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.

EG: I assume you're speaking about the United States in particular, but do you know about Parkinson's information, statistics, or data from the international community and how other countries handle the same situation?

AC: Nobody has it wired, I can tell you that. I do know a little bit about international Parkinson's, because as a community during COVID that was one of the nice things. I now have friends all over the world who have Parkinson's, and I've met them on Zoom. I can tell you that in Africa, it sucks. You can't get any meds, so you are doomed. Even though we don't have a treatment for Parkinson's to slow the progression without symptomatic treatment, it's so much easier to die without those meds. It's just so much easier to die. So the life expectancy goes down in some countries. I've heard of communities where a number of people with Parkinson's will live together in the same apartment complex. There's one in Germany—an entire community of people with Parkinson's Disease living together and sharing their experience. It's so compelling to me.

EG: I see a trip to Germany in your future!

AC: I have a friend who's applied for it. She lives in Hamburg, so I'm kind of following her story, and if the world settles down for five minutes, I might go visit her. So, I think the thing we know from other countries, because the U.S. does terrible job of keeping central records—like we don't know how many people actually have Parkinson's in the United States. We don't even know, but in other countries that have socialized medicine, they do know. We do know that the incidence is growing tremendously. That's, of course, very disturbing. So the question is, are we just better at diagnosing it, or is it really happening more? These are all questions we don't know the answers to, but neurological diseases are absolutely the fastest growing. They're the fastest growing sector of disease in the world. We were calling it a pandemic before COVID, and now, of course, people understand what a pandemic is—but it is a slow-motion pandemic. It is amazing. The numbers are devastating.

EG: Let's talk a bit about the actual production of And She Danced. You tell your story through a variety of mediums. You start with your artwork, you have music, you have the movement, you have words, you have Shakespeare. The most powerful part of it for me is the work you're doing with Erica Lynn, the dance—the connection that you have. She represents your emotion in the play, and she's created at the moment when you have this sort of split in your psyche, from your logical self and your emotional self. We worked on that at the beginning when we started workshopping the project. I know why dance is important to you, but talk a little bit more about how dance is such a wonderful form of physical exercise and mental exercise for people with Parkinson's or people with neurological disorders in general.

AC: Well, one of the things I talk about in the show, and I probably don't talk about it enough in the show, to be honest, is that the brain is designed to learn movement specifically. I talk about how the brain is designed to learn and to adapt. And that is absolutely true, but the dopaminergic system, which is part of what's being destroyed in Parkinson's, is specifically designed to learn movement. People talk about dopamine as being the happy pill or the happy neurotransmitter or the reward transmitter or whatever you wanna call it. And it is, and it isn't. The thing is, if you do something that your body needs and likes, like having sex, you get a dopamine hit, right? And the dopamine hit is designed to record the movements that led up to that pleasurable moment. That thing that you're supposed to do, like eat or have sex or run from the saber tooth tiger, all of those things that keep you alive, dopamine is designed to flood your system at that moment and record the movement and learn the movements that led up to that thing. So if you have a dearth of dopamine, or if you're having trouble with dopamine—which is what Parkinson's is typically about, it's just, you know, trouble with dopamine—the best thing to do is to try to force that a little bit to exercise that circuitry. So since dopamine is so important with movement, movement helps exercise that circuitry, especially skilled movement, a movement where you're learning something. That is the key to hitting those neural pathways over and over and over again.

There's even more science behind it. If you exercise, you get a buildup of lactic acid in your muscles. It's the thing that makes you kind of sore and stiff. You try to stretch out to release the lactic acid from your muscles into your bloodstream, right? Guess what lactic acid does when it hits your bloodstream? It goes up to the brain, it crosses the blood-brain barrier and it builds astrocytes, which are nerves. It builds connections. That's what lactic acid does. If you inject lactic acid into rats, it'll build all kinds of astrocytes to nowhere. So the important point is—and a lot of this is very theoretical, what I'm talking about, but there's a lot of science and study behind it—if you're doing a skilled exercise, that lactic acid will go to build the neuroplasticity that you're looking for to reinforce movement and that circuitry. So to me, it was a no brainer. Now, of course, how do I know this? I happen to go to a doctor named Giselle Maria Petzinger, MD, who is a movement-disorder specialist, who is actually studying this exact thing. She and her husband, Michael Jakowec, MD, own a lab at USC, and they are studying this very thing, so I have a lot of access to this information. I've been in a lot of her studies, and I've participated a lot in their research, and I follow their research. I followed their research before I even came to LA. I knew I wanted her to be my doctor before I got here. She actually wrote the abstract that you read in the show. So all of this means that dance is very important. It just made more and more sense to me to do dance.

Erica Lynn Priolo

EG: Let's talk a bit about Erica Lynn Priolo for a moment.

AC: I'm a 54-year-old woman. I've never worn a tutu, and I'm not gonna fit in a classical dance class. In fact, my first dance experience with Parkinson's was a Zumba class, and I left in tears. It was horrible. It was really awful because everybody's doing these movements, and of course my body looks like a ratchet, and I'm like, you know, oh my God, it was a horrible experience. So getting me to come back to a dance class was like pulling teeth. Thank god that Erica Lynn and her David Bowie t-shirt were there to save me. Erica is a modern dancer, and her view of movement, if I can speak for her, is that it's just what the body wants to do. She'll give you a suggestion and ask, "What does it mean to you to dance as if you were sad?" She is not looking for a certain body type or a certain body position. She is looking for expression of emotion through movement, and that's probably true of many modern dancers. Erica Lynn is absolutely amazing, and she's just very joyful about moving. Every time she teaches class, she's like, "I love you guys." She's just full of love and compassion, and she's funky and she's hilarious. Why would you want not wanna spend time with her?

