Finding Balance Beyond My Diagnosis
Memoir
Date Published: September 7, 2023
Publisher: Acorn Publishing
Jennifer Gasner is seventeen when her dreams are shattered overnight. Receiving a diagnosis of Friedreich’s Ataxia, a rare genetic neuromuscular disease, means she must prepare herself for a life of loss. When she starts college, she can still walk on her own, but as her disease progresses, she spirals further into sadness, denial, and alienation. She turns to alcohol and a toxic relationship to distract her from what she refuses to accept—that her body, her self-esteem, and her hope for her future are failing.
When Jennifer develops a friendship with rock star Dave Matthews, her outlook changes. She begins to understand that using a wheelchair doesn’t mean her life is over. In fact, when she discovers disability culture, she realizes it’s not her body that needs to be fixed but her assumptions about being disabled.
In her captivating memoir, My Unexpected Life: Finding Balance Beyond My Diagnosis, Jennifer invites you into her world, where she must learn to view her changing body with compassion and choose gratitude over anger as she finds strength and acceptance in a whole new way of moving through life.
Excerpt
CHAPTER THIRTY-FOUR
[. . .]
Despite my fixation, I knew nothing about the history of
Dave Matthews Band.
Dave walked out wearing a
long-sleeved, striped shirt. A shorter, kind of shaggy man followed. They
picked up the acoustic guitars from their stands and started strumming as a cue
to the crowd to return to their seats. Blank stares and heavy concentration
seemed to overtake the audience.
My stomach grew more and more tense
as the applause surged between each tune. I was surprised to see the onlookers
sit with respectful silence while the two men executed their setlist. Their
skill and adeptness with their guitars impressed me.
For the third song of the encore,
Dave and Tim played a song that spoke to me from the first chord even though I
had never heard it. The lyrics were muffled, but I discerned they asked about
someone feeling healthy and finding love. A ripple of compassion seemed to be
emanating from the stage.
After the encore, the screams and
adoration began.
“Thank you all very, very much. I’ll
see you again,” Dave said.
I took a slow, deep breath to help
calm the uptight feeling inside me.
#
After the show, Paul and I went to the front of the
auditorium and joined a small collection of fifteen or so people with backstage
passes. Adrenaline rushed through me. I did my best to check my excitement.
“Okay guys, come this way,” a
black-clad man said.
The group walked into a small room
with oak walls. A few stacks of banquet chairs were in the corner, and a couch
sat in the center.
Kevin had made his exit before the encore,
leaving Paul and me to finesse our way to talk to Dave. I hoped the slur in my
voice wouldn’t come out more when I met him. My knuckles ached from my grip on
Ner’s handles.
A scruffy, dishwater-blond gentleman
approached me and said, “You must be Jen. Kevin has been talking about you all
day.” Those words made me feel warm on the inside. The man explained that he
was Dave’s tour manager, Michael.
Smiling, I responded, “Well, he’s
very kind. I guess this means I owe him some money.”
In an instant, a hand appeared in my
line of sight, reaching out for an introduction. “Hi. I’m David. You have to be
Jen. We’ve heard a lot about you.”
I scanned up to find the face the
hand led to. I saw a charcoal gray shirt, a black necklace with a pendant, and
a warm smile I felt unworthy of. It was Dave Matthews. His eyes sparkled under
his damp hair. My heart was ready to burst out of my chest and fall to the
floor. I was delighted that I would not have to explain myself, yet I had to
tell myself to speak.
“Uh, hi,” I replied as I melted on
the inside. “Correction…I owe Kevin a lot of money.”
I sensed others’ eyes on me, as if
they wondered who the hell I was.
Paul snuck in and offered a
handshake to Dave as he declared, “That was a great show.”
After some small talk I lowered my
eyes and asked for a new entry in my pristine autograph book. Dave obliged. To
my delight, he scrawled for a bit.
“Thank you,” I said and took the
book. I didn’t want to look until Paul and I had left.
“Can we get a picture?” I asked.
Paul and I made a Dave Matthews
sandwich and showed off our teeth for the camera. Like most young fan girls, I
thought, Oh my God. I am going to die.
About the Author
Jennifer Gasner received her BA in English from the University of Wisconsin-Platteville and her MS in recreation from Western Illinois University. Her work with Independent Living Centers enabled her to learn about various disability programs throughout the country and ignited her passion for disability culture. She relocated to San Diego, California, on her own at the age of twenty-eight.
As a mentor for What’s Next, a program for youth with disabilities, and as co-chair of UC San Diego’s Staff Association for staff with disabilities, Jennifer solidified her role in the San Diego disability community. In 2020, Jennifer became an ambassador for the Friedreich’s Ataxia Research Alliance (FARA), raising awareness about Friedreich’s Ataxia (FA). She participated in Rare Across America, meeting with legislators to discuss laws affecting more than 25 million Americans living with one or more rare diseases.
Jennifer is a member of the San Diego Memoir Writers Association, and her writing has been published in Shaking the Tree, volumes 3 and 4. In her free time, she enjoys yoga, movies, and traveling. She lives with her boyfriend Gregory and their dog. My Unexpected Life: Finding Balance Beyond My Diagnosis is her first book.
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