Charli’s Story
Charli (excerpt from Stryker, 2024)
I love singing. It's very freeing. You have to be completely present to sing, which I think is nice, almost meditative.
Charli is a professional musical theatre performer. They’ve been singing since seventh grade, although they think they “sang Britney Spears songs to [their] stuffed animals younger than that.” They got into musical theatre classes and did choir and drama throughout high school. Upon graduating, they went to college to study musical theatre and dance, and have “been working professionally as an actor, a singer, and a dancer since.”
About a month into college, playing in the marching band, they noticed that every time they tried to play a high note, they felt faint. They went to university health services and were given a pregnancy test and told “we think you’re just dehydrated.” A couple of months later, they passed out at the gym and went to the emergency room. From there, they got a referral to a cardiologist.
I got sent to a regular cardiologist and they didn’t find anything, and then they sent me to a specialist, and they said that there was nothing wrong with my heart, that it’s neurological.
Later that year, in a rehearsal for the musical, they fainted again. “I was standing on top of a table because [of the blocking], so that was kind of scary.” They did an electroencephalogram (EEG) and diagnosed epilepsy, but a nurse suggested that they get a second opinion because of things that she had heard about misdiagnoses from that doctor. The second opinion was that they did not have epilepsy, which made sense to Charli because they had terrible side effects from the epilepsy drugs. The epileptologist who gave the second opinion told them that they reminded him of a patient that he had with POTS and sent them to a specialist.
That POTS specialist was like, “no, we think you have epilepsy and I think you’re depressed.” And I was like, “after reading about this POTS thing, I don’t know, it sounds pretty spot on to everything that I’m experiencing.”
After a borderline tilt table test, they went to a different POTS specialist to do another test, this time with a doppler. Using the doppler, the doctors were able to see a lack of blood flow upon standing. Charli also noted that the diagnostic criteria for POTS had changed from “over 120 beats per minute” to “over 120 bpm or 30 bpm over what the patient’s normal resting heart rate is.” Because they were a triathlete at the time, the new criteria confirmed the diagnosis.
Charli’s diagnostic journey and symptoms were especially difficult to navigate while trying to maintain pursuit of a performance degree. Professors appeared to lose interest and Charli was no longer being cast in shows. By the end of their first year of college, symptoms had gotten so bad that they were housebound.
I couldn’t go anywhere; I couldn’t walk very far without feeling like I was going to faint. I was experiencing a lot of weakness. I was literally in bed every day, watching Netflix. And if I’m lucky, on a good day, being able to walk to the end of the street and back to get some sort of exercise in. By the grace of God, I was able to graduate on time. And I think that really was only able to happen because my dad dragged me to the grocery store.
Charli described their resistance to their dad’s exclamation, “We gotta get you out of the house! We’re going to the grocery.” They were about halfway through the grocery trip when Charli decided they couldn’t walk anymore because they were going to faint, so they decided they would use one of the scooters from the front of the store.
And that was the only way I was able to complete the trip. The next time that we did that, I just grabbed it from the beginning. I was like, ‘Oh, I just successfully went to the grocery store!’ Which doesn’t sound like a lot, but at the time it’s all I had. So, I think that was the moment where I kind of started seeing that a mobility aid could help me just be able to get out of the house and have a life again.
We discussed their use of the wheelchair further and the sensitivity of the subject.
When someone gets into a car accident or something and they have to use the wheelchair, it's not a choice. And I think that when you have to use it for a chronic illness, people see it more as a choice. I think people see it as giving up on trying to get better, and it's just really discouraging because, you know, I didn't have a life. I was house ridden and I started using a wheelchair and actually had some freedom again. And that's what allowed me to be able to get a house and finish my degree and perform again. And it was a really long journey to figuring out how to do life seated, and performing especially, seated. But it's the best thing that ever happened to me and I don't really know where I'd be without it. So many people saw my wheelchair and that pivot to using a mobility aid as giving up and not wanting to get better, and not wanting to be cured and whatever. But to me that was so the opposite of giving up. This is the only fighting chance I have to do the one thing that sets my soul on fire. I think people see a mobility aid or disability as this limitation, but my mobility aid is my freedom, and my disability is the biggest source of creativity that’s ever come to me in my entire life.
