Jennifer Gasner’s ‘Unexpected Life’ with Friedreich’s Ataxia

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LINDSEY WELLS, HOST: From KVMR and in partnership with FREED, this is Disability Rap. 

JENNIFER GASNER: I was like, I am never, ever dating anyone with a physical disability. I just didn't think it would work. 

WELLS: Today, Jennifer Gasner on her new book, “My Unexpected Life: Finding Balance Beyond My Diagnosis.”  

GASNER: You know if I would have had something like this to read when I was a teenager and young adult going through all these issues, this would have definitely made me feel like, hey, I'm okay. 

WELLS: That's all coming up on Disability Rap. Stay tuned. 

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CARL SIGMOND, HOST: Welcome to Disability Rap. I’m Carl Sigmond with Lindsey Wells. 

WELLS: We are joined today by author Jennifer Gasner. At the tender age of 17, Jennifer was diagnosed with Friedreich’s Ataxia, a rare progressive neuromuscular disease. In her new book, My Unexpected Life: Finding Balance Beyond My Diagnosis she delves into what it was like to start college with this new diagnosis, and how she initially coped with her changing body. Turning to alcohol and getting involved in a toxic relationship were ways she could escape what she was feeling inside. Through a friendship with the hit singer songwriter Dave Matthews, Jennifer realized that even though her life had taken an unexpected turn and she was now a wheelchair user, her life was not over. 

SIGMOND: Jennifer found strength while navigating her new way of life with a disability and does not hold back at all in her book. She really tells it as it is: the good, the bad, the ugly. And for both Lindsey and myself, it really struck very close to home. We are both people with significant disabilities, and I think we share a lot of common feelings and experiences. 

So, Jennifer Gasner, welcome to Disability Rap. It’s great to have you with us. I want to begin by asking you to set the stage for us and for people who may not be familiar with FA. Could you just briefly tell us what it is and how it impacts your body and your life?  

GASNER: FA is basically genetic, both parents have to be carriers of the gene in order for their child to have it. And so the diagnosis age and severity can range. I know people who were diagnosed as young as five, and some people are even diagnosed into their 60s. For me, I was 17. And it started out with just really poor balance. I was really accident prone, I guess, is the way to describe it. And then it just kept getting worse and worse. My handwriting was also getting more difficult and unclear.  

And so as of today, I used a power wheelchair, and I can't transfer by myself anymore. I have a suprapubic catheter, and a colostomy. And my fine motor skills just really are not there. And I have trouble tracking, you know, pointing to different things here and there. But there is one extra caveat, because I also have MS. So I was diagnosed with that nine years ago. So it's difficult to tell whether or not my issues with speech, swallowing and vision are because of the FA or MS. 

WELLS: In the book, he referred to yourself as “Jerry's Kid,” referring to Jerry Lewis. You used to watch the telethons in the late 80s, and early 90s Can you tell me how those telethons resonated with you after your diagnosis? 

GASNER: I actually initially wanted, really wanted to meet Jerry Lewis and find out what he was doing. I thought it was great news really. And then as described in my book, I get into independent living and I figure out that there are a lot of other opinions about him and so I kind of shifted my view of him. 

SIGMOND: Could you just give us a bit more backstory of what Jerry Lewis was doing and then why you found it problematic over time? 

GASNER: Yeah, definitely. I discovered that the look at Jerry Lewis in terms of how he portrayed disability on TV, it was very pitiful is very much a tragedy and gave the impression that people with disabilities just can't do what anyone would like to in the world or find any fulfillment within their life as disabled person. 

SIGMOND: So, what was your own evolution in thinking in terms of Jerry Lewis, and then I guess your exposure to IL? 

GASNER: Yeah, it was definitely my exposure to independent living. My boss opened my eyes, and let me think of how Jerry Lewis in particular, you know, liked to call people, you know, sad and pathetic and things like that. And those were just terms I didn't see in myself or any of my other friends with disabilities. I didn’t see anyone in that way, none of us deserve to be felt that way. And I found out disability was not what he was always portraying it as on screen. 

WELLS: When you initially were diagnosed with FA, did you hold a resentment to your parents for not taking you to a specialist sooner? 

GASNER: Oh, a little bit. I definitely thought something else was wrong and I needed to go see a doctor. And so they waited basically a whole school year, which I didn't necessarily appreciate. But I don't, I don't know whether the outcome would have been different or better, or worse. Well, I know it would have been different but. 

SIGMOND: Yeah, and it feels like you accepted your disability and the progression of it much more than your parents did. Could you tell us a bit about that dynamic, especially as a teenager? 

GASNER: My parents, I think, grew up in a time where you did what the doctor said. Whatever the doctor says is kind of the way it is, and there's nothing to be done. So I think when the doctor tells me, there really is no treatment, no cure, no whatever, that kind of just made them go, okay, there's nothing really we can do. And they were, in retrospect, no, they were probably really overwhelmed. When you're diagnosed with Friedreich’s Ataxia now it's a much different experience, even for the parents, than it was in 1990. Because there just wasn't a whole lot to say or a lot to do. And we weren’t a very communicative family. So it was frustrating. I didn't really understand who to talk to or what to say because I was just shell shocked. 

SIGMOND: Before we ask you to do this reading, I’m just curious to dive in here a bit more, because by the time we get to this part we are gonna ask you to read, you appear much more accepting of your disability than your parents, even at age 18, which was only a year or two after your diagnosis. So, I’m just curious if you could talk a bit about your own progression of acceptance, separate from your parents.  

