Vocal Fold Messages
As the resident presses the camera up my nose and the pink of my throat is illuminated on screen, I am surprised by how similar this laryngoscopy pink of my insides is to the pink revealed during previous colonoscopies. A testament to the branding of the regions of the digestive tract that it hadn’t occurred to me that it would all be the same colour. The flexible camera snakes through my nasal cavity down to examine my vocal folds. This is the first time I am seeing this part of me. I have been going for colonoscopies every three years since a night in the ER of blood and portable commodes that ended with a bevvy of medical students gathered in the exam room to see what was wrong with my 23-year-old guts. An audience for my ulcerative colitis diagnosis. I am used to medical students learning on my body, but it is always difficult to shake wondering if this is their first time guiding a camera through a human patient. I communicate my nerves, and the Ear Nose and Throat specialist does an excellent job talking me and the resident through every step of the procedure as the camera finds my vocal folds and I am asked to clear my throat. There are mercifully no such asks during a colonoscopy.
I wasn’t just nervous about the test; I was nervous about the results. My voice had changed. Deeper. Raspier. It would break at unexpected notes. I couldn’t sing along to the radio anymore. Rather, I could but I wouldn’t be able to keep up with the melody and my voice would tire quickly from the effort. I have always been able to carry a tune and have always loved being part of a choir and this vocal change was destabilizing. When I used to work with children, I sang every day. Welcome songs, songs about fish, songs about rocket ships zooming to the moon. Singing as a way to get children’s attention, a way to let them know it was time to tidy up, a way to keep things moving by warning of a transition about to happen. Singing to access community. Voices rising together as parents lifted their babies in the air to take the elevator up and down or bump up and down in our little red wagons. I used to play a road trip game with friends where they would pick an animal and I would sing them the song I inevitably knew. I’m sometimes surprised by the lyrics and tunes hidden in my neural pathways. I love a friend with a guitar and a gathering in a living room to sing together. I was worried this was all lost to me. I was afraid to let others who knew me hear this new voice of mine and I felt insecure about what it meant for new people to meet me as someone who couldn’t sing.
For years I had been experiencing what I call “tired voice.” On high fatigue days it is as though my body is too tired for my diaphragm to push the air upward, my vocal folds lethargic, any resonance weak and weary. People who know me well can hear the subtle hoarseness of my speech and know that all of me is deeply tired. A tell for those paying attention, revealing the status of my otherwise invisible fatigue. This new breaking and cracking and deeper tone was different though. I still had periods of “tired voice,” but I never got back to baseline anymore. I wasn’t able to belt out a song in my kitchen just for fun or have a long conversation without my speech becoming an effort by the end.
As the rasping changes evolved and settled in, I was anxious that this was throat cancer. I worried that the consequences of smoking joints and flower from a little ceramic pipe had caught up with me. Shortly before my voice began disappearing, I had tried a cbd vape pen for the first time and I agonized over whether I had permanently damaged my larynx with burning hot vapour. I was bothered by thoughts of the long-term cancer risk of the immunosuppressive drugs I had taken for 8 years to treat my ulcerative colitis. I was concerned about what would happen next. I waited five months to mention this vocal change to my GP hoping it would just disappear on its own. I was already in the process of finding a new MS treatment and exploring an arthritis diagnosis and we were both reluctant to engage in another diagnostic pursuit with another specialist. We decided to wait a little longer. Six more months of persistent worry and there was no improvement, so she put in a referral.
The doctor showed me my vocal folds. Lewd undulating tissue opening and closing as I sang a scale with the flexible camera inside of me. She explained the movement of air, the necessity of folds being able to smoothly open and to fully close and then she pointed to the two pea sized lumps emerging, misplaced on the layered tissue. I had heard of vocal nodes before. Julie Andrews famously had hers surgically removed, altering her voice forever. There is a scene in Pitch Perfect where one of the characters has nodes and it is played as dramatic for comedic effect as it cuts short her acapella performing ability. Nodes are fairly common callus-like lumps that form from misuse or overuse of the vocal folds. They can usually be treated with vocal rest and speech therapy. These, however, are not the type of nodules that I have. That would be too simple. The doctor describes how typical nodules are formed by friction and are aligned on either side of the vocal folds. My nodules are staggered. They do not match. She tells me this is rare. She tells the resident to pay attention as this is not something she usually sees.
