Episode 144
Finding Hope and Balance: A Conversation with Jennifer Gasner
Jennifer Gasner's journey is a compelling testament to resilience in the face of adversity, as she shares her profound experiences following her diagnosis of Friedreich's ataxia at the tender age of seventeen. Initially met with shock, Jennifer transformed her struggle into a powerful narrative of determination and advocacy, actively participating in disability rights movements and fostering a sense of community among those facing similar challenges. Her academic pursuits culminated in a BA in English and a master's degree in recreation, illustrating her unwavering commitment to personal growth despite the constraints imposed by her condition. In her recent work as an author, she encapsulates her life experiences in her memoir, "My Unexpected Life: Finding Balance Beyond My Diagnosis," which seeks to inspire others by conveying that individuals with disabilities possess inherent worth and capabilities. Through this episode, we delve into her insights and the invaluable lessons gleaned from her journey, illuminating the path toward acceptance and empowerment for all individuals navigating the complexities of disability.
A profound exploration of resilience and self-advocacy manifests through the narrative of Jennifer Gasner, who faced the daunting diagnosis of Friedreich's Ataxia at the tender age of seventeen. Initially met with shock, her journey evolved as she adeptly transitioned from the challenges of mobility to embracing life in a wheelchair. Throughout her academic pursuits, including a Bachelor of Arts in English and a Master’s in Recreation, Jennifer's commitment to disability advocacy crystallized. As a prominent figure at the Wisconsin Independent Living Centers, she championed disability rights, intertwining her personal experiences with her advocacy work. Her relocation to San Diego marked a new chapter where she continued to mentor youth and promote awareness about neuromuscular diseases as a FARA ambassador. This episode delves into her story, highlighting her transition from a diagnosis filled with uncertainties to a life defined by empowerment and hope, urging listeners to perceive disability through a lens of capability rather than limitation.
Takeaways:
- The podcast features Jennifer Gasner, who has bravely navigated life with Friedrich's Ataxia since her diagnosis at age 17.
- Jennifer transitioned from walking to using a wheelchair, demonstrating immense determination and resilience throughout her journey.
- She has actively contributed to disability advocacy, emphasizing the importance of embracing disability culture and community support.
- In her book, she chronicles her life journey, highlighting the themes of hope, acceptance, and the importance of self-worth despite challenges.
- Jennifer's experience with mentorship has profoundly influenced her outlook on disability, advocating for a shift in societal perceptions towards inclusivity.
- She encourages individuals with disabilities to recognize their inherent worth and capabilities, asserting that their disabilities do not define them.
Transcript
My guest today is Jennifer Gassner. At 17, Jennifer received the diagnosis of Friedrich's Alexa, a rare and progressive neuromuscular disease. Shock was her initial reaction.
However, determination and humor helped her transition from walking to using a wheelchair. She earned a BA in English at UW Platteville, actively participating in student activities and radio. She later obtained her Ms.
In recreation from Western Illinois University. Jennifer advocated for disability rights at Wisconsin Independent Living Centers, embracing disability culture. At 28, she relocated to San Diego.
r staff with disabilities. In:As a member of the International Memoir Writers association, she was recognized as a member of the month. Her writing appears in Shaking the Tree, volumes two, volumes three, four and six. Feet Under. Yoga, movies and travel occupy her free time.
She resides in San Diego with Gregory and. And her dog. Welcome, Jennifer, to the podcast. Well, Jennifer, welcome to the podcast. How you doing today?
Jennifer Gasner:Good. How are you?
Keith Haney:I'm good. It's good to have you on. I'm looking forward to this conversation.
Jennifer Gasner:Thank you. So am I.
Keith Haney:So I love to ask my guest this question. What's the best piece of advice you ever received?
Jennifer Gasner:Probably from my neurologist, about a month maybe after I was diagnosed, he said, don't let this interview with whatever you have planned, just keep going like this hasn't happened.
Keith Haney:Wow, that's.
Jennifer Gasner:Yeah.
Keith Haney:Because it was trying to encourage you to stay the course because, you know, you never know how this is gonna work out. I like that.
Jennifer Gasner:Yes. Yes. Definitely.
Keith Haney:Gotta give people hope all the time, right? No matter what the situation.
Jennifer Gasner:Yes. And it was good to hear, too, because what I heard or what I read is the worst case scenario for me. I was 17 at the time.
the disease, Disease, it was:The worst case scenario was that I was going to die by the time I was 25.
Keith Haney:Wow.
Jennifer Gasner:And that was eight years. Eight years away. And he at least my neurologist at least told me that's not necessarily the case.
Keith Haney:Yeah, that's definitely. That would be devastating news to 17 to have someone tell you that this is. This is kind of a death sentence. You just don't know.
You never know what God's going to do with those situations.
Jennifer Gasner:Correct.
Keith Haney:I'm curious, Jennifer, who are some people, if you think back to your journey that served as a mentor or inspiration for you?