After a move, Charli had transferred care to another POTS specialist, noting that “[My first doctor] helped me get off the ground, and I would say [my second doctor] helped me get my life back.” Finding success while using a borrowed chair from a friend’s father, they began the discussion of using a wheelchair with their doctor. “I think after him seeing, ‘Oh, this person is getting out, getting back to their degree, being active again,’” they were given the prescription for a chair that fits. They pointed out that deconditioning can make POTS worse, and while they are sitting, they are still incredibly active in a way that they can’t be without the chair. Charli has found that their symptoms are easier to manage with the use of the wheelchair and their service dog, who can predict when they are about to faint so they can “get ahead of it.”
When they were first diagnosed, singing was difficult, finding breath support and access to the upper register especially hard. And even still, higher, or long, sustained notes can make them faint and dizzy.
Even in my mix or belt range, sometimes with long extended notes I would say, I just feel this like pressure in my head sometimes. And then after I finish the note, I'll feel a little dizzy. I’ll kinda see black circles in [my] vision, you know when you close your eyes really tight and you open them… Stuff like that starts happening, like the start of your vision blacking out. Especially when I'm first learning material and it's not in my body and I'm not used to it. Sometimes holding out high or holding out notes for a long time is the hardest for me. Or passages that go a long time without breath. I think that's hard for everyone, but I think it's especially hard for people with POTS.
Transitioning to sitting felt like a huge adjustment, singing-wise.
I just think about high school choir, even sometimes in professional settings, you know, you’re learning music around the piano and they’re like, ‘alright, everyone stand up!’ Why are people standing up? They’re standing up because, I don’t know, they think they’re going to be able to breathe better and sing higher notes? I’m not really sure, but I think a lot of it has to do with the energy of standing up versus the more relaxed energy of sitting. So, [transitioning to sitting] was more of a mental hurdle than anything, like just figuring out how to have that same energy from a seated position and to be able to maintain enough breath support to sing all the stuff I have to sing.
Charli has gone on to find consistent work in the musical theatre industry and maintains an active career as a performer. They have had the opportunity to play lead roles that they didn’t think were possible, sometimes including the opportunity to share more about their own story.
I just finished a show in which I was originating a role and she was a wheelchair user. She was disabled, the writer of the show is disabled, the assistant director was disabled, and my understudy was disabled. So, I would say when I have the privilege of working on projects in which I'm playing a disabled character and that generally means that there's gonna be other disabled people in the room, that's the best-case scenario as far as accessibility and understanding and being accommodated. There was a section where my character was asked why they use a wheelchair, and I got to work with the writer to basically write a short monologue about my specific disability.
While accessibility is almost a given in a show like that, it is not always the case. Charli has found that accommodations can be like boxes that are ticked, but not quite thought through. They share that one theatre company gave the five-minute breaks every hour as required by Actors Equity Association (AEA), but that was not quite enough time to navigate the wheelchair accessible route to the bathroom and back.
My agent is great about getting accommodations for me, sometimes I’m just like, I don’t know, it’s like I’m almost intimidated to ask to use some of my accommodations, if that makes sense. I’m so happy to be there, I’m so grateful to just be in the room. So, it’s really hard in situations like that to speak up when things are not 100% accessible…or maybe technically accessible, but I’m struggling a lot.
There have been directors and choreographers that enjoy the collaboration, figuring out necessary flexibility and accessibility for staging and choreography. “When it comes to the work and being able to give a good performance, I feel like it’s a little easier for me to speak up. People have been pretty receptive.”
When asked what teachers should know when working with singers with POTS, Charli says “their students just need to know that they believe that it’s possible. Because if the teacher doesn’t even believe it’s possible, how is the student going to believe it’s possible?”