Apparently, I have what they call bamboo nodules or rheumatoid nodules. These are not caused by friction and overuse, they are caused by my immune system attacking my voice. Of course it is. As I play autoimmune whackamole trying to suppress my overactive immune system from destroying my myelin, or my colon, it is getting creative. It is trying new things. It is finding new cells to identify as a threat and has decided to exert dominance by silencing me.
It is not cancer, and I am relieved. It is not life threatening and I am relieved. When I ask the doctor how it can be treated, she says she can offer steroid injections into the nodules or that they can be surgically removed but there are risks of scar tissue and permanent damage to my voice. Because they are caused by an autoimmune issue it is likely they will just come back. She says the first course of action is to treat the underlying condition. I laugh because I have just spent a year on an MS medication that wipes out my T and B cells and am getting ready for year two. I laugh because the rheumatologist plans to put me on yet another immunosuppressant once my lymphocytes recover from this two-year immune system reset. I laugh because I have been suppressing my immune system in one way or another almost consistently since that colonoscopy at age 23 and my body refuses to relent. If I could treat the underlying condition, I would! It feels like all I do is navigate around reigning in this immune system of mine as it rebels against suppression to remind me of its power. Like a sea witch rising from the ocean, taking my voice.
There is all this work around autoimmune diseases being messages from your body. The Body Keeps the Score. When the Body Says No. An understanding of how stress and trauma work their way into flesh and function. I have a history of taking this work personally. Of feeling like this truth means that it is my fault. That I’m not healing fast enough, regulating my emotions well enough, eating enough anti-inflammatory foods, meditating frequently enough. That if I had managed stress better earlier in life, I wouldn’t be overwhelmed with a body that confuses self-protection and self-destruction. This hurt reaction to the research likely further solidifies me as an autoimmune archetype.
I am trying to shift my hurt feelings into self-compassion. Noticing my thoughts repeating “there are so many things wrong with me” and trying to reframe. My body needs rest. My body needs care. I have a body that is not subtle. My first MS attack happened in a moment where I was in a relational situation, I felt I couldn’t leave. My body took dissociation to the extreme, numbness creeping up every inch. “You don’t want to be here? Let me show you what it feels like to disappear.” I struggle to feel certain about my wants and needs and have therefore struggled to verbalize or request or demand the way I deserve to be treated. “You don’t want to ask for what you need? Let me show you what it feels like to have no voice.” Poetic justice from my white blood cells. Clear
messages from my multi morbidities.
The doctor asks if she can use the video they have taken for teaching. My enigmatic body a curiosity for med students to compare to typical vocal folds, to textbook pictures of nodules. We plan that I will return for a check in in 6 months and she refers me to the speech therapist. She empathizes about how hard it is to not have an immune system during a pandemic. She joins my laughter and says, “your body really hates you, eh?” and I add another specialist to my roster.
Eighteen years since my immune system declared displeasure about the way I was existing in the world and now I coordinate with 6 doctors, an osteopath, massage therapist, chiropodist, a naturopath, a psychotherapist and now a speech therapist all to maintain this body of mine.
I don’t know if these nodules will heal, but I incorporate daily vocal warmups and learn how to feel the air move up through my body, sending my words up and out from diaphragm to lungs to vocal folds then letting the sound go. Resonating out instead of holding and dampening words in my throat. Breathing in and letting go. Each syllable a fully grounded sound. Shifting to a fullness that wants to be heard. Do I want to be heard? Dropping my shoulders as I notice the holding. The reticence to be fully present in my voice. I wonder when this started; whether it was always there or if this shrinking of breath and voice is part of my disappearance in depression over the last few years. I wonder what it would be like to breathe fully in conversation and not just in meditation. I feel the little spark of fear as I wonder if I am capable of staying in this fullness of breath, this active letting go of each word regardless of these bulging vocal fold interruptions.
Maybe practicing staying in the fullness of my voice when talking about the weather or ordering a coffee will make it easier to voice my wants and needs when they reveal themselves. Maybe breathing and speaking in this way will tell my body that I can be trusted to be present, be clear, and let go. Maybe I was looking in the wrong places trying to find the underlying condition in the first place and I have stumbled into an active treatment that will sooth my immune system’s need to protect me with aggressive ailments. Maybe finding this new voice will finally invite my body to feel safe and heard.
Read Rebecca Wood’s poems in this issue of Wordgathering.
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About the Author
Rebecca Wood lives with her plants and craft supplies in Toronto, Canada, and has been navigating an overactive immune system since the age of 19. She has graduate degrees in Early Childhood Studies and Women and Gender Studies and currently works in the Disability sector. Her writing explores themes of bodies, identity, magic, and grief.