She's obviously leaps and bounds and a million times better of a dancer than I'll ever be, but I can watch her and know how I wanna move. I can now anticipate maybe where she's gonna go. So when we dance together, it just looks fluid—mostly that's cuz she's watching me and compensating, but it just feels nice when you dance with somebody who is paying attention to your body and making it work. There's some magic there, and that's the magic she brings to it. I would dare say that my life would be a lot less exciting and a lot less full without Erica.

EG: Yes, she's something else. It's not just her watching your movement, she's watching you. She's watching your essence. Her superpower is movement, so she senses it through your aura and how you're moving.

AC: During the early phase of COVID, we met once a week, every week, and spent an hour developing dance. Just the two of us on Zoom, and then I would put them into Premier Pro and lay them over each other and do these wacky things with them. It was hilarious and fun and beautiful (read all about it here). We just got to know each other so well, and we would say, "Okay, let's make a move, a dance that tells this part of the story." And that's another reason that she knows how to read me now, because she knows my emotions about this. So we talked about it a lot, so she put that into the choreography. And some of the choreography that she has done for this is just stunning. That whole movement in the first piece of Shakespeare piece—that's her, and it is gorgeous. So she is not only fun to dance with, but she knows that movements mean something in this world of Parkinson's. She's pulling from years of working with people with Parkinson's to choreograph this show. And that is amazing. Just amazing.

EG: When I look at you and your creative output, I recognize a fellow type-A personality with a big drive to create. When you look back on your life, when you were studying to be an engineer, did you ever have a desire to be an artist? Did you ever see yourself doing anything like what you're doing now?

AC: No, not really. Certainly creativity is part of my growing up. I once heard somebody say that life is like a jelly donut, and certain things just squirt out no matter what. So I did take, like, drawing classes in high school and an acting class or two when I was in middle school, but I quickly went backstage because I was much more of a carpenter than I was an actor. But, in my career, being a female engineer and a female construction manager—they just don't know what to do with us. What do you do with that? It's hard because your clients aren't expecting it, so you end up getting different opportunities than what a typical engineer might be doing. If someone figures out that any engineer is a good public speaker, you're pigeonholed right away into "Let's toss her in sales. Let's put her in this presentation." I only worked in sales for a couple years for the group that I worked for. Most of the time, I was in the field. But when I was in sales, I did a lot of training of people telling them how to talk about what they do. It's very hard for people to talk about. People love to talk about themselves, but when you're trying to get them to do a presentation about what they do, suddenly it becomes very difficult. So I spent a lot of time training people how to speak about things that they've done in their lives. So, that's kind of where a little bit of the acting came in—even though I'm not really acting in this show.

EG: I disagree! You're acting! The act of repeating the words and repeating the emotion—that's what acting technique trains you for.

AC: It is acting what I'm doing for sure, but at the same time, it is a little bit easier to access because a lot of it is drawing on my own personal experiences that are directly applicable. I think my favorite story about creativity and Parkinson's and my life is this one. So there's a theory about Parkinson's that the dopaminergic therapies, or the disease itself (nobody's really sure which) encourage creativity or turn on some sort of spigot in the brain. I would say that I feel like that's true. While I was always drawn to creative projects, after I was diagnosed, it became a bigger deal, and it becomes a bigger deal all the time. It's hard to decide if that's where the cart is, or where the horses are and all that. But, before I left my job, I was working in sales, and we were going after a terminal at the San Francisco airport. It was a big job. The team spent a year planning for that proposal presentation. The presentation document was thick, and the presentation was over an hour and a half, and I helped put that all together. One of the things that we put together is something called a "placemat." It's in front of the people you are presenting to and gives them a visual reference to follow along with the presentation. So, one Sunday afternoon, I'm on the couch and reading all this material about the project—all of this airplane information, and I fall asleep—which people with Parkinson's are want to do all the time. I'm asleep in the middle of my notes, and I dream of this placemat being able to be folded up as a paper airplane. I woke up and thought, we gotta do this. Looking back, even at the time, I thought it was really bizarre, because that type of thinking was so not my thing. It felt exaggerated, you know? I think, for one reason or another, that Parkinson's wants you to flex that creative muscle. You run into this idea over and over again. The brain gets creative itself, because it's trying to figure out how to interweave this new environment into your life. So maybe it wants to spike your creativity in general. There's a theory for you.

EG: I like it! I did a bit of a rabbit-hole dive on you and saw some of the videos on YouTube for the Davis Phinney Foundation. Your life is informative—your breadth of knowledge about the disease and the research, all these theories, and now this play—it feels like a logical progression of your ability and your desire to express this important information, but also a creative way of living your life through the diagnosis and the life that you have and will have going forward. So, what happens with And She Danced going forward? Where do you see it five years from now or even a year from now?

AC: I don't know what the possibilities are. The whole art world is kind of new to me, so I'm not sure where this goes next. My goal for this project is to reach more people, both in the Parkinson's community and outside of it. I want to impact people who are in the position to make decisions that can help our lives. If I had my magic wand ready, I would love to see this performance done for the AAN —the American Association of Neurologists. I would like to see this performance done for whatever coalition of insurance companies there are out there. I would love to see this done for Congress—political people who don't understand what people are going through. And, most of all, I would like other people with Parkinson's to see it. The feedback that I'm getting from the community is, "Thank you for sharing your story, because I see myself there, and now I don't feel as alone." If I can just even accomplish that, if I can make one or two people feel less alone, then that's a life worth living.

EG: One last question. If there's one thought you could leave with our readers about people who have been diagnosed with Parkinson's, what would it be?

AC: Look past that bland, uninhabited, vacant expression and find the people underneath the Parkinson's, because they're worth knowing.

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Elizabeth Gracen is the owner of Flapper Press & Flapper Films.