Beyond Her Diagnosis: Jennifer Gasner’s Unexpected Life

Beyond Her Diagnosis: Jennifer Garner’s Unexpected Life

ANGELA ROSS:

I'm Angela Ross, and this is SoCal Voices, where we have candid conversations about living and thriving in Southern California. 

When she was 17 years old, San Diego author Jennifer Gasner was diagnosed with Friedrich's Ataxia, or FA, a rare progressive neuromuscular disease. The impact of FA varies from person to person, but generally causes difficulty walking, a loss of coordination, and impaired speech. Initially, Jennifer says she was shocked and in denial about her diagnosis, and at times used alcohol as a way to cope. But ultimately, she decided to live her life with joy. She chronicles her journey in her book, My Unexpected Life, Finding Balance Beyond My Diagnosis. In this episode of SoCal Voices, Jennifer shares how she's living her life with determination, humor, and a positive attitude. Jennifer, welcome to SoCal Voices. So glad to have you here today.

JENNIFER GASNER:

Thank you. I'm so glad to be here.

ANGELA ROSS:

Awesome. You know, before you became an award-winning writer, you were a little girl. And I want to talk a little bit about your life before you were 17. What did you like to do as a child?

JENNIFER GASNER:

I loved, like most girls, I loved to play Barbie. I had three older siblings, but they were all out of the house by the time I was eight. So I was kind of an only child growing up. So I did a lot of playing with the cash register and, you know, playing store and things like that. But music also was a big part of my childhood.

ANGELA ROSS:

Did someone in the family play music or you just appreciated music, you enjoyed it? What was it about music that appealed to you?

JENNIFER GASNER:

No, I think it was something because my siblings were older than me, so much older than me. I tried to like what they liked as a way to relate to them and to allow me to hang out with them. Because when you're a teenager, do you really want your five year old sister hanging out? No. No. Initially, that was a big part of it. And then I actually began to play piano when I was like eight, I think.

ANGELA ROSS:

Yeah. Yeah. That's cool. Who were some of your favorite composers? Or what music did you like to play when you played the piano?

JENNIFER GASNER:

Well, I played a lot of... you know, the traditional pieces, like Fur Elise and things like that. But I also, our household was relatively religious. I went to a parochial grade school and high school. So a lot of what I played also were hymns and spiritual songs.

ANGELA ROSS:

Yeah, yeah. So you're going through your life as a kid. And when did you discover that you had talent as a writer? Did that happen while you were a young person? Younger person, I should say?

JENNIFER GASNER:

Well, I wrote a lot of really horrible poetry. You know,  I mean, I was a child, so my vocabulary was very limited. But I dabbled in poetry until I got into high school and a friend of mine also wrote poetry. And he was amazing. His, he would come up with words, his use of language always took my breath away. And so I guess I kind of stopped because I compared myself to him. I was like, I can never be that good. And so, yeah.

ANGELA ROSS:

That was the end of that, huh?

JENNIFER GASNER:

But when I got into college and stuff, I realized I really much preferred essay questions as opposed to multiple choice. So writing appealed to me, always appealed to me.

ANGELA ROSS:

That's great. You know, thinking about your childhood, who would you say had the biggest influence on you in terms of your worldview, your passion and your drive? Who was that person or who were those people?

JENNIFER GASNER:

Well, probably my siblings, looking back on it, because really all I wanted to do was fit in with them. So they were the ones that pushed me into learning musical artists. Learning how to play the piano and things like that. And I think also, when I got into college, I was doing things that they, to me, they thought were cool. Or were things that I was doing that they would never do.

ANGELA ROSS:

Yeah, yeah. So you're going on, you're living your life, you're emulating your siblings, you're digging the music, you're playing a little piano, writing a little bit. And then you have this experience, you start having these symptoms. Talk about when you first began to experience the symptoms of Friedrich's Ataxia. What was going on?

JENNIFER HASNER:

So I have been clumsy my entire life. I broke my arm, I broke several pairs of glasses, had to have stitches in my eye, or not my eye, like right near my eye, right on my temple. And so I just kind of chalked it up to growing pains or whatever. But then one day I just fell or nearly fell on the way to my car as my mom was waiting for me, picking me up. And I was 16. And I had been having more and more falls lately, and I just had noticed that walking, especially in a straight line, was really difficult. But looking back on that experience, One of the first signs was probably when I was 13 and I was in my sister's wedding and I couldn't walk down the aisle by myself. So I had to have a groomsman walk with me. And again, everyone was like, oh, it's just Jen. She's just, you know, it's the way she is. So, but that fall when I was 16 was what made me go, something's wrong.

ANGELA ROSS:

Yeah, so did you go to the doctor right away? What was the first experiences that you had or what were the first experiences that you had trying to get this diagnosed and figure out what was going on?

