Spooning with Spoonies: Ep.14 Writing and Portraying Chronically Ill Love Stories in Theatre | Ali Hardy
9:38PM Apr 23, +0000
Speakers:
Noa
Ali
Keywords:
chronic illness
relationships
stories
chronically
play
people
create
sick
ali
spooning
space
actor
inclusive
theater
arts
character
partner
theatrics
liability
intimacy
[Positive Pop music in the background]. Welcome to another episode of Spooning with Spoonies. I'm your host and fellow spoony Noa Porten and I'm just a girl trying to figure out how to date with chronic illness. I started this podcast to ask other single and coupled up spoonies as well as relationship experts about their journeys and feelings navigating, dating and relationships with chronic illness and disability. So come on this journey with me as we explore the essence of life, relationships. Seeking connection is as human as it gets. And we all deserve to feel human.
What is up y'all! Today I chat with Ali, who is the co founder of Reckless Theatrics, which is a theatre collective made up of chronically ill artists with a mission of inclusion, intersectionality and using art for social justice. How cool is that? Ali who is an artist, chronic illness and rare disease advocate, actor, certified intimacy director in training and playwright, actually wrote a play with Reckless Theatrics about relationships with chronic illness, which she'll also be performing in virtually in the upcoming month. So in this episode, we chat about what drove Ali to create an inclusive theatre space, the inspiration behind the complex love story in her play, and what chronic illness storylines we'd like to see more of in theater and the media.
I couldn't think of a better topic or episode to wrap up season one with! What a journey this season and launch of this podcast has been. I am feeling emotional recording this intro. If you're listening right now, I just want to tell you how grateful I am for you. Thank you so much for your support. And moreover, thank you for coming on this journey with me for learning, laughing, growing and having the messy conversations together. Okay, before I get too mushy, get comfy, and let's get Spooning!
We met like, what, like a year ago now or more...
I think so I think it was around the beginning of the pandemic. [positive pop music fades out.]
I remember we met through the Health Advocacy Summit. And I heard that you had this theater collective. And I was really excited by it. Because at the time, like I used to kind of do like theater, musical theater, dance like I was into the arts. And then I kind of I stopped like dancing and stuff when I got sick. And I really missed it for a long time. And I didn't know that like spaces like this existed. And so it was kind of the beginning for me. And now like, you know, I found a ton of like really inclusive, like dance spaces and art spaces. And but I feel like they've been popping up this past year. But so I'm really excited to like chat about that. And to hear more. Because I'm feel like, it's so important. And especially when it comes to relationships like to have accurate, authentic storytelling in the arts in the media, when it comes to chronic illness.
Yeah, same we like when we set out to create this company, there weren't a lot of like, inclusive spaces, or there were they just weren't like well known. And so it's been an absolute whirlwind, trying to, like create the space and sort of figure out what it means to have an inclusive space. And like create art that is inclusive, and like not only it tells, like inclusive stories, but also is inclusive on like the business end and the actor end and like the producer end and stuff as well.
Right. Yeah, um, what was the motivation for you and the co founder for creating Reckless Theatrics?
So we started creating this company, I'd say, January 2019, we had a call, and we were like, We got to do this. And it took about a year of talking and figuring things out. And like having those hard conversations about what the company would look like and what we wanted, like our mission and stuff to be, and it kept coming back to an inclusive space. And we sort of came up with this two sided mission of we wanted to be inclusive of like, everyone's identities and who they are like as a person because everybody holds both like privileged and oppressed identities. And like both of these are what makes you who you are, and it's who you are, that should be celebrated. And we want didn't want a space that was only focusing on like one identity, or something like that. We were like, No, we need a space that is inclusive of all of that and all the different experiences. And then we also, like when we were in school because we went to acting school together, the more that we got into like writing, or directing or even other things like painting, and dancing and singing and stuff like that, we would get this pushback of "Oh, so you're not a serious actor". And it's like, no, having more than one artistic interest like, helps,
Right.
