REFLECTION

KATIE PALMER - INTERNATIONAL NOONAN SYNDROME ADVOCATE

Hosted by Erica Jolene and Kristyn Newbern | Transcription HERE


 





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In this classic Afterthoughts episode, Kristyn and Erica reflect on last week's episode with Noonan Syndrome advocate Katie Palmer. They cover a wide range of heartfelt topics that include the power of connecting through hearing a person's story, the lack of disability representation in our society, and how certain privileges influence all these themes - even in the rare disease community.


[Image Description: Sage-green background with a white font that reads, “Reflection, A Shift in Perspective and the Power of Disability Representation.” Framed in a circle at the center of the image is a photo of young Luke looking down toward the ground as he walks through the grass. He is wearing a denim blue shirt with his sandy blonde hair swept to the side. You can tell he is smiling at something that is intriguing him, but that that was, the world will never know.]


Links related to this episode:

Noonan Syndrome

 

Episode Transcription


Erica

Welcome to Atypical Truth. I'm your host, Erica Jolene. Throughout this season, I have the honor of being joined by a guest host, Kristyn Newbern. She's the mom of Luke, who was born with congenital heart defects and later diagnosed with Noonan Syndrome. In today's episode, Kristyn and I reflect on the perspective-shifting conversation we had with Katie Palmer. So if you've yet to listen to last week's episode titled, "Family Advocate." I would highly recommend that you listen to that first, for more context regarding what we're going to be discussing today. In just about every episode, I make a point to state my belief in the power of a person's story. My intention behind starting this podcast was to share the stories of people in my community, the community of rare diseases, disabilities, and complex medical conditions. And while my mission is steeped in my desire for myself and the world, in general, to feel more connected to this community through hearing our stories. That doesn't mean that every person with a disability shares that same desire. So it's important to acknowledge that, number one, no one owes me or the world their story. Number two, not all people feel safe in broadcasting their story. And number three, not all people have access to share their story. As a podcast host, I take the responsibility of these three important factors very seriously. In doing so, I have a meticulous and transparent process for preparing and recording our guests. What many people may not know is that before I publish any episode, it goes through a rigorous review by both myself and the guests. I do not alter any statements. And I never publish something if a guest has indicated that they're uncomfortable or unhappy with it. This is how I ensure that every guest feels safe, and trusts me with their time and their words. To honor the fact that these people have trusted me with their story, I do my best to produce the show in a way that makes them feel proud of what they've shared. This is the most time-intensive part. But it is also my personal favorite. To me, it's a lot like sewing with sound. I love how I get to intentionally weave a subtle musical score, to light up their words, or to bring us down into a valley with them. I try to bring you into that moment with us front and center as the conversation unfolds. But more than anything, I just want our guests to hear their beautiful stories and to feel safe, seen, and heard. You might be thinking, "Okay, Erica, I never asked about your process." But I do have a reason for sharing all of this, because it's relevant to the themes that we discussed at length today as we gush about how amazing it is to hear from Katie when she shared her valuable perspective of living with Noonan Syndrome. I really hope you all enjoy this Afterthoughts episode with Kristyn and myself. We spent an evening talking about the power of connecting through hearing or reading someone else's story, the lack of disability representation in our society, and how certain privileges influence all these themes, even in the rare disease community. And lastly, I share how this conversation with Katie challenged my realist tendencies and helped me to shift my own mindset from one of perpetual worry to one of hope and optimism.

