also about what you're doing now to bring awareness for Lyme. So, welcome and thank you for coming. I would love to start out with you just telling about your Lyme journey.

Patricia Cosulich:
Thank you so much for having me, Mimi. I love your podcast. It's so informational and you do a great job. So, as far as my Lyme journey, we don't know for sure when I contracted tick-borne illness, but I was experiencing severe symptoms by high school. So, I think I probably had it by 9th grade, when I started having a lot of intense knee issues and headaches and fatigue, but it seemed easy to write off as normal stress of high school and being involved in a lot of activities and classes. But by 11th grade, it was obvious that it was extremely not normal, because I was struggling so much with fatigue, that sort of fatigue that you just feel like your legs are lead blocks and it's hard to walk.

Patricia Cosulich:
And I was extremely active. I danced. I went to the gym a lot, and for me, the biggest symptom was chronic daily headaches, that ended up lasting 24/7, for about eight years. So I had one headache that lasted about eight years, and that was... It was just a very weird sensation, and that and the fatigue were the biggest things. And so, I actually ended up still not getting a diagnosis until college. And like so many people, we experienced, "Oh, see a counselor." I thought it was unique to me, because of my circumstances, like, "Oh, well, you're just too stressed about school, because you're taking too many honors and AP classes and doing too many extracurriculars." And so I was like, "No, I know it's not that." And then my father passed away around the same time.

Mimi MacLean:
I'm sorry.

Patricia Cosulich:
Thank you. And so that was another reason to write me off as stress [crosstalk 00:03:41].

Mimi MacLean:
Yeah, exactly.

Patricia Cosulich:
And I was saying, "No." I was getting lab tests the day I got the call he died, because that means I had to have been feeling sick enough to warrant labs.

Mimi MacLean:
Yeah.

Patricia Cosulich:
You go that day. So I wasn't diagnosed until my, I want to say my third year of college, after a medical leave, and the rest is history. That was a few years ago. I'm feeling so much closer to recovered now, but-

Mimi MacLean:
So what would you say is the pivotal thing that kind of got you on the track of feeling better? Because there's so many different ways that you can heal, and there's no right answer. It's very individualized. Right? What do you think was the attributing factor to making you start to feel better?

Patricia Cosulich:
There were so many things. There wasn't one magic bullet. So, just starting to work with a Lyme literate doctor was the biggest step. And I usually am cautious about what I say about the treatments I did, just because I'm not a health coach. I'm not a doctor. I don't have any of those credentials. So, I just don't want to have anything ever taken out of context as medical advice-

Mimi MacLean:
No, but what you personally did. So-

Patricia Cosulich:
Yeah.

Mimi MacLean:
Because you went to a Lyme literate doctor. That typically means a little bit more heavier on the antibiotics?

Patricia Cosulich:
I did do oral antibiotics and I actually responded very well. Some people don't, as you know very well. Each time I take antibiotics, I was usually taking different ones that would address different forms of Lyme simultaneously. And then we were rotating them, posing them and rotating, so that I wouldn't be as likely to become resistant to anything. And so that the lime couldn't mutate as much. I don't know. There was a whole theory to it. And I also was taking herbal antimicrobials, additionally, and a lot of probiotics and binders, things for detox, a lot of things for immune support. So it wasn't just-

Mimi MacLean:
One thing. [crosstalk 00:05:37] And did you change your diet and do all that?

Patricia Cosulich:
Yes, I did. I did the hypoallergenic diet for a while, which was extremely strict for those who are familiar. Are you familiar with it?

Mimi MacLean:
No. I can only assume it's like an anti-histamine or something to that effect, where it's super... Any kind of vegetable or anything that kind of crosses, I'd assume. But-

Patricia Cosulich:
What you do with that one is, there's this long list of all these things that you cut out, and you do it for a certain amount of time, and then you control variables by slowly re-introducing one [crosstalk 00:06:10] at a time. So it's very scientific and very labor-intensive. And I also had done lab tests and I had leaky gut. So I had a ton of food sensitivities to almost everything.

Mimi MacLean:
Yeah. Usually that's like the linchpin. I think most people have that, or they have other things going on, if it's parasites or mold and whatnot. Okay. So you're feeling better, and I would love for you to just talk about what you've started in the theater realm of your activism. Like when did you decide to do that and what was it?

Patricia Cosulich:
Thank you for asking. So, it's been quite a journey to do that. I grew up in musical theater. So, people often ask why a play. I'm like, "Well, that's part of my life, that's why." Initially, following the diagnosis was, of course, so focused on surviving and getting through, that I didn't have a lot of energy to advocate. And about two years in, I started to feel a lot better. And when I started to feel a lot better and started to realize how much more capacity I had. I was feeling like I had more and more of my personality back and energy and could do more.