Regardless of what you're doing. And so we wanted a place that was fully inclusive of like, everybody's artistic interests as well.
Yeah, was there like a personal experience that either of you had that was like, in kind of the theater space, it was like, we need to create something that is better, you know.
So for me, I got sick when I was in high school. And I was like doing High School theater. And I auditioned for my dream role, which was like, it was just a high school production, but I just wanted to play the character. And I ended up having a hemiplegic migraine during the audition and collapsed on stage. And I was told that I couldn't do theater anymore, because it was too much of a liability. And at the time, I was undiagnosed. And I was like, dead set on like, I want to be an actor, I love acting, this is what I want to do. And the entire time that I was trying to get a diagnosis, because at the time, I was very much like housebound and bedridden, and we didn't know what was happening. And acting very much seemed like the thing that was not going to happen. And I, like every avenue that I sort of looked at was like, no, sorry, you too much of a liability, even starting to get into school and stuff like that. I couldn't find a place that was like, willing to accommodate because there was that aspect of like, oh, her health is very severe. And it looks like she's having a stroke. And are we going to be held responsible? And looking at like, professional settings as well, it was this constant like, oh, Ali is a liability. I don't know if this is gonna work. Like, can we really accommodate this? This is like, different from other things. And so a lot of that came in to like, Okay, what options do I have, and I was always told, like, the only way that you're ever going to have a career is if you create your own work.
Yeah.
And so I think I started writing my first play back in like, 2014. And then, over the years, I just started writing more and more and more, because that realization of like, I can spend all my time fighting with people to lead,
Right.
Like, get them to let me work, or I can just create my own work. And at this point with, like, social media and YouTube and like content creation, everyone's expected to create their own work,
Right.
And so I started doing that. And then like, my friends started working with me, and like, my co founder, Sam and I have been creating projects together literally, since the first year that we met. And now we have like a company that we create projects under and that's sort of like, what led to this adventure.
Yeah, I feel like that's such a common like, story in in the chronic illness and disability community, like kind of being excluded from spaces. So like, having to create your own, you know?
yeah.
Um, so you talked about writing your own plays. And that's why, you know, we're here today, because you sent me the play that you guys are have been working on and are going to be performing really soon. And it is both of two of them and both of them relate to relationships in some way and chronic illness. And so can you tell, share a little about the upcoming play and what was the inspiration and like thought process behind it?
So yeah, we are producing a double feature. We have Grace and Dennis, which deals with more like platonic relationships, and both very much deal with access, intimacy, and Grace and Dennis is like this young 20 something, girl goes to a support group for people with chronic illness and chronic pain and realizes that she is the youngest person there by more than 30 years. And so she meets Dennis and at first they're like, okay, we're not gonna get along at all. And there's a lot of judgment.
That's like when you go to the cardiologist and you're like, the youngest person there. And you're like socializing with all the Bitties like.
Yup, very much where the inspiration for that came from.
But like, they end up getting along really well. And they find out that they have a lot more in common than they thought they would. And then the second play Fail Risk follows like, originally, that's part of a much larger script, that's actually the first full length play that I've tried tackling. But for this, we've taken a single scene and we've turned that into like a short play of its own. And so in this one, we are following Peyton and Alex sort of trying to, like reintroduce intimacy into the relationship, after Peyton has a mini stroke during sex. And we're sort of tackling that like what happens when you have sexual trauma that is caused by your illness or your disability, rather than an assault, because I don't see that talked about anywhere, but also a lot of the feelings that come up when one partner is sick. And when a lot of the like blame and guilt that comes up or you know, feelings of like sacrificing, but also like, the love that is there and the care that is there for the person and like what it means to be caregiver, sometimes when you originally didn't ask to be, and like how the feelings that come up with that. And, you know, the feelings of wanting to like, treat this person, the way that you've always treated them before they were sick. But knowing that, like there's, there's a lot of different, like aspects to the relationship. And like, you have to be really careful in some ways that you weren't necessarily careful with before that you wouldn't have to think about with a partner who is not chronically ill.