Kristyn

I didn't realize what this conversation with Katie meant to me until after we had it. So, I knew it would mean a lot, even from the beginning. And at first, it was because I was reaching not only beyond my comfort zone but beyond the country to contact Katie. Katie is my only guest this season who isn't in my personal inner circle. And even though the first time that I directly spoke to her was to invite her to this podcast, I still felt connected to her, really for over a year before I first reached out to her because of her posts on social media and her advocacy for Noonan Syndrome. Katie writes posts and articles about her childhood, her adolescence, and her young adulthood with Noonan syndrome. And she covers, achievements, challenges, everything from like, minute daily interactions to these existential global themes. Following her on social media made reaching out to her with this podcast interview invite feel like I was contacting a friend. So it made it easier. I knew it would mean a lot to talk to her based on what I already knew from what she had shared. But then, of course, speaking with her directly was a joy. She has this energy and this presence that makes me sit on the edge of my seat to listen to her perspective and her ideas. But I didn't realize until after speaking to Katie why it truly meant so much to me. Every childhood holds a fantasy of the future. What are you going to be when you grow up? Show interest in animals, maybe you'll be a vet. Build blocks and adults speculate on whether you'll be an architect or an engineer. Kick a ball, suddenly, you're on a soccer team going to games watching the pros. And of course, with every childhood interest, then comes an entire genre of heroes, athletes, celebrities, innovators, leaders, professionals at the top of their field. As children, we all find heroes to look up to. I had an incredible amount of privilege throughout my childhood. I am a white, cis-gendered, straight, neurotypical, non-disabled person. On paper, my only truly marginalized identifying quality is being female. While there is still a disparity from equality, people with my combination of physically identifying factors have had representation in those hero categories. Growing up, I could point to at least one or two people who looked like me towards the top of my career aspirations, regardless of what those aspirations were. I never questioned whether a career or lifestyle was an available choice to me based on who I inherently was. And, unfortunately, but admittedly, it's only been in the last five or so years, that I have realized, that consistent, foundational layer of confidence and privilege that that representation provided me to pursue any career of my choosing. And I'm sure we're probably all nodding along, thinking, “Yes, of course, representation matters. We all know this, you know, good point, but kind of hitting this pretty hard Kristyn.” But I want to offer this as a perspective of a parent who was raised in this privilege of representation, and now finds herself in a mad dash to find it for her son. Representation for disability is difficult to find in itself, much less in this rare genetic diagnosis category. And let me put it in perspective, I do not know anyone else with Noonan Syndrome. I have never met anyone in person with Noonan Syndrome. There are no known world leaders, celebrities, heroes with Noonan Syndrome at this point in time. And that makes me ache. I ache for my son who will have heroes and role models to look up to that do resemble him, but he might always perceive a difference or separation that could keep him from visualizing his dreams. It's not something That has always weighed heavily on my mind. Truthfully, most of his baby and toddler life was spent in such medical uncertainty, I really wasn't thinking terribly farther ahead than the present. But now, in this joy of medical stability, I can't help but let my mom's mind wander into the future. And I want my son to see possibility and anything for himself. And that's what really meant so much to me about this conversation with Katie. It was possibility, potential, hope. Katie has Noonan Syndrome. She is a real-life person with hopes and dreams. She is putting in the work to achieve her goals. She has joy in her life, friends, family, happiness, and love. To any parent, finding that kind of connection for your child is wonderful. For a parent who lives in perpetual uncertainty for the future, this conversation was priceless.

Erica

I think about how nervous Katie was in sharing her story. And she's you know, she's expressed that on social media, she expressed that to both of us. Some people don't have the same safety nets that you and I have to share so openly.

Kristyn

Right?

Erica

Maybe our anxiety and our nervousness about sharing our stories are different because we have those safety nets. But for someone like Katie, she wants to be sure that how she represents Noonan Syndrome is inclusive, and encompassing. and doesn't further stigmatize it, or any disability. I think it's really important to keep that in mind. And I really am happy that you addressed that. So thank you, and you did it so eloquently. My goodness.

Kristyn

Well, I respect wholeheartedly the nerves, that Katie feels. I can only imagine the power, also the burden, that comes with having this platform with taking on this role that she has taken on in an advocacy setting, to not speak for all, but to offer perspective. And that's something that is so important, it's so beneficial. She takes that very seriously, she takes that responsibility very seriously. And it's something that at 24, I don't know if I would have been able to take on in such a responsible way that she has and in such a relatable way that she has. So I just want to thank her for doing that and for being such a wonderful resource and connection for me, and for so many families. And honestly, she comes from such a place of authenticity, that I don't think she needs to be nervous.

Erica

When you speak of the authenticity that she has, I can't help but to think of her bravery. The responsibility that comes with the type of advocacy work that she does, and that she takes so very seriously, it does take this really courageous amount of bravery. I agree. I don't know if I would have even been close to that brave at her age. It's impressive. So impressive. I'm just so glad she was able to come and join us. You know, you talked about this feeling of connection to her before you even reached out. And I can relate to that. Because I too have feelings of connection to a family who also had a child with the same rare genetic disorder as our children. They too live across the ocean in a different country and we coordinate our schedules, six hours apart, to face time, and to talk, and love each other. Like I really love this family. I love their kids. I love them. There are so many things about our lives that are completely different, but this one thing, deep down in our genes that we share as a commonality has brought us together. And that is a powerful thing that I don't know. I don't really even know how to express it. But I think people who have experienced it understand that you feel this connection to these people with a shared rare diagnosis. It really humbles you and makes you realize how connected we are as humans. It blows my mind how these people come into our lives, we would have never met without this shared genetic disease. And yet, here they are, and suddenly, they're like family.