Patricia Cosulich:
I started to feel really grateful and then started to look around and see... I didn't know a lot of people with Lyme disease at the time. That was before I was introduced to the robust social media community. I was not a social media user. I had no idea that there was this world of people. And still though, I had heard about others and started to see how many other patients with Lyme disease were not getting better and didn't have access to resources. And I started to feel really angry about how much privilege it took for me to get to where I was and how many other people didn't have that.

Patricia Cosulich:
And so that's how I decided to start advocating. And it was definitely a shift to become so public about it, because I previously was not someone who wouldn't tell anyone. I would tell my friends and my family, and even professors and whatnot usually knew, but still to blast it on the internet the hardest thing you've ever gone through is different. I don't know. Has that been weird for you being public?

Mimi MacLean:
Well, it's so funny because... Like I would say the first time I had my Lyme, once I kind of got better and I thought I was going to be better, I was like, "I'm done. I don't ever want to mention the word Lyme again. I don't want to be identified as somebody who's a Lyme person." I want it over and not ever think back and look back. And then I relapsed. And so the second time I've relapsed, which has taken me a lot longer to get out of, is when I decided to kind of start embracing it, and everything that I'm learning, it's like it's a waste if it's just on me.

Mimi MacLean:
You know what I mean? Because I love reading and learning and trying new things. I feel like I've tried everything. So I feel like should be sharing that, right? Like, why am I just researching all this stuff and not sharing it? So, I did that. But it's funny that you mentioned that, because for years, I was like, "I should make videos," and I still don't make as many videos as I should, like on Stories because I am not as super comfortable. I don't mind doing this, but for some reason, live videos or whatever, it makes me a little bit more intimidated.

Mimi MacLean:
But, my point was, I knew that I wanted to do a video about me having Lyme, and I couldn't do it. I just couldn't do it. And it took me until... Was it last summer or the summer before when that woman wrote that New York Times article? Do you remember that article, when she said that chronic Lyme doesn't exist, and we were all making it up, and everyone kind of went nuts and was like, "Everyone tell your story, so this woman can see that she's crazy." And that's when I did a video, and I showed myself walking and how I couldn't walk like in a straight line, because I was neurologically impaired from my Lyme. And only up until that point did I have people reach out to me. Close friends being like, "Oh my God, I didn't realize. I'm so sorry I discounted what you were going through. I didn't realize what you were going through is that bad."

Mimi MacLean:
Because they always used to make fun of me for not drinking or leaving early or not going out or canceling. They would be like, "Oh, you're leaving again," or whatever, and I think after that video is when they were like, "Oh my gosh." I think a lot of people don't know, really, what we're going through. Right? You don't know until you're going through it. So, it took me until that New York Times article to actually start coming out and saying something and doing a video on my personal Instagram page.

Patricia Cosulich:
Wow.

Mimi MacLean:
Yeah. And so, where does your activism come in with the play? How are you using the play as your tool?

Patricia Cosulich:
So, there's this field called applied theater, that is the intersection of advocacy and theater. So, actually because of the symptoms I had, performing became difficult, which is how I became interested in playwriting. And I had always had an interest in different forms of advocacy, prior to becoming a Lyme advocate. It was just that it was never about anything personal. It was always an issue outside of myself. And so, it actually was a huge step to even take up advocacy for something that was personal. And it was a natural fit with my background to blend advocacy and theater.

Mimi MacLean:
So you wrote a play about Lyme, The Lyme Monologues is what it was originally called. Right?

Patricia Cosulich:
It was called In the Lyme Light Monologues originally.

Mimi MacLean:
Once you've created these plays or monologues, where are they distributed? Where can people see them? [crosstalk 00:11:55] And then also, are you raising funds? What are you doing with them?

Patricia Cosulich:
There will be an online Zoom reading this May 2021, May 6th. And I'm really excited about that. So, people can watch it, from anywhere in the world, which is going to be super fun. Because there've been readings in the past of working drafts of the script, but they were in person. So only a few people in... Well, there was a set number of people who could come. So, I'm excited to share with people from around different places. And it's also a new draft that no one has seen publicly before. I added two new main characters. It's changed quite a bit. And the goal is to use it for a number of issues that impact the Lyme community. So, not only awareness and storytelling, but also building community, like the experience of going to see it together and an unintended by-product of this project, kind of like you and your video that you made, where your friends started saying, "Oh, I had no idea it was that bad."

