Finding my Voice…again.
Hi there. Thank you for reading and supporting our project, Chronically Singing.
I am Marita Stryker, one of the primary researchers behind the project. I don’t have POTS or EDS, but I thought I would share my why, and my own Singer’s Story. I went back and forth about whether to share it, and then whether to put it on the Stories page or here. I don’t want anyone to confuse my condition with the ones that we focus on — so I chose to fill out our survey with my own story and share it here on the blog.
The bottom line is, there appears to be an influx of chronic, rare, and/or invisible health conditions in the world, and they disproportionately affect women. As Joanne wrote about in her blog post, this is likely due to the regular and larger hormonal changes that happen during our life time. Mine appears to be another one on the list…though it may be on the rarer side. I found myself relating and empathizing with my students who are navigating POTS, HSD, and hEDS due to the following similarities:
A long, drawn out, stressful and expensive diagnostic journey
Ripe with gaslighting and shrugging shoulders
Being told that I may have to shift careers and not accepting it
Feeling isolated and frustrated while finding ways to manage my symptoms and appear “normal”
The good news is, much like the conditions we focus on at CS, there are strategies for management, once you find the right care team. This care team includes medical professionals, friends and family that trust you and advocate for you (especially in the small ways), and a voice team that understands your condition and how to support your continued pursuit of what you love.
Here is my Story:
Marita (Age: 35-44)
Singing is an outlet, a vocation, a community, and a fascination.
SINGING PRACTICE
Marita is a professional singer, singing voice specialist, and vocologist. She has primarily performed in musical theater, but also sings jazz, opera, and commercial styles.
MARITA’S STORY
“I had a career as a musical theater performer, sang on cruise ships, national tours, church choirs, and with big bands. For the last ten years, I have taught voice in higher education, supplementing my teaching with quite a bit of study on how the voice works and influences the rest of the body. I am currently trying to get my voice back to the shape it was in before my symptoms began.
On my last cruise ship contract, when reviewing show videos, I noticed that I was whistling or wheezing on many of my inhalations while singing. I wrote it off as a result of recirculated air or what we call "ship lung." But following that contract, I went back to finish my masters and the wheezing continued. I saw the campus doctor who prescribed me an inhaler for exercise-induced asthma, but that didn't seem to do anything. I went to an ENT who sent me for testing for asthma and allergies with no significant result. He then put me on a PPI for reflux, which similarly made no difference. In my last scope with this ENT, he noticed some redness in my trachea below my vocal folds. He suggested I get a CT of my neck, but insurance denied it, even after appealing. While the appeals were happening, I got a job in Japan and decided to start the process over once I got settled. About a year into my time in Japan, I had developed a chronic cough in addition to my wheeze. I saw an ENT who sent me for more scans and testing. I ended up at a pulmonologist (this is all with the added complication of a language barrier) who, after additional testing, told me I had a sensitive bronchial tract and sent me on my way with another inhaler that did nothing. I returned to the ENT who loaded me up with medications until the pandemic hit.
About a year into the pandemic (after four years in Japan) we returned to the States. I went back to school for my doctorate in voice pedagogy and voice science. I also re-started my medical journey, this time starting with a pulmonologist. He looked at the results of my respiratory testing and said it was weird and that I was doing it wrong. He ordered a chest CT as an afterthought to appease me. As part of my studies, I completed an internship with Singing Voice Specialists at some of the nation's top Voice Clinics. While observing in one of the clinics, I apologized for my chronic cough (promising it wasn't COVID) and an ENT/Laryngologist told me to hop up on the chair for a scope. She noticed there was swelling in my trachea below my vocal folds and told me to get a CT scan of my neck. Sure enough, my trachea was 50% narrowed by a buildup of scar tissue. I had basically been breathing through a straw. Thankfully, I had developed a relationship with the voice clinic through my observations and they were able to get me in to see their top laryngologist within two weeks (usually an impossibility). There were many more tests, including a test of muscle and nerve function where they poked needles into my laryngeal muscles through the front of my neck -- NOT FUN! Then finally, the diagnosis. I had idiopathic subglottic stenosis -- for an unknown reason, I had a build up of scar tissue that created a narrowing in my trachea, just below my vocal folds. The idiopathic (no known case) version of this is very rare (or often misdiagnosed), and occurs mostly in white women between the ages of 30-50 (98% of the time).
I had surgery to dilate the area (open it up), and I felt what it was like to breathe normally again for the first time in eight years...almost immediately. About a month later, I was in the car with my husband and kids on a roadtrip to the beach and found myself singing along to Part of Your World in our Disney playlist. I suddenly burst into tears because I realized I hadn't been singing along to music in my car for so long that I couldn't remember doing it. About six months after surgery, I contracted COVID for the first time and one of my first symptoms was wheezing. ISGS can come back very quickly, and for me COVID was the trigger. At the time, I had just gotten a job at St. Olaf College in Minnesota, about an hour from the Mayo Clinic in Rochester. So I immediately set up an appointment for a few days after our move. I was thrilled to find out that they have been researching ISGS and their multiple laryngologists had a protocol for treatment. In my first appointment with Mayo, I was told I was 50% closed again and scheduled surgery for a couple of weeks later. Their procedure is a little bit different than my first one, and combined with their pharmaceutical protocol post-surgery, I am still breathing well two years later.
This will come back, but I feel like I know what to do when it does. It took me about a year to feel confident enough to perform again, not knowing if my breathing and voice would sustain me through an entire performance. But it did. It wasn't my best, but I did it, and I will keep trying. This is why I wanted to start exploring ways to support other singers with chronic conditions. I believe, with a little creativity and a lot of support, we can keep singing...it might just look a little different.”
Has your singing practice or pursuit of singing shifted in any way since your diagnosis/onset of symptoms?
“I feel like I am starting over again. I worked with an incredible SLP/Voice Specialist who helped me with some respiratory training in order to retrain my body for athletic singing. Songs that used to be easy for me are now much more challenging because I am out of practice and learning my voice again, in a way.
Since my symptoms started, I have performed recitals for my masters degree and doctorate, as well as cabarets, choral productions, and I did two musicals. Over time these got more and more difficult because I couldn't get enough air in to sustain phrases. My voice would fatigue more quickly (even though my vocal folds were in great shape) due to a change in how my respiratory and phonatory systems regulate air pressure to produce the sound. I developed a habit of sniffing in order to get air in more quickly...lots of people thought I just had bad allergies. Eventually, I dreaded singing in performance settings. The anxiety around it made the symptoms worse. I knew what I was capable of and it killed me to not be able to share it. I could demonstrate all kinds of things for students in lessons, but trying to sing a whole song felt near impossible when I was closed.”
ACCOMMODATIONS THAT HELP CLAIRE WHILE SINGING
Taking breaks, communicating/disclosing, and giving myself grace...knowing that after a long day of teaching I probably won't be in the best shape to sing my own repertoire.
MARITA’S ADVICE
For singers with her conditions:
Seek the help of a medical and vocal team that knows about your condition. Seek community, but know how to mute that community when the stories get too heavy...not everyone is a worse case, but those who are, need support (they are not you).
For professionals working with singers with these conditions:
If your student discloses symptoms or a condition that they are navigating, seek resources, ask questions, and encourage self-advocacy. Do not attempt to know more than them about what they are navigating, and don't advise until you know more yourself. There are many ways to provide support and guide/teach a voice lesson. Be creative and flexible.