Yeah, and I read through the play, and I was not going to give away too much. But I was really impressed by kind of even just in the short scene, the complexity of each character. Because I think oftentimes when we tell stories of chronic illness, it's kind of it's like, slotted into these, like stereotypes, but it's like, we're human, just like everybody else. We experienced the joys, the challenges, the complexity of like, human emotions, and it's not like black and white, you know, and on both characters and like that, like you see them kind of like grappling and like fumbling and figuring out how to adapt. And like you said, because there is so much love. And it's not like this, like, oh, like you're a burden goodbye type storyline, you know?
Yeah, there's definitely...one thing that keeps coming up in rehearsal that shocks me every time is, you know, Peyton, the character that I'm playing, there's definitely moments where she has that realization of he is sacrificing a lot for me. And there is no way he doesn't feel like I might be a little bit of a burden, even if he's not seeing it. And like the vulnerability in that is extreme, when like, you know that somebody is just kind of hitting the end of their rope, but you don't know how to help or fix that. Because like, you need their help. It's, it's been very complex and very interesting to sort of explore those. And it's also been very interesting, because there's moments where I absolutely can't stand either character. And those moments when I love both characters so much,
Right. Yeah. Yeah. What, what was the inspiration for you as the playwright behind writing this?
So originally, my, when I first started writing the play about four years ago, I came up with a list of things that like people had said to me, like really awful things that people had said to me about being sick. And I showed it to a bunch of my friends. And I was like, who would this hurt from the most? And almost all of them said, my partner.
A couple, like myself included, were like, no, my parents like this would hurt the most for my parents. But most people said their partner and I was like, cool, then I'm gonna write a play where this stuff happens. And that comes up just sort of show like, what it can really be like, in like relationships with people where they've sort of hit like the end of their rope. And at first it came from like, a very negative place.
Right.
And I when I was doing a lot of research for it, I was looking up like, Well, what does it mean to love somebody unconditionally and stuff like that. And one of the examples that I found was like, if this was back in like the very, very beginning of like, the AIDS epidemic and your partner gave you AIDS and you could forgive them for that. Knowing that you are going to die, and then you love that person unconditionally. And so I was thinking in terms of other things like, well, what if they gave you like a deadly virus? What if something like this happened? And you were in the middle of like having sex and you had a stroke? What if, what if you're like, when I got sick, I got mono. And the mono triggered an autoimmune disease. And I was thinking, like, if I knew who gave me mana, like, would I be able to forgive that person? And I was sort of like, No, I don't think I could. And then I was like, Well, what if, like, what if somebody could, like, and so I started exploring that. And then over time, it's very much grown from this, like, no things are not going to work out like this is going to be really sad and dark, too, sometimes things don't work out. And this is why or sometimes they do work out. But this is how close it gets to not going right. And sort of showing the like, behind the scenes of like those real time conversations of when people are sort of at their breaking point, but still trying to like be there for each other.
Yeah. And I like that there actually is like a resolution in the end. And it does end up being positive, because I think we're bombarded by these like negative messages by the media all the time. And we don't see these positive love stories that do exist. And that, like the beauty and the intimacy of caregiving relationships, which like, I've discovered through this podcast and talked to so many people about and like the beauty that comes when you have to kind of figure things out and adapt and communicate in a way that other couples aren't forced to. And it's, maybe there's like, a difficult adjustment period. But like, kind of, in the end, something really beautiful comes out of it so many times. I mean, it's a constant like working on it, but so is every relationship. So I think I appreciated that part of it, too.