Patricia Cosulich:
And I was going, "Oh my gosh, I've been telling people for years," but when they read the play, they got it. Or at least got it in a way that they hadn't before. And I started receiving a lot more support, which wasn't even my intention. My intention was that it could do that for other people who weren't as far along in their healing and take some of that heavy lifting out of explaining. I don't know about you. I feel like explaining it is the most exhausting, draining thing in the entire world. And especially when you have brain fog, I feel like I can't explain it.

Mimi MacLean:
Yeah. I kind of have a quick summary I tell people now. I'm like, "It's like having arthritis, on top of Alzheimer's, on top of the worst hangover you've ever felt, with mono."

Patricia Cosulich:
I shouldn't laugh cause that's terrible, but it's so true.

Mimi MacLean:
It's true, right? How are you going to get the name out? How are people going to find out about it?

Patricia Cosulich:
I'm in the process of building a website. So, hopefully by the time this is published, hopefully the website will be live. And I've been meeting the community on social media for a long time. I don't know if that's how you're asking about distribution channels, but yeah. Social media, the website.

Mimi MacLean:
And when you say community, is it your own community or where are you kind of meeting these people, hooking into what groups?

Patricia Cosulich:
I co-facilitate the San Diego Lyme Alliance Empowerment Circle. San Diego Lyme Alliance is an affiliate of Bay Area Lyme.

Mimi MacLean:
Okay.

Patricia Cosulich:
So we have that community, but also I interviewed so many people, so I'm still in touch with a lot of the people that I interviewed. And I don't know if it quite counts as an established formal community. I have my own network that I've developed through this whole journey. I want to do more PR or things like that. And I have a lot of groups I worked with, like the Kroc School of Peace of Justice, where I did grad school and the Tory Project and some different competitions I was in. So, there are different groups to reach out to that I've been affiliated with in the past.

Mimi MacLean:
So once you do on May 6th, is that going to be your final presentation or are you going to redo it again, like in person when COVID... Or are you going to formally videotape it or make it into a movie? What's your long-term goal?

Patricia Cosulich:
So the long-term goal is really ambitious, and we are fundraising for Lyme non-profits. I didn't squeeze that in before. So, the goal is to help pay for treatment grants for people, and also help inspire different advocacy moves. But because of how the social or physical distancing has impacted us, I thought it's actually a unique opportunity by doing an online reading for people who are home bound or bedbound, to watch it in terms of accessibility. And it allows people from different parts of the country, and even other countries, to watch it, which I'm excited about, because my dream or vision is that there would be performances around the world in the month of May, in future years. And that that would be used as a community event and fundraiser, because part of the play is even comedic. Parts of it are really heavy and serious. And then parts of it are fun, which I feel makes it easier to invite your friends and family. Well, I think even for me, it's like less triggering, that it's not all depressing, and you can invite the people that you love.

Patricia Cosulich:
And I just feel like my friends and family and people who care about me, it's a lot easier for them to come to a play with me than to come to, say, a microbiology lecture. Because I've been to a lot of those for Lyme and they're great, but they're not accessible if you're not a scientist, and it's not always super tangible for the average lay person, and we need both. So this is like bringing entertainment and storytelling and community, and then you can walk away and have a conversation even about, "Oh, is that what you experienced?" But I just would love to see... It's actually inspired by the format of The Vagina Monologues, which I've learned Eve Ensler, the playwright, did something really cool where taboo name, and what they do though, is that every February they call it V-Day.

Patricia Cosulich:
And now at this point, it's this grassroots movement where around the world, there are people doing performances, and they actually raise money for survivors of domestic violence, sexual assault, which is really cool. And they've raised billions of dollars. And I don't know if mine will take off quite the way that hers has, but it would be cool to have like performances in different countries. And it has the framework that someone could actually insert a monologue from a local advocate to feature someone in their community.

Mimi MacLean:
Oh, that's great. So are these all monologues or do you have other people playing? When you said you're going to read them on May 6th, and you said you had two new leads, so do you have two people doing it with you or are you just reading the different people's perspectives?

Patricia Cosulich:
That's a great question. So it's a blend of documentary theater and fiction. So there are some pretty experimental or almost avant-garde parts. There's a personified pathogen, who is actually the villain slash comedic relief of the show. And as far as actors in the team, there will be a group of actors. I'm not in it. I was-

Mimi MacLean:
So you're not going to be reading it? So on May 6th, when we turn it on, it's not you reading it. It's people playing it out? Is it an actual play or is it just people with a microphone talking?

