AND SHE DANCED: An Interview with Amy Carlson

By Elizabeth Gracen:

I sound like a broken record when I talk about my gratitude to the Muses for allowing me to cross paths with the Lineage Performing Arts Center and all the talented, big-hearted creators who walk though that artful portal to create and participate in original programming across a variety of mediums. I'm also grateful that I had the chance to produce a documentary film, Dance For Joy, about LPAC's outstanding work with the Parkinson's community. The experience allowed me to meet new friends and continue to be challenged and called upon to intermingle my creative juices with the important work being done to serve those with neurological disorders.

When the firecracker powerhouse known as Amy Carlson sent me a script and asked me if I would play a neurologist in her new play, And She Danced, I didn't hesitate. The work had an immediacy and energy that resonated with open, honest truth. I knew it would be yet another life-changing experience that just sort of happens at LPAC.

Amy was diagnosed with Parkinson's Disease in her early 40s, and over the past ten years, she has become a dynamic advocate for those with Parkinson's. A former engineer who has gradually shifted her goals and adjusted to the many changes that occur with the disease, Amy has not shied away from digging deep into the experience. She has become an artist, a creator, and educator and ally. Her new play takes the viewer into the harsh realities of a life with Parkinson's and the challenging emotional terrain of the disease. I've never seen anything quite like it, and I'm so honored that she asked me to be a part of the process.

At this writing, we have one more performance of this run of the play, so I wanted to reach out to Amy and talk to her about the work, her motives, and the mysteries of Parkinson's Disease.

Amy Carlson

EG: Amy, you've written articles for Flapper Press over the years, but I'd love for you to tell our readers a little bit about yourself and your journey to creating And She Danced.

AC: So in the beginning of life, I was destined to be an engineer and spent a lot of time studying math and sciences. I was involved in the arts as a child, but it was never something that you could do for a living, at least in my upbringing. So, I was an engineer for many years and a program manager, for the most part, of large projects up until the time I was about 48. Then, things started to go the wrong way with my Parkinson's, and eventually I had to leave that career because it was way too challenging for somebody with Parkinson's. I would say almost any career is at that point, because there's just so much that has to be managed. So, I left that, and it left a pretty whole big hole of life. You can't go from working 60 hours a week to zero and have it all balance out. So, I filled the gap with a lot of rehabilitative type of work—exercise and that sort of thing. I found myself continually gravitating toward dance. I would go to dance class and enjoy myself. I felt like, well, this is the way to go, you know, find something you love and do that. Don't, don't, don't think about it as a workout, because that immediately says dreary, you know?

EG: Is that when you met Erica Lynn Priolo?

AC: Yes. I just thought she was really super, so I followed her around like a groupie. Eventually, I hired her as kind of my personal dance coach, which she's been for many years now. The more I got into dance, the more I just felt like this was something that was just perfect for me and my situation with Parkinson's. In the meantime, because you don't just give up organizing everything in everybody else's life, like on a dime (I had left program management, and I needed to manage something), I contacted the Lineage Performing Arts Center and asked if I could start building some neurological programming there. Brian Elerding and Hillary Thomas said yes, because that's what they do. So we started an acting class, and I totally conned Brian into teaching an acting class. Then we started a music class, of which we've had a various teachers, but we have finally landed on Shauna Toh—who is perfect for it. So I kind of created like my own therapy program, and I just invited other people to participate, and that worked out pretty well.

EG: Until COVID hit.

AC: Then it all went to pieces. We did it on Zoom, and it was about as successful as anybody else's attempt to go to Zoom. Right before COVID, I was doing a number of talks through the Moth, in competition here in LA, and a friend of mine, Will Bellaimey, was coaching me for that. He kept telling me, "You've gotta write your story." So I did, and Erica and I kept dancing and creating these dances in COVID-land, using film and Zoom and having a lot of fun with it. Eventually, we had this repertoire, and we decided that we needed to do something with it . . . and we did: And She Danced. The production is a combination of the narratives that Will and I talked about and the dances that Erica Lynn and I worked on. You can feel Brian's Shakespeare content in there as well. So many Lineage people and people that I know from that world show up in the piece.

EG: Like José Mendoza . . . who you talk a lot about in the play.

