Hosted by Erica Jolene | Transcription HERE
Part Two of Telling the Atypical Truth: Disability Community-Building Through Podcasting. Reading from sections “Atypical Motherhood” and “Rare Reality” - Erica shares the unexpected reaction to sharing her daughter’s birth story. Using current research and scholarly work, she describes common and contradicting societal expectations of parenting that impact caregivers to children with a rare or undiagnosed disease. Early episodes are referenced in this Part Two episode.
Research conducted in relation to this podcast, "Telling the Atypical Truth: Disability Community-Building Through Podcasting," can be found HERE.
Links related to this episode:
Currie, G., & Szabo, J. (2020). Social isolation and exclusion: The parents’ experience of caring for children with rare neurodevelopmental disorders. International Journal of Qualitative Studies on Health and Well-Being, 15(1), 1-10. https://doi.org/10.1080/17482631.2020.1725362
Lin, E., Durbin, J., Guerriere, D., Volpe, T., Selick, A., Kennedy, J., Ungar, W. J., & Lero, D. S. (2018). Assessing care-giving demands, resources and costs of family/friend caregivers for persons with mental health disorders: A scoping review. Health & Social Care in the Community, 26(5), 613–634. https://doi.org/10.1111/hsc.12546
Germeni, E., Vallini, I., Bianchetti, M. G., & Schulz, P. J. (2018). Reconstructing normality following the diagnosis of a childhood chronic disease: Does “rare” make a difference? European Journal of Pediatrics, 177(4), 489–495.https://doi.org/10.1007/s00431-017-3085-7
Welcome to Atypical Truth. I'm your host, Erica Jolene. I take seriously, Walter Fisher's contention that humans are storytelling beings. I created this podcast to amplify the stories of people in my community - the community of rare diseases, disabilities, and complex medical conditions. Over the next few weeks prior to the release of Season Two, I'll be releasing some bonus episodes for you. And from the top, I just want to say that these may not be everyone's cup of tea. However, if you're a caregiver to, or an individual with a rare disease, disabilities, or complex medical conditions; you may find these episodes to be very comforting and informative, especially over the course of the next few episodes. I also feel that these episodes will be extremely relevant to any and all professionals who work with the community of people with disabilities, including my fellow disability podcasting peers. Throughout these bonus episodes, I do make reference to scholarly work and current research. And I've provided links to these works and the thesis in the show notes.
In the second episode of the first season of Atypical Truth, I released an episode titled, "Afterthoughts - rebuilding trust, while navigating our new norm." In this episode, I shared the extremely traumatic and vulnerable details of my first child's birth story, when detailing how the healthcare system failed us both.
The care team admitted the error in their ways, they agreed that they would have advocated just as fiercely had it been their own child. They seemed understanding with our frustrations. And yet, they managed to deliver one final blow to us as they handed me paperwork they had filled out, indicating that she was receiving an unnecessary medical transfer.
Yep. Can you feel my rage now? Little did they know, I draft paperwork like this for a living. I knew to read the fine print. And I held that doctor accountable right then and there in our daughter's hospital room. I asked her to look at her child and repeat me what she had just said a moment earlier, "I would have done the same if this were my child."
Really? What do you? What do you have let days go by without results from her MRI, which indicated that she needed higher level care than what you are equipped to provide? Would you have let other doctors and medical staff dismiss your concerns? And after all that, would you sign paperwork agreeing that this was not medically necessary despite a pediatric neurologist, at a higher level institution, requesting that you get this patient to them immediately? No. No, you would not have done the same. If this were your child, you would have done more. And I'm certain of it.
Revisiting these memories was very painful. The pain was visceral. Knowing that it was impossible to change the past to help save myself with the knowledge I currently possess, I realized I had to change the power dynamic of the characters within the narrative - me against the failures of the health care system. Essentially, I had to flip the script of the story. Where I was once a powerless victim of negligence, I'm now the fierce voice of accountability. And as I spoke each word with conviction, I felt empowered by the thought that it might help another woman, or newborn, from experiencing the same unnecessary trauma that we had experienced.
At first, I was overwhelmed with fear. And I found myself shaking as I hit the "publish episode" button. I don't know, I guess I feared that I had over-shared. I feared that people would be put off by the intensity of the details. I just had never shared so openly and so publicly about my experiences, and there was a large part of me that doubted if my story was even worthy of being shared. I comforted myself with thoughts of how this podcast had potential to help others.
To my surprise and relief, immediately upon releasing the episode, I began receiving so many messages of support and encouragement from friends and family - who now had an open invitation to hear about the experiences, they always wanted to know more about the never felt comfortable enough to ask. A few days after the episode's release, I received an unexpected phone call from our pediatrician, who expressed immense gratitude and support for me sharing about my experience. The pediatrician explained that it had moved them, challenged the way they thought, and inspired them to make changes and how they practice medicine.
