Finding Hope and Balance: A Conversation with Jennifer Gasner

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.

She mentored youth through what's Next and co chaired UC San Diego's staff association for staff with disabilities. In 2020, as a FARA ambassador, she championed FARA research and awareness. 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? Good. How are you? I'm good. It's good to have you on. I'm looking forward to this conversation. Thank you. So am I. So I love to ask my guest this question. What's the best piece of advice you ever received? 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. Wow, that's.

Yeah. 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. Yes. Yes. Definitely. Gotta give people hope all the time, right? No matter what the situation. 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. I was diagnosed with a rare disease called Friedreich's ataxia.

And what I read at that time, and there was very little known about the disease, Disease, it was 1990, pre Internet and everything. The worst case scenario was that I was going to die by the time I was 25. Wow. And that was eight years. Eight years away. And he at least my neurologist at least told me that's not necessarily the case. 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. Correct.

I'm curious, Jennifer, who are some people, if you think back to your journey that served as a mentor or inspiration for you? 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. 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? 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? Just, you're. You have such a neat spirit. How do you keep yourself, you know, such a positive attitude? 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. 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. 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. I love that you're an advocate for people disabilities. Tell us about some of the work that you do. 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. Right. 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. 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. 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. I love it.

So tell us about your book, My Unexpected Life Finding Balance beyond my Diagnosis. 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. 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. 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. Yeah, that's a good point. How, how have people received your book who picked it up so far? 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? 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.

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. 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? 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. Who wants to leave lovely Wisconsin for sunny California though? It is. It can be beautiful there with. With doubt. I used to live in Wisconsin for. For eight years. So I know what lovely. How lovely the winters are in Wisconsin. Where. Where Wisconsin did you live? Milwaukee. Oh, yeah.

I lived there for a while too. 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. Yeah, definitely. 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. 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. Yeah, that makes sense. So I love to ask my guest this question. Oh, go ahead. 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. 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. 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. 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. Yeah.

I love to ask my guest this question. Jennifer, what do you want your legacy to be. 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. 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?

Yeah. So where can people hopefully find your book, My Unexpected Life and find Finding Balance and Beyond My Diagnosis? 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. And where can they connect with you on social media and follow what you're doing.

I'm on Instagram at Jenny J. Writer and Facebook at Jennifer gaster, author and LinkedIn at Jennifer Gaster. 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. Please. Yes, please leave reviews.

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. Cool. Well, Jennifer, thank you. You have a blessed day. And thanks for being on the show. You, too. Thank you so much.