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.
Episode Transcription
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.
With Margot, our genetics had come back null, or, de novo. We were told there was a low chance of her condition occurring again with subsequent children. Even with all the advancements, we had made in genetics, they are still very limited in what they know. So our second pregnancy was monitored closely by fetal specialists, and all the imaging appeared normal and healthy. No signs of microcephaly.
Much to our surprise, Caratacus (we also call him Cary), it was evident from the moment he was born that he had the same condition, but he was more severely affected. Just like Margot, he had no hair anywhere. Unlike Margot, Cary was encased in what appeared to be like a thick outer layer of skin, they call it a “collodion baby”. And right on cue, he began having seizures almost immediately.
We were so lucky to have an OBGYN who was supportive and gentle with our entire pregnancy. She cried with us in those moments following his birth. Her compassion, it was genuine, it helped us to feel some comfort in that moment. Things got really scary, it was like reliving our worst nightmare. Just like with Margot’s birth story, it was an emotional rollercoaster.
I will always wonder what it would have been like to know of their condition in advance. It doesn’t seem fair to speculate, as either situation, the knowing or the not knowing, they are both hard and helpful in their own ways.
There were so many kind-hearted and generous people who stepped in and made Cary’s entrance into this world a special one. I can honestly say, now as I look back on it, it was as healing of an experience I had hoped for when I imagined having a healthy child, but in all the ways I could have never imagined. Caratacus, he was born exactly as he was always meant to be. He is our missing puzzle piece.
Thanks to Dr. Siegfried, our dermatologist at Cardinal Glennon, and Dr. Choate at Yale University, our DNA was sent off for full genome sequencing which helped us to learn that our children share an extremely rare genetic mutation. This genetic mutation is called Lanosterol Synthase. This resulted in the dermatological presentation of their condition falling within the same group of conditions known as trichothiodystrophy and ichthyosis. It also resulted in their unique brain abnormalities, which then resulted in everything from intractable epilepsy, developmental delays, cerebral palsy, and the list goes on...
So we have a couple of really cute baldies, and they have a whole lot of complex needs. As their adoring parents, we take immense pride in their care and happiness. However, it needs to be said that our path to happiness and joy in this life - it’s been fraught with heavy grief, exhaustion, stress, sadness, and fear.
For our family, there is no “overcoming” their prognosis. There is only acceptance. Acceptance for what we know now and have in the present, and acceptance for all the unknowns that the future holds.
Understanding that our kids have a life-limiting condition, we try to make a point to enjoy our time with them as much as we can while they are here and with us now, because we are never guaranteed a tomorrow.
I do not want to dismiss or gloss over the fact that this has been one of the most difficult and trying times in our lives as individuals and as a couple. For every beautiful and positive moment that we share, there are about a dozen very sad, depressing, ugly-crying moments that we don’t talk about. And to be honest, I really want to change that. You all deserve the truth, that is, in fact, the whole point of this podcast. I want to be sure that new parents on this journey are not just hearing about our experiences in any sort of rosy retrospection, instead, I want them to understand they are not alone in experiencing a full spectrum of emotions, thoughts, and feelings - all of those that can range from dark and scary, to light and optimistic.
However, this complex needs caregiving is all that we have known as parents, we really have little concept of what it is like to experience the stereotypical “normal” parenthood. I am certain that we share many of the same fears and concerns as other parents because at the end of the day, we love our kids with all of our hearts and we only want what is best for them.
To say that this experiencing has been isolating feels like an understatement. Through many years of conversations with our children’s therapists, I began to learn that I was not alone in experiencing feelings of isolation. In fact, there were many other families who felt the same way and longed to connect to one another as much as I did. But there were some big obstacles that I faced, and I think that many other families like our own face, in finding and feeling connected to those other families….
Our circumstances are so rare, what were the odds of finding families like our own within our local rural community? How do the professionals in our lives connect us without violating HIPPA? How do we navigate meeting one another when our children are medically fragile and there are virtually no public spaces that accommodate our children’s needs long enough to spend quality time getting to know one another? And how the hell do we get out to meet alone if one does not have the luxury of having the support of another person who is capable of caring for our children? And what about just not having enough time to devote to meeting new people and investing in new friendships, because you barely can find the time to take care of yourself?