AC: José does play a large part of the story. He was a fellow Dance For Joy guy. His death during COVID was really sad. He did not die of COVID, but he did fall and hit his head. COVID was just destructive, horrible for the Parkinson's community because isolation is really bad for people with Parkinson's. And also, most of our treatments are considered non-emergency, so people had surgeries put off—like deep-brain stimulation, surgery visits to the clinic . . . everything was curtailed. Because Parkinson's is never an emergency, it's just a slow roll, without proper tending, you can go downhill pretty quickly. Some of the folks with advanced Parkinson's just—well, I think, part of it's a combination of giving up. It's not having access. We lost a lot of people during that time. They just didn't have access to what they needed. So, this play sort of recognizes that.

EG: That's so interesting. I mean, I'm actually in the play, and I didn't realize that that was how it came about. I just thought it was something that had taken the 10 years since your diagnosis to write about. That you had written these scenes, these moments in time, and had assimilated them into a narrative that became a show.

AC: Well, that is partly correct. I mean, all along, from the beginning of my diagnosis, I have logged or written pieces about my experience. I mean, there's so much that got put in and then thrown out. There's entire pieces that Erica Lynn and I did that we realized didn't fit. In the end, it was a sort of crushed up amalgam of stuff. So, it is what it is now. It's been years in the making for sure, but the actual thrust of And She Danced is more like two years old.

EG: The pandemic sort of forced you into a different creative head space.

AC: Exactly. I had to do something, because I was forced to spend a lot time by myself.

EG: Well, I'm in the wings for a lot of the play. I come in and out, so I get to sit there and listen. Through our rehearsal process and through performing it, every time I hear it, I pick up something new that I didn't notice before. However, every time I see it, I'm just knocked back by the totality of what you've created. It's really wonderful and moving, and I already know a lot about Parkinson's, but I see the potential impact it can have on an audience who might not know that much about the disease itself. The play is educational, but it's entertaining, and it's an emotional. I just commend you on it. It's a wonderful experience. You probably can't even step back from it in this form yet because it's too close and we still have one more performance to go for this run of it. But if you could step back from it, other than the assimilation of all these disparate parts, what does the final piece represent for you? What do you want people to come away from seeing it?

AC: Well, first of all, thank you! It's a good question. I've been asked that many times by Brian Elerding—and I think I change my answer every time, but I definitely want to educate the public. There are so many people walking around who don't realize the impact of this disease and so many people, even those who have the disease, who don't really understand it. That's something that really concerns me. I constantly have people coming away from meetings with me or this show who say, "I had no idea that what I was experiencing was actually part of the Parkinson's." I think another part of it is just trying to help the world see that there are people out there experiencing (and people don't have to have Parkinson's) pretty large things that interrupt their lives where they don't fit into society the same way anymore. That's difficult. [I want] the person who's never experienced something like that to understand how difficult it is [and for the person who has] to feel like they're understood or that somebody else has experienced something similar—that they're not the only one. I think it is a powerful thing because one of the beautiful and horrible things about Parkinson's is that you live with it for a long time. Decades of watching the world in a much different space in a way that you never did before. You have to find a way to live with that. I think there are people out there with mental illness or other diseases or long-running chronic disorders who feel the same way. They feel like, "I'm alone here in my corner, and nobody sees the world the way that I see it." I think it's time for some of those people to come out of the corner, because there's a lot of them out there. They need to say, "Hey, we're here, we're here, we're here."

EG: If we learned anything during COVID, it's that even though we have a love/hate relationship with Zoom, it is a way of reaching out to make contact with people.

AC: From a handicap standpoint, I think some of this has been really interesting. When I was leaving the workforce, and even when I was in the workforce, I continually asked to be allowed to work from home so that I could lessen the impact of the commute and that sort of thing. I was told, "We can't do our jobs that way. We have to be face to face." Now, here we are 10 years later, and we're not face to face, and it's working out just fine. So, I have a lot of problems with what we can't do for people who are disabled. People think, "It's such a hassle to work with those disabled people." I mean, I am a hassle to work with. It's difficult, yet if we take half of our society and say, "You're too difficult to work with, but now I have to support you." I mean, that's not workable either. So we're in this terrible crush in the middle where we don't know what to do with handicapped people at all. We don't know how to assimilate them into society, nor do we know how to support them. Somehow this has to break, it has to change.