With that single conversation, I knew that I had done the job I had set out to do. This podcast had influenced a change in the way one person thought, let alone the way one physician now practices medicine. Receiving this feedback, it was promising. If this early episode of the podcast could have an impact on the way medicine is practiced. What other changes might the life of this podcast Inspire?
After listening to the podcast, my friends and family began reaching out and I noticed a shift in their tone. By sharing this part of my journey, on the terms that I had so carefully chosen, I had offered people a new, if not rewritten perspective. As I recounted my experiences, I no longer felt like a helpless, grief stricken, unfortunate statistic. By changing the narrative, I changed myself. Rewriting the narrative, it gave me strength. I was no longer an unlucky woman who experienced a series of unfortunate events. I was now an outspoken advocate, who was holding systems and the people who make them accountable to prevent other women from ever having to endure what I did.
One listener survey respondent and fellow caregiver described the following reaction, they stated, "I've never been more emotionally impacted than when listening to Erica's unbelievable introduction to motherhood. This episode hooked me. And even though my experience wasn't exactly the same, I felt an instant connection to her as a mother who has felt helpless, desperate, infuriated and isolated." End quote. Sharing my story had provided another caregiver, the feeling of connection through our shared experiences of having felt emotions that are not commonly associated with newborns, motherhood, or parenting. And that was exactly the intention for starting this podcast.
According to the Genetic and Rare Disease Information Center in the United States, a disease is considered rare when it affects less than 200,000 individuals. While in the European Union, a disease is considered rare when it affects less than 2,000 people. That's a big difference. According to the CDC, approximately 3% of all babies born in the United States are born with birth defects, which are also the leading cause of infant deaths. That means that in the United States, the likelihood of a child being born with birth defects, is approximately one out of 33 births.
My birth story did not mirror the images I had spent my entire pregnancy digesting through social media. It felt extremely isolating to be thrust into a new norm. Unlike the experiences of a typical pregnancy. birth, postpartum and parenthood; there's no guidebooks to help parents like myself. In truth, I probably would have never read that book had it existed, because like most new parents, I did not believe that would happen to my child. And I say that as a person who was born with birth defects myself. Yes, born with paralyzed vocal cords, which required numerous life-saving surgical procedures, life sustaining medical devices, and equipment, rendered me mute until the age of three trach dependent until the age of 15. And still, I had never considered the rate at which children were born with birth defects and rare diseases. Because again, I just did not think it would happen to my child. No one ever does.
I had no way of knowing that the duration of my pregnancy would be the only time in my life as a parent, when I would be able to relate to my peers in celebrating typical milestones and bonding over shared experiences. The moment Margot was born, I became hyper-aware of the differences between my life and theirs. And with each comparison, I grew more isolated from the quote-unquote, normal life, others were experiencing - the life I felt that I was supposed to have.
While I had fantasized about life as a new mom in the comfort and privacy of our home, I was shocked to experience the feeling of fear and anxiety when our daughter was discharged from the NICU. After several long months, we were finally free to live outside of the bustling hospital walls. But with this new freedom, came an entirely new way of living. And this is a phenomenon that is often referred to as the "new norm."
I felt like I had stumbled on gold when I found a 2018 article titled "Reconstructing normality following the diagnosis of a childhood chronic disease does rare make a difference? by researchers? Sure. Maney Valley me beyond Chetty and Schultz. When examining the reconstruction of normality following the diagnosis of a rare childhood disease, they found that caregivers express the most difficult and psychologically distressing part of their journey to start at the first appearance of symptoms, and to last until a diagnosis is reached. I know firsthand what that is like. During this time, many of us parents are just left wadding in the unknown. While a diagnosis may feel shocking and sad mean, researchers found that many parents expressed an immense amount of relief, because that often signifies a turning point for their journey. For many, a diagnosis leads to information, which then leads to treatment. In this study, parents expressed that receiving a diagnosis allowed the family the opportunity to begin reorganizing their life to adjust to their new definition of normal.
However, as many of us know, this is not the case for all rare diseases. Hence the reason they are called rare. And the more rare a condition is, the more challenging it becomes, and the more time it takes to reach a diagnosis. That is, if a true diagnosis is ever reached. This same study detailed that when a diagnosis cannot be determined, if it is extremely rare, or when it is taking years to discover it; families and patients expressed experiencing fragmentation of care, limited resources, a fragile sense of control, and extreme feelings of social isolation. Hmmmmm. Boy, can I relate to that!