GASNER: I kind of looked at it like, okay, this is it, this is how my life is gonna be. I knew I didn't have, I wasn't a doctor, I wasn't a scientist at all. I knew I wasn't going to be able to find some magic pill or anything like that. I just knew I had to figure it out. And I just accepted that I’d figure it out, that was it. And at that time, before I read what the part I'm going to read, was when my parents moved into a new house. And so that you know, was difficult because like, I knew something was going on, and my parents didn't do a whole lot. Like they wanted to wait a year, or wait until summer, and I was a little more anxious. I always knew that there was something there. And I also knew, as my dad told me many times, there was nothing that I can do about it. So I just did what I could to figure out how to live.

SIGMOND: Yeah, thank you. Let me just set up this passage. So, like you said, your parents just moved into a new home, and they are actually so proud of how quote unquote accessible it is. And then you get there, and you take one look around. And you go: this is not wheelchair accessible. So, we’re not gonna have you read that part. It’s a great passage. But can you pick up right after that happens in the book?  

GASNER (reading): Mom rushed in through the door to the carport, carrying what appeared to be the mail. I stopped complaining to myself and sat up. I hadn’t noticed it before, but her hair had a hint of gray in it, and she wore jeans and a red top. 

“Can you believe we already got mail?” Mom said while thumbing through her several envelopes. “Most of it’s not for us—but this one’s for you.”  

Her voice got squeaky as she plopped a white envelope in front of me. 

I looked up at her, puzzled. “Me? Who’d be sending me stuff here?”  

I picked up the letter with a return address from the Department of Motor Vehicles and addressed to Mom, not me. “This is for you.” 

Mom said, “I think you should get a handicapped parking permit. This is the paperwork. I will get Dr. Jaradeh to fill out his part. Then, you should have it by summer.” She was smiling. 

Maybe she did realize things were going to change. That didn’t make up for the house. Getting to park in the handicapped parking spots seemed like a surrender to FA and another verification I was part of “that” group. Plus I’d be taking her direction again; that annoyed me. Wasn’t I supposed to figure this out on my own now that I was eighteen? I looked at Mom, feeling confused. 

“Think of the energy you’ll save. I think you should get it—you’d qualify.” 

“What if they tell me I can’t drive at all?” 

“They’d have to test you first, I think.” 

I sighed and rolled my eyes. But I knew it was a risk I had to take, especially if I hoped to maintain my independence as my symptoms progressed. 

SIGMOND: Whoa, so much there. You know, last month, we had Andrew Golibersuch on the show, and he was talking about how the moment he got that disabled parking permit was a pivotal moment in his life and his acceptance of his disability. So, we wanted to ask you the same question. What did that parking placard signify?  

GASNER: Again, I think it just signified that I was a part of the disabled group that I really never imagined I would be a part of. You know, it was kind of the signifier – oh, if you're eligible to park here, that means you truly are disabled. And so it was like, okay, I guess this is where we're headed. 

WELLS: You mentioned about wanting a romantic relationship before your disability progressed. Now looking back on it, what is your mindset now about having relationships? And what would you tell a disabled person who wanted to pursue a romantic relationship? 

GASNER: When I was twenty-six, I was like, I am never ever dating anyone with a physical disability. I just didn't think it would work. I’m sure all my reasons were very ableist. But as soon as I saw my friends with disabilities, or couples where both people had disabilities, I saw it could work. And that definitely changed things. I mean, since then I've dated men in wheelchairs, and without, so.  

WELLS: What would you tell your 17 year old self? And what would you tell other teens that are now being those diagnosed with FA? 

GASNER: I think its really easy to let things get you down especially with FA, because it's always changing. It's almost like you're always grieving a loss of something. But it's also important just to focus on what you have now, what you can do, and let it come. As cliche as it sounds, live your life one day at a time. Some days are gonna be really shitty. And some days are getting be really great. But you definitely have value. That’s my most important thing, I just want other people with disabilities to know they have value. And that they aren't what we've been socialized to believe that, you know, we're burden and all that stuff, we do have value. 

SIGMOND:  Like we said in the intro, you don’t hold back at all in the book, and I’m wondering if you could talk a bit more about the decision to be so open, and in the context of how people with disabilities are generally talked about and portrayed in the media.  

GASNER: Well, I think I decided be so open because one of my writing teachers had said the juicy stuff is the stuff you don't want to talk about, that’s where you’re gonna, you know, get things. And so I think that was part of it. I think part of it was because no one wanted to discuss my bladder issues. And because it was such a difficult thing for me growing up. I thought, you know, if I would have had something like this to read when I was a teenager and young adult going through all these issues, that would have definitely made me feel like, hey, I'm okay, there's still things I could do. And I don't like that stuff on how people with disabilities are viewed in media. That was definitely something that I had never even really thought about. And then my experience with independent living kind of opened my eyes made me realize, oh, wait, these are the ways that we’re usually seen. And, that’s part of my socialization, you know? So I kind of want a call that out a little, and recognize that isn’t really true. 

WELLS: That was our conversation with Jennifer Gasner, her book, My Unexpected Life: Finding Balance Beyond My Diagnosis, is out this month. Her website is JenniferGasner.com.  

And that does it for the show. Disability Rap is produced and edited by Carl Sigmond and Courtney Williams. You can go to our website, disabilityrap.org to listen to past shows, read transcripts and subscribe to the Disability Rap podcast. You can also subscribe to our podcast by searching Disability Rap on any of the major podcast platforms. We are brought to you by KVMR in partnership with FREED and more distributed by PRX, the Public Radio Exchange. I'm Lindsey Wells with Carl Sigmond for another edition of Disability Rap. 

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