Kristyn

Yes, you bring up the rare genetic diagnosis...as a science, genetics is in its infancy. And because of that, related diagnoses under the classification of genetics, we're still navigating how in the world do we approach that as a society, as a culture? What is taboo? What is okay to talk about? What is embraced? And how do we grow in that awareness and in that support of each other? So I bring this up, because I, as a parent, traveling this medical journey with Luke, I have experienced kind of two paths of support, and the first being related to his heart journey. So his medical experience has been most heavily impacted through his heart surgeries. The most invasive trauma that he has experienced, the most uncertainty for his immediate future has been related to his heart. And so, therefore, I have connected very closely and aligned very closely with the heart mom groups, or the Facebook or social media groups that are related to kids with cardiology-related diagnoses. So that group, I will say, in those groups are much more established and more defined. And I would say more publicly acknowledged and accepted. Then the rare genetic diagnoses groups. When you hear about a kid who has had heart surgery, who was born with congenital heart defects, who has recovered time and time, again, from repeated complications related to his heart - that is a universal feeling of connection and sympathy and relatability of wanting to support that child wanting to support that family. When we step to the rare genetic diagnosis category, especially the genetic diagnosis that was inherited, there are questions. There are feelings of guilt, of responsibility as a parent, that perhaps do not equate in that instant, universal empathy from society. So it has been much easier for me to be open about Luke's heart journey than about his genetic diagnosis. And I think that's what makes me so appreciative of Katie because it is such a choice for her to use her platform and to use her experience to connect with families because she is connecting and raising awareness and advocating for people with rare genetic disorders. And that is not as widely acknowledged and accepted and welcomed as something like a heart condition. Being a "heart mom," it's almost like being in a club of sorts. With that instant relatability and, I mean, the literal symbol of a heart is so relatable, it's what we have associated feelings of love with. It's just, it's universal. Therefore, being a heart mom gets you this kind of universal acceptance and feelings of compassion. And it's a little bit easier to announce to the world, that that's what you're dealing with. It's not necessarily easier to deal with. But there's more progress in the awareness category for that.

Erica

It goes back to that representation that you spoke of....

Kristyn

Entirely. Now, I will say an interesting thing that I have realized, or that I have experienced in being in this heart mom club, is that almost every other heart mom or heart parent that I have talked to, they are dealing with a diagnosis that encompasses the heart journey of their child, but is not entirely related to their child's heart. So like Luke, they're dealing with either a genetic diagnosis or an entirely different, medically complex set of challenges, that also includes the heart. And most of them are most publicly comfortable with talking about their child's heart journey. I find that to be so interesting, obviously, so very personally relatable to me and my experience. But it's just so interesting to me, that that is such a shared experience for so many heart parents.

Erica

And I can't help but to think that you know, even in my own experience, we have been similar, where epilepsy is the most concerning aspect of their condition, it's the most life-threatening, it's something we battle with every day. It is the overarching symptom that we have to really manage on a daily basis. The rare genetic mutation, the LSS gene, we don't know enough about it to like point at something about our child and say, "this is LSS." But we know epilepsy. And we know our kid's seizures. And we know they're unique, and they're rare. And I don't know if it's fear or discomfort of talking about the rare disease because of that feeling, because of the feelings of guilt associated with having a child who is inherited something like that from the parents. I very much relate to that, twice over. I think it's honestly a good mix of both. And that does make it challenging because on one hand, you want to be someone who represents this disease, you want to be active in, you know, advocating for it. But you also aren't the person with it, you're the parents. You have no idea what it feels like to live with that what other symptoms are occurring peripherally that your child can't even really communicate with you about yet? Maybe never. So it's so layered. It's amazing that adults won't specifically Katie is living with this rare disease and choosing to empower people, educate families and educate children living with it. There are other adults living with rare diseases doing the same thing. And I just, we cannot get enough of that. It doesn't have to be what they do with their life just because they were born with this. But it is amazing that they're doing that. And that kind of brings me to something that Katie said... Oh, this part of the...this part of the episode really got me. So Katie discussed how just because our children may not grow up to work in your kind of stereotypical style of job or have a career that aligns with this construct of normality, right. She went on to say, that doesn't mean that they're not going to become an author or an artist. She said, "Or, like you Erica, a podcaster." And oh my gosh, has that statement haunted me. I mean, I'm like getting teary. (deep breath) I am 36 years old. It has taken me my entire life, to find my fit in the world. To find a place and a career and a form of artistic expression that allowed me to utilize all these experiences and lessons that I've learned because I have this unique perspective from having grown up with disabilities that were very visible and then becoming de-cannulated and my disabilities became less visible. And existing in both worlds as a disabled person, but also a parent of children with disabilities. That has just stuck with me. As an adult that stuck with me. So as a parent hearing that, it has shaped me, and it has definitely changed my perspective, in the way that I navigate my own children's futures. I am so thankful that Katie provided that there's a part of me that's frustrated that it took someone else to point that out. But that is why this podcast exists. That's why I'm doing this. Because sometimes you need that outside perspective to just snap you back into hope, into the what-ifs that are more geared and focused on positivity, rather than the what-ifs that are more geared and focused on uncertainty.

