Hosted by Erica Jolene | Transcription HERE
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Hello friends, welcome to Atypical Truth. I am your host Erica Jolene.
I grew up with disabilities and I am now a mother of two with complex medical conditions. From suctioning my own tracheostomy at two years old, pretending my g-tube stoma was an extra belly button, countless surgeries, and frequent hospitalizations; I am revisiting much of my childhood with my own kids, managing many of the same things with the addition of intractable malignant migrating epilepsy. There is no denying that my voice and my children are perfectly imperfect miracles, but even the lives of those blessed with miracles are messy. Here on Atypical Truth we explore the spectrum of miracles, messiness, triumphs, and hardships that pertain to the lives of those impacted by disabilities.
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Research conducted in relation to this podcast, "Telling the Atypical Truth: Disability Community-Building Through Podcasting," can be found HERE.
Hello friends, welcome to Atypical Truth. My name is Erica Jolene, I am the host and creator of this podcast.
Atypical Truth is a podcast meant for individuals who have been impacted by complex medical conditions. This podcast aims to build a community others refer to when in need of finding their people, using their voice, and hearing stories that mirror their own. It is my hope for this podcast to be an accessible space where people like myself can feel safe to explore vulnerable subject matter free of judgment.
Through the stories and experiences shared by guests and myself, it is my hope that this podcast will serve as an informative resource to families like our own, helping those within our community to feel connected, empowered, and understood.
A little bit about me: I was born with tracheoesophageal fistula and non-isolated esophageal atresia, which resulted in me having paralyzed vocal cords. I was mute until the age of 3, g-tube dependent until the age of 5, and trach dependent until I was 15 years old. According to the specialists, it’s a miracle that I can talk, eat, and drink on my own. But here I am talking to you right now.
Throughout my childhood and early adulthood, myself and my poor parents faced numerous hardships as we confronted challenges of a complex needs childhood. Those hardships evolved with the shift of having a life-threatening visible disability morph into a life-altering less-visible disability.
And while that certainly is an extremely brief summary of my early life, that brings us up to date...
Today, I am the proud mom of two beautiful and bald miracles, Margot and Caratacus. As a result of an extremely rare and only recently discovered genetic mutation, our children have a long list of diagnoses and complex needs.
Despite being two years apart, they are nearly identical in every way, including their rare brain abnormalities. With the constant care from ourselves and our home-health nurses, they are thriving despite suffering from what has been described as a “catastrophic” form of epilepsy.
They are non-verbal and g-tube dependent. They have cortical visual impairment and cerebral palsy. They are both sassy in their own ways. They have the most dramatic eyerolls and adorable yawns that you ever did see. They are famous among those who know them for being the very best snugglers. And their smiles absolutely light up the room.
Both my childhood and now my parenthood has consisted of numerous surgeries, life-sustaining medical equipment, doctors appointments, frequent hospitalizations, therapy services, hard conversations, difficult decisions; but so many joyful moments to feel incredibly blessed for.
The beginning of my journey as a complex needs parent was equal parts sad and frightening as it was happy and exciting. But the wildest thing about all of this, was my realization that the sum of my life experiences had prepared me to be exactly the mother my children needed me to be.
The word atypical was one we began to hear on repeat throughout the first year of our children’s lives. Initially, I despised this word and all that it stood for because it felt like a medically PC way of saying “different from everyone else.”
But really, the most despised aspect of this word was understanding that it meant we were heading down a path rarely traveled by others, a path where no miracle drug exists , a path with no road signs directing what turns to take or advising what decisions to make, nor any indication what the future might hold. Instead of a fork in the road, our path lead us directly to the abyss where science ends and faith begins
Witnessing my kids smile, use their hands to activate a toy, or to simply look at me and hold that long loving eye contact I spent so long craving...their ability to accomplish these simple tasks has taught me to appreciate the beauty in the unknown, the beauty in the life unlived by so many others. Thanks to them, I began to wear the word atypical with pride and truly embrace the uniqueness of our atypical lives.
The truth component of the title was derived from my desire to shed some light into the lives of all those impacted by disability and complex medical needs. I have now starred in all roles of this complex life - as a patient, friend, parent, caregiver, and medical professional - and I can say with confidence that it is empowering to learn not only about our shared experiences but also our differing perspectives. This insight helps us to better understand the journey, the purpose, and the intentions of all those who enter our complex lives.
There are many layers to the lives lived for those involved in complex needs caregiving, and I personally crave to hear the raw and unfiltered truth about them. Not only do I crave to hear stories from my peers in the trenches of this life, I also want to hear more about the lives of the people who help to pull us out of those trenches…
Atypical Truth will serve as a virtual tribe, if you will, where people like myself can feel safe to explore vulnerable subject matter free of judgment.
For listeners who can relate to content that is shared on Atypical Truth, my hope is for this podcast to serve as a platform to bridge the physical and geographical gap between our rare but shared lives as complex needs caregivers.
So there you have it, that is - with all intent and purposes - what I hope to live up to with this podcast. Be sure to subscribe for updates on the launch of the first episode. It's going to be vulnerable with a capital V as I provide a little glimpse into the origin story behind Atypical Truth.
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.