And then, COVID-19 happened. COVID-19, it brought about some big changes for our family as a whole. Our son became very ill at the beginning of this crazy experience, and by the time he was out of the hospital, our state and our jobs had shut down. Without nursing and with our son still struggling, we had to make some difficult decisions. Neither of us could return to work, where we both worked closely with the public. I eventually decided to return to school, but I had no idea what the future held, what careers would make sense a year or ten from now. All I knew is that I had a unique perspective on this life and I was ready to share it.
I decided that the most effective way to deliver support and resources to families like my own would be through a podcast and social media.
So here I am, trying to do just that…
I enjoy warming my voice up with a hot cup of tea. My house is, without a doubt, messy - we are lucky if we go a day without tripping over medical cords, tubes, and wires. There is a pile of clean laundry sitting somewhere waiting to be folded, dishes to be done, supplies to be unpacked, boxes to be broken down for recycling, and a repeat of that whole cycle again tomorrow, and the next day, and the next…I guarantee that one of our dogs will bark in the background, or one of my kids will cough and need suctioning in the middle of an interview, and then one of their many machines will begin to alarm in the background during the worst possible time. I guess I am warning you...
This will be far from perfect. Take caution. I am going to mess up, say the wrong thing, and stumble in my efforts of using the correct language because that is what happens when you attempt to unlearn a lifetime of internalized ableist thinking. ...and I say that as an adult who is only now learning how to embrace my disabled-self, rather than trying to prove myself in spite of my disabilities.
Together, we will navigate sensitive subjects that many of us are too afraid to talk about publicly. I feel that it is critical to also discuss how disability intersects with all of our identities such as race, gender, age, size, class, culture, location, sexuality, and language.
I will be confronting the uncomfortable. I will dissect all the sticky subject matter that our society so badly needs to become unstuck.
I am exploring all perspectives of those whose lives are impacted by complex medical conditions, so that we, as a community, can better understand the significance of each other’s individual experiences and learn from our differing perspectives.
Initially, for this first season, I am examining and sharing about my personal parenthood at the micro-level. Many of the guests you will hear from are people we have come to know me personally while on this journey.
Later, I will travel back in time. I will be sharing my memories, my traumas, my feelings, and my perspective as having lived with disability and complex needs. But it is important for everyone to understand that I am not a mental health professional nor by any means an expert of disabilities and complex needs caregiving. I can only share from my personal account of this subject matter - which is always evolving
The entire goal of this project is to share the stories and lift the voices of those within our community who reside in different places all over the world. In future seasons, I will be handing this platform over to others, perhaps even to you! You will be hearing those within our community as they share their stories and have real, candid, and raw conversations with the people in their circle, at their micro-level.
I want to hear from parents like you, parents whose lives look similar to my own, those who are tired of applying the filters of positivity and perfection for the world because we are learning that if you want to accurately convey the reality of our lives being both unimaginably hard and rewarding, all at once - you do so by sharing your hard-earned, unapologetic truths.
I want to promise you a new episode every other week, and I am fairly certain I will be able to provide that the majority of the time. However, you know as well as me, that this life of ours is unpredictable at best. We often joke that the only consistency in our lives is the nature of them being constantly inconsistent. This certainty of unpredictability it’s what has prevented me from starting this sooner.
So please bear with me if you see an unplanned gap between shows, and reach out if you feel so inclined. Radio silence is usually an indicator when parents like myself need support the most.
If you can relate to this content, and you're interested in being a guest or hosting your own conversation, please don't hesitate to reach out to me. You can reach me through the website at www.atypicaltruth.org. You can also find Atypical Truth on Facebook and Instagram.
One way to help promote this podcast more widely, for those within our disabled and medically complex community, is by sharing it with as many people as possible. By simply taking a few minutes to subscribe, rate, and review this podcast; it will become more visible to those who are searching it out. (You can do so by following this link)
The beautiful soundscape behind this podcast is titled "Rugla" it's performed by my favorite contemporary music collective from Iceland Amiina. The cover art for Atypical Truth was designed by the lovely and very talented Kendall Bell (@littlebell.co). Links for these artists can be found in the show notes.