Jennifer Gasner:Definitely. My boss from the Wisconsin Coalition of Independent Living Centers, Maureen.
She was a huge influence on me in terms of understanding disability culture and all the different things that you are basically socialized or told about disability and how it really differs from the reality.
Keith Haney:Wow. So what are some of the challenges. I know this has been a difficult journey.
What are some of the challenges you've had to overcome because you have such a neat spirit about you? I can just see it from our initial conversation. How do you keep your spirits as. As up as you do with the challenges you may have to deal with?
Jennifer Gasner:Wow. I think there's. There's a little. Because the disease progresses.
I wasn't in using a wheelchair until I was 26, so I had time to sort of get used to the idea so that. I'm sorry, I'm getting lots. Can you repeat the question again?
Keith Haney:Just, you're. You have such a neat spirit. How do you keep yourself, you know, such a positive attitude?
Jennifer Gasner:Yes. Well, I think having that time to sort of understand and get used to it was a big part of it.
But then also I saw a group of people with various neuromuscular diseases. About a year, no, two years after I had been diagnosed, I went to this support group not to end quotes.
And all of the people were obviously very bitter and very feeling sorry for themselves. And I saw that as something I could become easily, but I didn't want to live my life that way.
I realized I wanted to have more of a positive attitude about everything.
Keith Haney:I love that. And I love the fact that you went on to pursue higher education degrees or what inspired you to pursue those degrees.
Jennifer Gasner:Well, initially I have gone to college to pursue a communications degree to be a DJ for a TV personality.
And obviously my voice was different at that point, but you could kind of start to tell that my voice wasn't really going to lend itself to be actively involved in that sort of medium. So I changed my major to English, and I realized that I really love, loved writing.
And so through my bachelor's degree, I was really heavily involved in lots of different student activities. And my involvement in that was what led me to pursue my master's degree initially to be in college student personnel.
But I found out pretty quickly I didn't like it. So I ended up just getting a master's in recreation.
Keith Haney:I love that you're an advocate for people disabilities. Tell us about some of the work that you do.
Jennifer Gasner:So lately it's been mostly writing the book and preparing, promoting Book and talking to people really about their perceptions of people with disabilities and trying to get them to understand and make the shift that we're not incapable of, of doing things. We need to do things differently than the majority of people that, but that just make us, and I say in air quotes again, special.
Keith Haney:Right.
Jennifer Gasner:Like we just want to be treated as human as well. We're capable, we're worthy and, and we're not all, you know, struggling and constantly depressed about that.
You know, the situation we find ourselves in.
Keith Haney:Yeah. That's important to know that you, you're not special. You're just have to do.
Maybe you're the way you may take you a little longer or have to do a different approach, but that doesn't mean that you should be treated differently because you do things differently. Other people do.
Jennifer Gasner:Yeah, yeah. And I've done, you know, different things. I mentored youth with disabilities.
I've helped out my friends who are teachers that are professors at universities with their classes and things like that as well.
Keith Haney:I love it. So tell us about your book, My Unexpected Life Finding Balance beyond my Diagnosis.
Jennifer Gasner:So it's really chronological picture of my life from the time I was 16, so pre diagnosis to about 28. So it's. It's about basically my journey from fear to acceptance after receiving that news at 17.
So I go through college, grad school, a little bit of my early professional career and things like that.
Keith Haney:You have the term balance in your title of your book. What does balance mean to someone like you who's had to kind of maybe do things differently? Other people have.
Jennifer Gasner:Well, that. That's a really interesting question because balance is sort of a difficult thing for anyone with any sort of a taxi.
A taxi is loss of balance and coordination. So I think for me, the balance was really about embracing my identity and not always being so quick to ask for people's. What.
What is the word I'm looking for to. To expect people to accept me despite my disability. Like you. You accept me with my disability no matter what.
Keith Haney:Yeah, that's a good point. How, how have people received your book who picked it up so far?
Jennifer Gasner:I fairly. Well, I don't mean to like say that you get to take any point, but I really appreciated the people, people who say they can relate.
And even, even one of my doctors who write it has said, oh, you really brought to life the feeling being young and being a teenager and really navigating, figuring out are you going to navigate through the world with all of these pressures?
Keith Haney:I love that. What, what words do you want to have for people who are dealing with disabilities.
Maybe kind of a word of encouragement as you've overcome so many things.
Jennifer Gasner:I just think it's really important to keep in mind that you're worthy, you're lovable, and you have lots of abilities, despite what everyone says or implies.
Keith Haney:I love it. So I gotta ask you about Dave Matthews.
So it seems like you have a friendship with this rock star, Dave Matthews, who I think, if I'm not mistaken, just got inducted Rock and Roll hall of Fame. How has that. How is that that connection influenced your. Your life and your writing?
Jennifer Gasner:Well, I don't know really if he's been.
