Raising Lyme awareness can sometimes be challenging when the process of talking about one’s journey is exhausting – that is where Patricia Cosulich decided to step in and create The Great Intimidator – a documentary theatre-based platform for Lyme warriors to express their stories, build community and ultimately raise awareness to a broader audience.
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Mimi: Patricia, thank you so much for coming on today. I would love to start with you just telling you about your Lyme journey. I’m super excited to hear about your Lyme journey and also about what you’re doing now to bring awareness to Lyme. So, welcome and thank you for coming.,
Patricia: 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 a 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 many activities and classes. But by 11th grade, it was obvious that it was extremely not normal because I struggled so much with fatigue, that sort of fatigue that you feel like your legs are lead blocks, and it’s hard to walk.
I was extremely active. 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 – it was just a 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: I’m sorry.
Patricia: Thank you. And so that was another reason to write me off as stress.
Mimi: Yeah, exactly.
Patricia: 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. 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: So what would you say is the pivotal thing that got you on the track of feeling better? Because there are 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: 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 don’t want to have anything ever taken out of context as medical advice-
Mimi: No, but what you personally did. Because you went to a Lyme literate doctor, does that typically mean a little bit heavier on the antibiotics?
Patricia: 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 usually take 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, and many things for immune support. So it wasn’t just-
Mimi: And did you change your diet and do all that?
Patricia: 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: No. I can only assume it’s like an anti-histamine or something to that effect, where it’s super… Any vegetable or anything that kind of crosses, I’d assume. But-
Patricia: 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 a leaky gut. So I had a ton of food sensitivities to almost everything.
Mimi: 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 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: Thank you for asking. So, it’s been quite a journey to do that. I grew up in the 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 realized how much more capacity I had. I felt like I had more and more of my personality back and energy and could do more.
I started to feel really grateful and then started to look around and see. I had no idea that there was this world of people. 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. I started to feel really angry about how much privilege it took for me to get to where I was. So that’s how I decided to start advocating. It was definitely a shift to become so public about it because I 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.
Mimi: I would say the first time I had Lyme and felt better, I was like, ” 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. Then I relapsed, so the second time, which took me a lot longer to get out of, I decided to start embracing it.
Do you know what I mean? I love reading, learning, and trying new things. But it’s funny that you mentioned that because, for years, I was like, “I should make videos.” My point is, I knew that I wanted to do a video about me having Lyme, and I couldn’t do it. I couldn’t do it. It took me until 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; 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. 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.
Mimi: Yeah. And so, where does your activism come in with the play? How are you using the play as your tool?
Patricia: So, this field called applied theater is the intersection of advocacy and theater. So, actually, performing became difficult because of the symptoms I had, which is how I became interested in playwriting. And I had always had an interest in different forms of advocacy before 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 even to take up advocacy for something personal. And it was a natural fit with my background to blend advocacy and theater.
Mimi: So you wrote a play about Lyme; the Lyme Monologues is what it was originally called. Right?
Patricia: It was called In the Lyme Light Monologues originally.
Mimi: 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: There will be an online Zoom reading this May 2021. I’m really excited about that. So, people can watch it from anywhere in the world, which will be super fun. Because there’ve been readings in the past of the script’s working drafts, they were in person. There was a set number of people who could come. I’m excited to share with people from different places. It’s also a new draft that no one has seen publicly before. It’s changed quite a bit. The goal is to use it for several issues that impact the Lyme community, awareness and storytelling, and building community.
I started receiving a lot more support, which wasn’t even my intention. I intended 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. Especially when you have brain fog, I feel like I can’t explain it.
Mimi: Yeah. I 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: I shouldn’t laugh terribly cause but it’s so true.
Mimi: It’s true. How are you going to get the name out? How are people going to find out about it?
Patricia: I’m in the process of building a website. So, hopefully, by the time this is published hopefully, the website will be live. 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: When you say community, is it your own community, or where are you meeting these people, hooking into what groups?
Patricia: I co-facilitate the San Diego Lyme Alliance Empowerment Circle. San Diego Lyme Alliance is an affiliate of Bay Area Lyme. So we have that community, but I interviewed so many people, so I’m still in touch with many 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: So once you do on May 6th, will that be your final presentation, or are you going to redo it again, like in person when COVID… Or are you going to videotape it or make it into a movie formally? What’s your long-term goal?
Patricia: The long-term goal is really ambitious; we are fundraising for Lyme non-profits. The goal is to help pay for treatment grants for people and also help inspire different advocacy moves. I thought it’s actually a unique opportunity to do an online reading for homebound or bedbound people to watch it in terms of accessibility. 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 May, in future years.
I 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 many of those for Lyme, and they’re great, they’re not accessible if you’re not a scientist, and it’s not always super tangible for the average layperson, and we need both. This brings entertainment, storytelling, community, and then you can walk away and have a conversation.
At this point, it’s this grassroots movement where there are people doing performances around the world, 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: 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: 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 which 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.
Mimi: 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: It will be reading just because we don’t have the capacity to be in person. That would be very expensive to try to make the regulations for an in-person. Many 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 widespread 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 at communicating. That’s what it’s going to be.
Part of the vision is that people could do readings. We’re currently recruiting a team comfortable disclosing invisible illness or chronic illness or disability status to have a team of people who get it. A good actor can do it regardless of their personal background, but we just thought it would be cool to have that community component. 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 talk back with me and the director and some other folks afterward and ask questions and discuss what they saw.
They don’t have to do full stage performances necessarily. And I want it to be something that can live in reading format, too, just because I’m picturing 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-
Patricia: It takes fewer resources. It takes fewer resources, and you can still have the experience.
Mimi: 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: It will be recorded. We’re figuring out the logistics of making it available. I have some plans, but they’re not ready to be announced yet.
Mimi: Okay. So you’ll definitely share the link with me once you have that, so I can post that with this so that people can 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.
Mimi: I’m excited because there’s nothing else like it. One of my good friends 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. 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 see this happening more.,
Why am I drawing a blank? They’ll come up with a subject, and then they have to… It’s almost like improv. You can prepare a week before, but you can’t bring a piece of paper with you. You have to tell it. So it’s kind of like in that vein. I don’t know why I can’t remember the name of the show right now.
Patricia: That’s so interesting.
Mimi: 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.
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