Kristyn

I think you bring up such a powerful concept that I've really never had a question or consider, I should say, until recently, and that is this capitalistic value that we put on the lives of our children. This inherent competition that we instill, as a society, between our children and between ourselves as parents. It's something that I grew up with and was surrounded with in my environments - of value being assigned based on the ranking of achievements based on typical criteria of accomplishment. And that's something that until recently, I just assumed was inherently correct, because it inherently existed. So, Katie, like you said, and whether or not she meant to, Katie, challenges that that's such an American construct that we have created and that we live by and that we instill in our children for generations - is that your value is assigned based on the monetary productivity and contribution that you make to our society. And how bleak is that? With that expression, she challenges that entire construct, and I applaud her for that. It's something that I have had to question in just the last five years based on becoming Luke and Ozzy's mom. And it's so I'm so happy that I have what a, what a wonderful new world and what a breath of fresh air it is to assign value based on who my children are. Based on the joy they bring based on the experience that they have and their perspective that they offer. My greatest value as a person is being Luke and Ozzy's mom. So, I guess coming to that realization, it's just it's been awakening. I don't know if there's any other word for it. But I feel like I have, I have realized so much in such a small amount of time, that has readjusted my entire application of value. And I'm so happy for that. I cherish it.

Erica

I wanted to share with you a really amazing thing that happened to me following Katie's episode. I have lived in that world of uncertainty that you speak of, for the entirety of my children's lives. And sometimes you just get used to worst-case scenario in everything. You are so used to having to think and consider that. So-called "other shoe dropping," the potential for catastrophe that just kind of hangs at the peripheral all the time, because it's happened. And sometimes it happens at a moment where we just got comfortable with losing sight of it. And then we get skeptical, right? Don't lose sight of it, or else the bad thing will then happen. Following Katie's interview, I started to entertain the idea of "what-if" not being a negative thing. I started to entertain the possibility of positive, hopeful what-ifs. And this has been a personal challenge and change for me. It's taken a serious, conscientious effort to flip the script of my what-ifs, when I feel them looming, and entering my mind, I tried to flip the script, acknowledge that the fears there, acknowledge that really valid concerns are there. But on the opposite end of those concerns, is also the possibility of potentially good things, of potential non-problems.

Kristyn

You know, Erica, I've never, I've never considered the positive what-ifs. We are protective. And I think in a self-preservation exercise, we try to protect ourselves from either disappointment or not being prepared. And if we acknowledge a worst-case scenario, or if we prepare for a worst-case scenario, then we feel somehow more protected from it.

Erica

And in control of it, right?

Kristyn

Yes, yes. So true. I really like the idea of allowing a positive what if, So, in Luke's life, I have decided to only allow myself one what if at a time. Not to get incepted into an endless loop of what-ifs into worst-case scenarios and encounters. And so I only allow myself one potential negative thing, outcome, without multiple. I like the concept of allowing myself a positive one as well. As I think about the future for Luke, I have no idea what it holds. And up until now, it hasn't been in the realm of you can be anything you want to be if you work hard at it, right? The way that those of us with that much privilege was taught as a child, has been the uncertainty of I want there to be a future. And I want to make it as full of as many possibilities for him as I can. So I think I think I like starting that journey, like you said, by giving myself and giving our family the positive what-ifs. So I might start doing that from now.

Erica

I think we should all challenge ourselves to do the same. That's right, I want to challenge everyone to start entertaining the idea of positive what-ifs, or at least balancing the negatives with the positive. Let's all just agree to start there. I want to thank Katie for challenging me and helping me to find this new shift in my perspective. I've been at this for a while now because we actually recorded Katie's episode a couple of months ago. So I can see firsthand that this shift is hard and it takes serious effort, especially when you're going through the thick of it. It is not an easy process. And it doesn't mean that you instantly trust the thoughts of positive what-ifs, just because you're entertaining them. But if you're not already practicing something like this in your own life, I challenge you to at least start working towards balancing these thoughts. And perhaps it's my hope at least, that over time, maybe the first thought that will come to our mind is not one of the other shoe dropping. But instead, a best-case scenario.


Erica

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