JENNIFER GASNER:

First, I went to my pediatrician, and the pediatrician suggested I go see a neurologist, and it was a local neurologist. We lived in a relatively small city. I mean, it was like 60,000 people. It wasn't huge by any means, but they had a neurologist. He did a few tests and told me there was essentially nothing wrong with me. And my mom and I were like, uh... 

ANGELA ROSS:

No. 

JENNIFER GASNER:

Yeah. So then we ended up going to a neurologist at Children's Hospital in Milwaukee, because I lived in Wisconsin at the time. So, and he was the one. We didn't have, this was 1990, so there were no genetic tests or anything like that, which there are now. He just used his skills, his diagnostic skills to figure out what it was. And it was later genetically confirmed when the test became available.

ANGELA ROSS:

Mm hmm. You know, you've talked about the shock and denial that you experienced when you received your diagnosis. Can you share a little bit about that? What you…the phases that you went through, you got hit with this news. And so what happened next?

JENNIFER GASNER:

Well, at first I thought it was not that big of a deal because I was told I had a really mild case, so I didn't really think anything of it. So, Friedrich's Ataxia is under the umbrella of muscular dystrophy, and I was diagnosed like right before Labor Day. So in the 90s, or late 80s, that was Labor Day, was the Jerry Lewis MDA Telethon. So I watched that and I was like, I don't relate to any of these people. these people. They cut, they were talking to a gentleman who was in a wheelchair and they said he has Friedrich's Ataxia and my mouth dropped and I just ran to the bathroom like oh my God my life is over.

ANGELA ROSS:

Mm hmm. Wow.

So this that's the shock. You saw this person and what they were dealing with. And so reality kind of hit it because you saw yourself in a few years or …

JENNIFER GASNER:

Yeah, I had no idea really what it meant. And then my mom brought home some copies from a medical dictionary and said, you know, just read the highlighted parts. Well, I'm a teenage girl. Of course, I'm gonna do what my mom told me not to do.

ANGELA ROSS:

Of course, of course.

JENNIFER GASNER:

So the other, The parts that weren't highlighted were really dire. They talked about dying at 25 and things like that. And I was even more freaked out. But when we went and visited my neurologist, he said, you don't let this stop you from continuing on with your plans, you know. The thing about FA is it's different in everyone who has it. So you may not develop heart issues or any of the things that might lead to an early death. So you just keep going. And that was really helpful for me, and that that was my mentality, although I for sure was still in denial for a couple of years after that.

ANGELA ROSS:

Yeah, yeah. But wow, what an incredible message from your physician to give you that optimism and that hope because the condition is different in everyone and that your future wasn't necessarily what was in the book. Yours was going to be Jennifer's path as opposed to maybe what somebody else's path was. That's really, that's good. Although it's still a lot to deal with for a young person. And so when you talk about being in denial still for a couple of years, that's very understandable. But you know, you're going through this and you decide, look, yeah, I'm in denial. I'm having issues. When did you cross over from the denial that you held onto for a while to deciding, okay, I have to deal with this. It's something that I have. And I am going to face it with joy. How did you get there?

JENNIFER GASNER:

Part of it was because my parents have this idea of going to an MDA support group. And I was kind of like, Okay, whatever. So we go and the room is packed full of people. I'm the youngest by far. And everyone was just so negative. And afterward, I told my parents, I'm not going back to that because this is not the way I want to live my life. 

ANGELA ROSS:

What did they say? 

JENNIFER GASNER:

They were like, okay. I mean, as soon as we got in the elevator, my mom was like, how was that support? She didn't understand it either. That was a huge part of it. But then also, you know, part of my denial, especially my freshman year of college, I was a drinker. So I used alcohol as a way to forget, basically. And it ended up causing all these problems. I thought I was falling a lot more because of it. And so then I said, Okay, I need to stop drinking. That's essentially part of the whole thing as well.

ANGELA ROSS:

Hmm. So then you made the decision to write about your experience and, you know, getting back to when you started writing and earlier in your life, and you saw this, you did the poetry thing, and now you've, you've come through this journey and now you're going to write a book about it. Talk about the journey of writing the book. Why did you decide to write it? And what was that journey like?

JENNIFER GASNER:

Well, initially I had kind of, sorry mom, but initially I had wanted to write it to kind of bash my mother because I still held a lot of resentment towards her.

ANGELA ROSS:

Really?

JENNIFER GASNER:

Towards both my parents.

ANGELA ROSS:

And what was that about?

JENNIFER GASNER:

A lot of different things. They had bought a house like a year after I was diagnosed, and it had a sunken living room. So I was like, well, this… What about what happens when I start using wheelchair? This is not gonna work. So I felt very excluded by them. So that was  huge, which is, again, leads into me making the decision to move to California without them. You know, that was also ingrained in me. So initially I kind of, you know, started out telling some not so great stories about my mother, of both my parents. And then eventually I realized I needed to have some empathy for them. So while I wanted to maintain some of the truth, I wasn't able to completely, you know, obliterate anything that had happened.

