Hosted by Erica Jolene | Transcription HERE
Here lies a last-minute “studio” selfie for the Margret Messer Research Grant announcement.
Speaking of last minute, there have been A LOT of things I have had to learn at a moment’s notice for this project. Whoever said podcasting was easy probably wasn’t a Type A personality with perfectionist issues. This is not a brag - this personality trait can be problematic and result in a lot of self-induced anxiety.
Still, I am super proud of myself and highly grateful for those who have helped me along the way. I am working through a lot of anxiety about the things I still need to do and fear saying the wrong thing on air or not sounding good enough.
The thing that keeps fueling me is the reminder that this is bigger than me. This is for YOU - my people, my community, the vulnerable voices that “often aren’t allowed vulnerability.”
And with that, I keep pushing forward, one foot in front of the other. I can do this!
Research conducted with this podcast, "Telling the Atypical Truth: Disability Community-Building Through Podcasting," can be found HERE.
Hello, and welcome back to Atypical Truth. It’s me, Erica Jolene. I just want to thank you for the overwhelming show of support and encouragement with the surprise release of my trailer. It was phenomenal. You all lifted me up and just made me feel...comfortable. Thank you for that.
I want to remind everyone that this podcast will be a safe space, where others can share about their own vulnerable experiences without the fear of judgment from others. To set that example, I felt it was best to start this off by sharing some of my own thoughts and feelings of a very personal nature about the things that have influenced me to start this podcast.
As some of you may already know (and I kinda touched on this in the trailer) I was born with esophageal atresia and tracheoesophageal fistula (also known as “TE Fistula”).
In addition to that, I also had bilateral vocal cord paralysis - meaning both of my vocal cords did not function normally, so I was unable to breathe or make any sounds on my own. All of these things added together, they were life-threatening and resulted in me becoming trach and g-tube dependent.
Being mute until the age of three meant that my mother never got to hear her baby cry. She never got to hear me coo, laugh, giggle even babble her name in that super cute toddler fashion. Instead, she adorned me with bells, lots and lots of jingle bells 24/7 no matter the season! I had bells on my wrists, bells around my feet, bells attached to my shoelaces, bells on my clothes. Pretty clever, right?
Even though I had been delayed in my ability to speak, I caught on very quickly because I was often surrounded by adults and medical professionals. My theory is that when a child does not babble or speak in that super adorable toddler-tone, adults often forget to filter the way they communicate around the child. In many ways, this helped me in being able to communicate effectively and clearly in full sentences pretty quickly in my development of speech. This may not be the case for everyone, this was just my way of taking in the world and the words that were around me.
I had a lot of surgeries throughout my childhood and I spent a great deal of time in the hospital as a result of recurring respiratory illness and pneumonia.
Around the age of five, my mom found an article regarding the success of a world-renowned ENT surgeon in Cincinnati, OH. His name was Dr. Cotton. Dr. Cotton agreed to meet with me and he eventually went on to fit me for a new trach design which inevitably changed my life. I am not entirely sure about the specific details of this situation, or how it came to be - I just know that we took a long trip to a big city, I stayed in an awesome Ronald McDonald House that looked like a castle, and I came home with a new and fancy trach. This new design, it allowed me to speak more clearly, breathe independently, and to eventually train myself to breathe on my own, to the point that I could live without being dependent on the trach for the rest of my life.
My childhood, it wasn't easy, but it also wasn’t terrible. Sure, I was teased and bullied to the point of tears throughout elementary school. I was lucky enough to have a few truly top-notch friends who always had my back - special shout-out to my Spice Girls tribe (you know who you are). It's clear to see it now, as an adult, that between the medical trauma and the bullying, I developed some not-so-helpful coping mechanisms. I’ll share more about these coping mechanisms I had developed, as I think it might help other parents to understand the root of unusual or undesirable behavior that their child might be displaying, but that it is going to be an episode entirely of it’s own.
I honestly do not know who I would be today, or how I would have survived the childhood baddies, if it weren't for the support of my family and my friends...
And, ok, that one 1993 Garth Brooks album which I played as loud as the dial would go. Don’t judge….you know you liked it too.
At fifteen yrs old, I was finally able to have the trach removed. It was, in many ways, an extremely freeing experience. As a naive teenager, I saw it as a fresh opportunity to reinvent myself and erase my disability from my identity. (sigh) Oh, what I wouldn’t give to go sit with my 15 yr. old self and have some firm, but gentle and loving words with her. I wish I knew then what I knew now, but few have the luxury of that kind of foresight.
My disability is less obvious now, but it is always present. I get asked with nearly every new interaction if I am sick, regardless if my trach scar is visible or not. I have spent a lifetime fielding unsolicited questions and comments about my voice and the scars on my body. Some of these questions, they stemmed from genuine curiosity and concern for my well-being. You can sense the sincerity through the tone and the approach in which these questions or comments are delivered; and for those, I do not mind taking the time to provide an answer. But others, they are outright hurtful and belittling, they are rooted in discrimination against me being different from the masses. For those, I chose not to acknowledge, not to waste a single utter of my precious voice in formulating a response. They certainly don’t deserve it.
The trajectory in which I traveled throughout life was quite the opposite manner from what societal norms often tell us we should abide by. Perhaps it was because throughout my childhood I had been told so often of the things I could not or would not be able to do that I developed a desire to learn how to do it all. From a young age, I understood that my life was not guaranteed, nor promised to last forever. So considered my life as my chance to collect as many experiences as possible - and finally becoming a mom was one of them.
In 2016, I gave birth to the little girl who would change my life in more ways than I could have ever imagined. I remember my mom always telling me that there is no love comparable to the love you feel for your child, and I felt every bit of that come true the moment Margot entered our world.
However, her birth story is very traumatic and it’s still really difficult for me to talk about. So, I will try to give you a synopsis.
Throughout our pregnancy, we had been keeping an eye on her head size because it measured on the small side around the 20-week mark. I had concerns throughout my pregnancy that she wasn’t moving in ways that I was hearing other pregnant women talk about when they described their children doing barrel rolls and all kinds of wiggles in their belly. I remember one of the doctors looking at the fetal monitoring results and stating “maybe she’s just sleepy right now”. I tried to explain to her that this was the most active Margot ever got. My concerns were dismissed, my instincts were invalidated. It wasn’t until the 36th week when her head still measured small, that’s when my OBGYN said that he felt it was likely just bad measurements because she had always been positioned low, and that it would be pointless to schedule an appointment with a specialist considering I would likely be having the baby before I could even be seen. It’s hard to relive that.
It took me many years to forgive myself for not getting louder when advocating my concerns, for not changing providers when my concerns were dismissed, and for not trusting my mama gut.
For 9 months I had imagined what it would be like to bring our daughter home with us...and I’ll never forget how deeply agonizing it felt to return home with empty arms as my child was traveling 3 hours away, unstable, seizing nonstop, going to a hospital that was best equipped to meet her needs. In those tender moments and days following her birth, the anger I felt for our experience and the profound love that I felt for my child, it provided all the fuel that was required to advocate fiercely from that moment on.
I will share more about their individual stories and my experiences at a later time, but it is important to note that for everything that went wrong during Margot’s birth and unexpected diagnosis, it was later made right and even healed when our son was unexpectedly born with the same rare condition two years later.