I shouldn't say this, that yes, he's been an influence in my writing because I written about him, but I think he really was instrumental in getting me confidence and in me to really grasp the future I thought I had lost. Because I grew up in Wisconsin and I had always wanted to move to California. That was always in the back of my head.
And because of his friendship and being able to. To get the van that he graciously gave me, I was able to fulfill the dream of moving to California.
So without him there, there really would be probably no fuck or no, no fulfillment of that dream, because being in San Diego was really integral to me finding the writing community and all that.
Keith Haney:Who wants to leave lovely Wisconsin for sunny California though?
Jennifer Gasner:It is. It can be beautiful there with. With doubt.
Keith Haney:I used to live in Wisconsin for. For eight years. So I know what lovely. How lovely the winters are in Wisconsin.
Jennifer Gasner:Where. Where Wisconsin did you live?
Keith Haney:Milwaukee.
Jennifer Gasner:Oh, yeah. I lived there for a while too.
Keith Haney:Yeah. They told me it's never cold there. Then I moved there and it snowed in November and didn't melt until April. So I think they did not.
They were not honest about the weather in Wisconsin.
Jennifer Gasner:Yeah, definitely.
Keith Haney:As you think about your book, you talk about a turning point for you. Tell us a little bit about the turning point you elaborate on in your book.
Jennifer Gasner:I, for. For one huge turning point would be definitely going to this poor group and meeting the.
Meeting a bunch of older people and seeing how bitter they were. That was a huge turning point.
And then the other one was when my boss Maureen, who I spoke about earlier, really explained to me the idea that Jerry Lewis and Christopher Reeve were really not always perceived very well within the disability community. That really shifted my perspective a lot.
Keith Haney:Yeah, that makes sense. So I love to ask my guest this question. Oh, go ahead.
Jennifer Gasner:Oh, I was gonna say, and keep in mind, this is 19. Well, maybe 2,000 so, you know, for current. Current listeners may not know, Jerry Lewis hosted a 10 telethon every year around Labor Day.
And so that was his contribution to defining disability. And Christopher Reeve famously played Superman but had a spinal cord injury.
Keith Haney:So what in the. In the disability community shifted their opinions of those two?
Because we always think of, you know, Christopher Reeves as being so here, you know, heroic after dealing with that spinal injury and Jerry Lewis as being the face of the shrine. Was it not Shriners? What was it? The muscular dystrophy? Right.
Jennifer Gasner:Yeah. A lot of it was to do with their. The way they portrayed disability. It's always something sad and pitiful.
And as people who were not worthy or able to participate at all in life, it was very much from a deficit point of view. And Christopher, really famously, all he wanted was to find a cure for spinal cord injury.
And the cure kind of implies that people with disabilities are not fine the way they are. They need to kind of accept or they should try to meet some. Some standard of able body and to be able to fit into society.
Keith Haney:Now, I can see how that would be very hurtful then, for that community.
If you're trying to fix something all the time and you're not accepting this is who I am and just living with this is who I am for a lot of people who can't be necessarily fixed supposedly, then, yeah, I could see how that would be very hurt.
Jennifer Gasner:Yeah.
Keith Haney:I love to ask my guest this question. Jennifer, what do you want your legacy to be.
Jennifer Gasner:Really? I just hope my legacy is one where I talk. I like to think I talk pretty really about things.
I'm not afraid to be vulnerable, but I also just want to be able to shift somebody's perspective about disability.
Keith Haney:I love that.
And that's so important because I think even just examples you just talked about, about, you know, Christopher Reeves and Jerry Lewis, to know that you're okay being who you are in the situation that God has placed you in is helpful for people who are there and looking for hope. And I think the whole part that we talked about early on in this podcast, everybody needs that hope.
So how can you find hope in your current situation?
Jennifer Gasner:Yeah.
Keith Haney:So where can people hopefully find your book, My Unexpected Life and find Finding Balance and Beyond My Diagnosis?
Jennifer Gasner:So it's available on Amazon and you can order it from almost anywhere you buy books. It's not necessarily going to be on the shelf at your local bookstore, but you can definitely order it through them.
Keith Haney:And where can they connect with you on social media and follow what you're doing.
Jennifer Gasner:I'm on Instagram at Jenny J. Writer and Facebook at Jennifer gaster, author and LinkedIn at Jennifer Gaster.
Keith Haney:Well, Jennifer, thanks so much for coming on the podcast and sharing your story and providing hope.
I pray that people who pick this up and listen to us are inspired by your story and pick up your book and read it and leave a review, because it's important for those who buy the book to leave a review so more people can find it.
Jennifer Gasner:Please.
Keith Haney:Yes, please leave reviews.
Jennifer Gasner:And and if you go to my website, which is jennifer gassner.com you can sign up for the mailing list and you get a link to the playlist for the book because I mention a lot of music.
Keith Haney:Cool. Well, Jennifer, thank you. You have a blessed day. And thanks for being on the show.
Jennifer Gasner:You, too. Thank you so much.