And that's what's also been really interesting, because during the rehearsal process, and the audition process, we found two actors had that had very different takes on the play. One was very like, in that situation, they their audition made me feel how I would want to feel, and the other one rang a little more true to reality. And so we ended up casting both. And so we have like these two versions going out. And they each have different endings, and one does end positive, but the other one doesn't. And so it's going to be interesting to hear feedback on how those go as well.
Interesting. Um...kind of on the topic of like, stories that need to be told. And I've kind of shared that the kind of stories that I would like to see be told more, what are storylines that you would like to see more in theater and in the media, when it comes to chronic illness?
I'd just love to see, sort of stories be told in general, I feel like they're honestly left out.
Right.
Like I somehow have been primarily cast in roles of chronically ill women. And a lot of them just so happened to be like sick and dying in a hospital with
Right. Yep. Yeah, that's something that's like, I I'm...that is obviously like, that's somebody's story. I mean, it's so many of our stories, but it's not the only thing that we are and I think that it's there's this frustration that that's the only thing that's like portrayed at least I can't speak for anybody else chronically ill, but like, I'm frustrated by that. And especially when it comes to like, love stories like the like, sad like she's dying, or she's chronically ill like, I literally saw Netflix a preview the other day. And I was so annoyed because it was like, this girl falls in love with this guy there. It's like a teenybopper movie and like she like and then she's like hiding that she has like Muscular Dystrophy or like some chronic illness. And then she's like, doesn't want to tell him cuz she's afraid he won't love her. And then she tells him and he's like, crying to his mom. Like, why is my life she's like, and then she's like, Well, obviously we can't be together now because I'm sick and he's like, No, I want to be with you. And then he's like, portrayed as this like, hero but why? Like, I can we have like, a bad*** like, chronically Oh girl who's like, yeah, I'm hot as sh**. Like, you'd be lucky to be with me.
Yeah, you always hear people say that they want to see the stories where like someone just so happens to be sick.
Exactly.
And stuff like that. Yeah. And showing sort of like what a day in the life of someone like that looks like like I remember mentioning once like, I know a lot of people talk about how they want to see like the nursing like the wheelchair or like a lawyer with a prosthetic and I was like, cool. I also want to see someone with like a picc line.
Yes!
Or like a port, or like a feeding tube or something like that, like, let's normalize, let's normalize it like
All of it
Lets start showing this because there are people who really do have that stuff and are out running businesses and being parents and everything else. And I want to see those like, brought into the arts, but also like, I love watching very complex shows, and very, like just hearing complex stories. And I love I want to see, this is one very specific, but I would love to see sort of like the relationship between a chronically ill adult child and a parent, and sort of like the differences that come in to like your child as an adult, but they still are very much relying on you. Yeah. And like, how do they navigate that independence? And that caregiving and stuff like that, that I think would be extremely interesting.
Yeah. I think that would be interesting, too. And I think, I think caregiving relationships, whichever it is, between a parent or partner I think are interesting. And I think that it's definitely hard to navigate but important to show that like, just because you need help with certain things doesn't mean you're any less of an adult or any less independent. So yeah.
Well, this has been really, really awesome getting to chat about this. I love this like topic, and I love the arts and everything you guys are doing. It's so so important. Can you tell everybody when and where they can watch the upcoming plays?
We are going to be releasing a eventbrite very, very soon. We are aiming for the last two weekends in May. Time is coming very soon. We're finalizing that this weekend with the person was providing us the zoom account. But you can check everything out at our website recklesstheatrics.com or on social media, @recklessthtr, all the updates will be there.
Yay. Awesome. I personally will be there and I cannot wait. And thank you so much for for sharing your work and some of your story and your artistry with us.
Yeah, Thank you for having me.
Thanks for spooning with us. [positive pop music]
Thank you so much for listening. If you enjoyed this episode, share it with a spoonie who might be interested in Ali's story and Reckless Theatrics' work. And if you want to stay up to date on what the podcast is up to next, come join the community on Instagram @spooningwithspooniespod. Thanks again for an amazing first season. [music fades out]