Having a child with an extremely rare disease, complex medical issues, and drug resistant epilepsy; it meant that my worries were complicated by numerous uncontrollable, unknown, and confounding factors that occurred spontaneously and often without warning. In a loud and crowded restaurant, we quickly learned that leaving our home to adventure into public spaces was just not an option. Every loud sound was a seizure trigger. Every flash of light resulted in the epileptic response. My stressors were directly related to the life or death of my child. My dreams for the future were in the forms of minutes and days, rather than years. The victories we celebrated were measured by inch stones instead of milestones. Our child did not have a clear diagnosis, no known cause for the condition, nor a clear cut path for treatment. There was no simple nor pretty, nor easy way to explain to others what was going on. Our lives were a typical from the norm.
Life at home and away from the NICU, it was supposed to be easier. But it was precisely the opposite for us. I had imagined life with a new baby to be busy. Yes, I did. I knew that the nights would be sleepless from clustering feeds, the house would be messy from the cloth diapering, and our home would be filled with adoring visitors anxiously awaiting the chance to hold the new baby. Clearly, I had my first child years before a pandemic. And I have to say, life in our new norm was indeed, very busy. I spent countless hours on the phone with doctors, nurses, insurance companies, therapists and social workers. The nights were, indeed, sleepless. Stacked on the nightstand were endless notebooks filled with data from tracking, timing, and video recording hundreds of clustering seizures. We were constantly debating when to make that dreaded trip to the emergency room. And the house was indeed very, very messy. I tried my hardest to make medical equipment fit into the decor of our home. But there was no disguising their loud and large presence. Our home was, indeed, filled from the mountains of cardboard boxes of supplies, to countertops filled with medication bottles and syringes. Our living quarters felt less like a home and more like a field hospital. There were few visitors, and the visitors we had likely sensed my uninviting anxiety. They came over so excited to hold our child and to see us thriving at home. But once they walked into our makeshift field hospital, it was noticeable how quickly that excitement shifted to nervousness. And I can't say I blame them. We were all nervous. And we were all experiencing discomfort that stemmed from the fact that our child was medically fragile, and our lives were unlike anything either of us had ever experienced before.
I was shocked to learn that the very things I had avoided talking about in social settings, those were exactly the things Atypical Truth listeners described benefiting from hearing about. One listener survey respondent described why they found this aspect of the podcast to be effective. They stated: "I love getting glimpses of her life as a caregiver to her two kids, and her honesty and vulnerability regarding the joys and difficulties of her reality. Also just hearing how the system actually works, or doesn't work, within the family. From finding nurses, to getting the mental health support that's necessary, to getting equipment, to advocating for the children. The actual impact of the life of these caregivers is so all encompassing, and that has taught me a lot." End quote.
In a review of current research examining life as a caregiver of a child with complex medical conditions, I found two social trends that prominently came into play when thinking about the difficulties that caregivers face. First, in the 2020 research article social isolation and exclusion. The parents experience of caring for children with rare neurodevelopmental disorders, written by curry in Basel. They explained that despite the popular phrase, "it takes a village," the normative social structure of parenting within our culture is one that is deeply rooted in the notion of, "taking care of your own." The second social trend was found in the 2018 article titled, assessing caregiving demands, resources and costs of family friend caregivers for persons with mental health disorders, a scoping review. In this article, a number of researchers describe how our healthcare systems are becoming more community centered, rather than hospital centered. And this seems like a good shift on the surface. I mean, it really is - we want our kids at home rather than in an institution. However, they further explain that the expectation of families becoming solely responsible for the care and well-being of patients, in the comfort of their own homes; well, surprise, surprise! That can be overwhelming, especially without the proper social supports in place. And let's face it, for those of us living this life, we all know that our society is lacking those social supports they speak of.
So these two current social trends: the parenting idea of taking care of your own, and this shift from hospital centered care to community centered care; when Koreans have also examined this, they found that caregivers expressed experiences of detachment, fear, and stigma from others. The more rare and the more incurable, that a child's condition is, the more isolation those caregivers experience. Because let's face it, they and their peers are often unfamiliar with the condition and they're not experienced with navigating the challenges that come with a prognosis, which cannot be improved. Our family's adjustment to the new norm, it was not without growing pains, while everyone else seemed to be living peacefully, it felt like we were always sitting at the precipice of extreme. Where most children would survive the common cold, for our children, it was a battle of life or death. Our lives, I mean, they were constantly lived in the red zone. And at a certain point, we just had to learn how to embrace that. It often felt to me that there was no other person on the planet besides my husband, who truly would understand the nuances of our life.
This concludes part two of the research bonus episodes. Next week, I will be sharing excerpts from the sections "Need for Connection" and "Our Stories Matter." As mentioned before, you can find a list of the references mentioned during this episode in the show notes.
The beautiful soundscape behind this podcast is titled "Rugla" performed by my favorite contemporary music collective,