Patricia Cosulich:
It will be a reading just because we don't have the capacity to be in person, with all of the... That would be very expensive to try to do the regulations for an in-person, all actors in the same room. So, a lot of people in the theater world are doing these Zoom readings, where all the actors have their own individual cameras. And part of the new play development process, it's very common to do a reading, instead of a full stage performance with costumes and everything. It is part of that process, and I need to get better about communicating. That's what it's going to be.

Patricia Cosulich:
But I'm excited about the actors. We're currently recruiting a team with people who are comfortable disclosing invisible illness or chronic illness or disability status, just to have a team of people who really, really get it. I mean, a good actor can do it regardless of their personal background, but we just thought it would be cool to have that community component. And, I'm excited to see other actors do it, because I was in the previous readings, but I think it will be better for me to watch and not be in it. And I'll be participating in a talkback, so people can come to a talkback with me and the director and some other folks afterwards and ask questions and discuss what they saw. Part of the vision is that people could do readings.

Patricia Cosulich:
They don't have to necessarily do a full stage performance. And I want it to be something that can live in reading format too, just because I'm picturing with how fatigued we can be. If someone wanted to host an event, putting on a full production may not be realistic, right? So readings might be the way that this play continues to live on the majority of the time, just because it's a lot more-

Mimi MacLean:
Manageable.

Patricia Cosulich:
It takes less resources. It takes less resources and you can still have the experience.

Mimi MacLean:
Right. That's amazing. I'm so proud of you, and this has been great. I definitely will watch it on May 6th, and I assume it will be recorded, so that if people can't watch it, they can watch it again?

Patricia Cosulich:
It will be recorded. We're figuring out logistics of making it available. I have some plans, but they're not ready to be announced yet. [crosstalk 00:20:27]

Mimi MacLean:
Okay. So you'll definitely share with me the link once you have that, so I can post that with this, so people can be able to follow you. But I mean, right now, they can still follow you, either your website, right, or your Instagram handle. I'm sure you'll be announcing it there.

Patricia Cosulich:
Yes. So, people can connect with me on Instagram, @patricia.cosulich or @greatimitatorplay, and then my website, which will be www.patriciacosulich.com. Should I spell it? It's a hard name [crosstalk 00:20:58].

Mimi MacLean:
I'll have it on the link, so anybody's listening, it will be in the show notes. So it will be there. You can just click on it, but I'm excited because, I mean, there's obviously been other Lyme movies, like under our skin and whatnot. So this is definitely great because there's nothing else like it, right, that's been out there. So, I do think you're onto something and if you can create more of a community and have the opportunity for people to share their stories, I can definitely see that happening more.

Mimi MacLean:
One of my good friends, she keeps doing these shows and they're like stand up with a microphone, and it's like they have seven minutes to tell a story. It is national now. And it's almost like I could see this kind of turning into that. And there's national competitions that you win. They took the winner from New York. They took the winner from Chicago and she came out to L.A., because she was the winner from New York. And it became the national event where all the winners from all the big cities came, and she won that too. So she became the national winner.

Mimi MacLean:
Why am I drawing a blank? [inaudible 00:21:55] So they'll come up with a subject and then they have to... It's almost like an improv. They have time to talk about it, but it's like they have five or six minutes to do a monologue on the subject with no piece of paper. You can prepare a week before, but you can't bring a piece of paper with you. You have to just tell it. So it's kind of like in that vein. I don't know why I can't remember the name of the [inaudible 00:22:16] right now.

Patricia Cosulich:
That's so interesting.

Mimi MacLean:
So it kind of reminds me a little bit of what you're doing too, where you're... Kind of people getting up and telling their story. It could be sad. It could be funny, but it's in the vein of whatever they're talking about, and just about their personal journey. But this has been amazing, Patricia, and I wish you the best of luck on May 6th, which is like a month away. And that will be really exciting. And I hope next May, we'll be doing more of your play style that we could be sharing with everybody. Awesome. Well, best of luck to you and thank you so much for your time.

Patricia Cosulich:
Thank you. Thank you so much for meeting me.

Mimi MacLean:
Each week, I will bring you different voices from the wellness community, so that they can share how they help their clients heal. You will come away with tips and strategies to help you get your life back. Thank you so much for coming on, and I'm so happy you were here. Subscribe now and tune in next week. If you want to learn how I detox, and you want to check out my detox for Lyme checklist, go to lyme360.com/detoxchecklist. You can also join our community at Lyme 360 Warriors on Facebook and let's heal together. Thank you.