Jennifer Gasner was 16 years old when she began noticing she would sway, stumble and stagger while walking around the campus of her Wisconsin high school. Then, she began having bladder control issues.
After months of inconclusive tests, she was finally diagnosed with Friedreich’s Ataxia, a progressive and incurable neurological disorder that she was warned would put her into a wheelchair by age 25 and possibly a grave in her 50s.
A resident of San Diego for the past 22 years, Gasner did end up transitioning to a wheelchair in her mid-20s as her doctors predicted, but life expectancy for people with FA are now much longer today.
During her early college years, Gasner used alcohol and a toxic relationship to cope with her disappointment and fears. But ultimately — with determination, flexibility and a positive mental outlook — she achieved a life beyond her dreams. She’s now sharing what she learned in her memoir “My Unexpected Life: Finding Balance Beyond My Diagnosis,” which was published Sept. 7.
San Diego author Jennifer Gasner.
(Courtesy of Jennifer Gasner)
Gasner said her journey toward acceptance as a person with disabilities was a long and hard one. But after competing in the 1999 Ms. Wheelchair America pageant and meeting other women contestants with happy and fulfilling lives, she readjusted her mindset.
“I thought I’d be ‘less than’ if my body’s abilities deteriorated … But I knew I had value,” she wrote in the book. “I was ashamed I had ever considered that I needed some remedy to be whole.”
To attend college, work a full-time job and live independently, Gasner knew she would need a wheelchair-accessible van, but her family could not afford one. Then, through a music producer friend, she met singer/bandleader Dave Matthews, who welcomed her backstage at many Dave Matthews Band concerts in the 1990s and he bought her the new adaptive van.
Gasner earned an English degree from the University of Wisconsin-Platteville, then a master’s degree in recreation from Western Illinois University, and at age 28, she moved to San Diego. She would later work assisting staff with disabilities at the University of California San Diego. She has served as a mentor for youth with disabilities and in 2020 was named an ambassador for the Friedreich’s Ataxia Research Alliance (FARA).
In 2014, Gasner was diagnosed with multiple sclerosis and was forced to give up her job. But she has been active in the years since with the San Diego Memoir Writers Association and she enjoys yoga, traveling and movies. She now lives in San Diego with her boyfriend Gregory and their dog.
Gasner will talk about her book on Sunday, Sept. 24, at Warwick’s bookstore in La Jolla. She also answered some questions about her life and memoir in a recent interview.
Q: In the closing pages of your book you said you wrote it, in part, to support others living with Friedreich’s Ataxia. What do you think are the most important lessons you learned along the way that hope readers will absorb?
A: I really hope that others with FA, or any disability, and their loved ones recognize that their life is not over. Their lives can be fulfilling. I was very embarrassed about some of the symptoms of FA and I was afraid to speak about them and really help myself. I wish I would’ve spoken up more. Everyone should know they have value — disabled or not.
Q: You were diagnosed with FA in your teens and told that you might only live into your 40s or 50s. How did hearing those words change your life and your outlook for the future?
A: When I first read them, it was devastating. But when I asked my doctor about it, he said it didn’t have to be true. He told me not to put my life on hold and gave me a choice. So I decided I could either focus on what might happen or make some adjustments and find joy however I could.
Q: You are very open in the book about the disappointments you faced, the humiliating moments you experienced with bladder control and your coming-of-age experiences with romance, drinking, sex and more. Why did you want to share those intimate thoughts and experiences with your readers?
A: Two reasons, really. First, one of my memoir teachers said that the real juicy stuff comes from what you do not want to reveal. Second, because I had ignored so much of my bladder issues especially, I felt like I needed to be honest for the book to be real.
Q: One of the central stories in your book is about your friendship with Dave Matthews, who bought you a wheelchair-accessible van, and welcomed you backstage at many of his concerts. What can you say about Dave Matthews as a friend, person and performer and are you still in touch?
A: Unfortunately, I have not seen Dave up close and personal since 2002. So I don’t really know how much he has changed since then. But when I knew him, he was very sincere, and very patient and kind. He’s an amazing performer, and I enjoy his shows whenever I do get to see him. Sometimes it’s hard for me to believe that we have that history.
Q: You write about your own views on ableism as a young woman and how your life experience has changed them. Can you explain ableism and the work that’s needed to change people’s views about people with disabilities?
A: Ableism is devaluing or discriminating against a person with a disability — physical, mental, or cognitive. There is so much work that needs to be done. It’s hard to have a clear and concise answer.
The majority of my discriminatory experiences have been in employment. Statistically people with disabilities are historically under-employed or unemployed. And it hasn’t really changed a lot in the last 30 years. People still have attitudes that a disabled person has no intelligence or abilities. Or they assume that any accommodations that person may need will cost too much.
Much of ableism is systematic. Yes, we have laws like the American With Disabilities Act, but the belief that a disabled life is inferior still exists. I have a coffee cup that says, “my only disability is your attitude.” I believe this. People have told me before they would not hire me because of my wheelchair.
I think if people would recognize disability as a natural experience of any human, maybe those negative beliefs could change. If you live long enough, you are going to be disabled — and there is nothing wrong with that. Disability isn’t a bad thing — it’s part of life.
Q: You titled your book “My Unexpected Life,” and your life has been a very full one. When obstacles were put before you, you never let them stop you. As an ambassador for FARA, what advice do you give to FA patients about pursuing their dreams?
A: I would tell them not to dwell on what they had planned to do with their life. As cliché as it sounds, you have to live your life one day at a time and you’ll probably have to make some adjustments along the way. That’s OK. Being different isn’t good or bad, it’s just different.
Book jacket for Jennifer Gasner’s “My Unexpected Life: Finding Balance Beyond My Diagnosis.”
(Courtesy of Jennifer Gasner)
Warwick’s presents Weekends with Locals with Jennifer Gasner
When: 2:30-4:30 p.m. today
Where: Warwick’s, 7812 Girard Ave., La Jolla
Admission: Free
Online: warwicks.com/event/gasner-2023