ANGELA ROSS:

So in your author's note, you say that writing My Unexpected Life is the most challenging thing you've ever done, and that there were many times that you wanted to give up. So you're writing the book, you make the decision that you're not going to rag on your parents the way that you initially thought about doing, but that you still encountered some times when it was really hard. Yeah. Why did why didn't you give up?

JENNIFER GASNER:

Well, partly because I had a history of doing that, of giving up when things got too hard. And this was one of those things that I knew I couldn't give up on.

ANGELA ROSS:

Yeah, because you have a story to tell and it's compelling. And I'm sure a lot of people have benefited from hearing your story. So it's good that you had that drive to keep going. I'm so glad that you did. If you could select a section of the book or, I don't know, a couple of paragraphs or a chapter that, when you were writing, just really resonated with you. What part of the book is that and why? What's the part that just really hits you in the heart the most?

JENNIFER GASNER:

Well, probably my favorite scene is the opening chapter where I talk about going to the neurologist in my small town and describing the fumbled spinal tap, he did because he had to do it three times. So that, that was one of those scenes. Whenever anyone read it in class, they were like, Oh my God, Jen, this sounds horrible. And so I was very much like, Okay, I'm getting my point across.

Yeah, that’s definitely one of them and I like the scene where I I fall and I, my friend and my roommate come and comfort me because it's one of the times like I had been holding on to letting people really see the frustration and the pain I felt, but that was the one time I really let it out.

ANGELA ROSS:

Yeah. Just the, the candor and the transparency and the authenticity of both of those scenes that you described really, really hit home. The spinal tap one was the one that really got me though. I have to say, I was just like, Oh man, I, you know, it just put, it puts things in perspective and you were, you had so much courage, and you just you wanted it done. Right. But it's still just the incredible bravery. And I don't know that just that really touched me. So, yeah, you write well, and you are getting that point across. I tell you, I really, really felt that. Yeah, I really encourage people to pick up the book and read your story. 

As someone who is living the life that you're living, so much purpose, you’re active, you go out, you speak, you're writing. I'm sure people are inspired by your story. And again, it gives people perspective about what's possible. Stop whining and get up and try because a lot of things are possible. What do most of us who are not dealing with the condition that you have misunderstand about folks we encounter who are having the challenges in life that you have had to face? What are we missing and how can we be better?

JENNIFER GASNER:

Well, I think a lot of it just comes down to expectations. There are so many people who just continually assume she can't do that, you know. There's a great ad out, and I believe it was for World Down Syndrome Day, where the woman says, assume I can, so maybe I will. Like, I think that's a huge, huge part of it. And the other thing too, which kind of relates to it, is that people really think that our entire life is about disability, that it you know, it's always there, which it is, but it's also just a slice of us. It's not the whole picture. Like there's so much more to people than just their disability. Yeah.

ANGELA ROSS:

That's important to know. That's important to know. What have you enjoyed the most about the work that you do now? Your writing, your speaking, what brings you the most joy about it?

JENNIFER GASNER:

When I hear other people can relate, even if they don't have a disability, or they appreciate what I've done. I had one woman who told me she has invisible disabilities and reading my book was the first time she felt seen, which was amazing for me.

ANGELA ROSS:

That's like everything, right? Oh, man. Yeah. Yeah. It lets you know that you're on the right path. You're doing what you're supposed to do when you can impact people like that. That is so beautiful. That's beautiful. Jennifer, where can listeners to this episode go to learn more about you and the work that you're doing?

JENNIFER GASNER:

So my website is jennifergasner.com. Gasner is G-A-S like Sam and N-E-R. And I'm on Instagram at jennygwriter and Facebook as author Jennifer Gasner.

ANGELA ROSS:

Awesome. I encourage everyone to go find you there and follow you. You've got some great content going on. Jennifer, your spirit and resilience really do hold lessons for us all on the power of maintaining a positive attitude, a sense of humor when life presents us a detour. I thank you so much for joining me today. I feel really enriched having been able to see you and speak to you after having read your your written words. And it's just you are just a joy and I appreciate you very much. Thanks so much for spending some time with me today.

JENNIFER GASNER:

Thank you so much.

ANGELA ROSS:

Thanks for listening. I'm Angela Ross, creator and host of SoCal Voices. Our editor is Chris Donovan of This Is Funner. Theme music is Nothing More Real by Neil Cross. Let us know what you think about the show or who you'd like for us to feature on SoCal Voices. Send me an email, Angela@socalvoices.com. And please subscribe to SoCal Voices wherever you listen to podcasts.