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.
INTERVIEW
Please tell us about your current release.
It is about my journey from fear to acceptance after being diagnosed with a rare, progressive neuromuscular disease at seventeen in 1990. It includes scenes of discrimination, in employment, when my disability was invisible, and later, when I started to use mobility aids. But it also includes scenes of me being a young woman, obsessed with music and romance, and discovering disability isn’t a bad word.
What inspired you to write this book?
I hoped to increase the accurate representation of people with disabilities in media.
Excerpt
My palms dripped with anxiety as I lay in a hospital bed. I was sixteen, and my mind was racing.
Six weeks ago, my best friend Sonja and I had been dancing in front of the TV to the video for “Buffalo Stance.”
It was colorful and edgy, unlike anything I had ever seen or heard.
Maybe I was lost in a daydream, imagining myself wearing Neneh Cherry’s thick, gold, hoop earrings because, when my mom arrived to pick me
up, I lost my balance as I walked to the car.
After my stumble, I admitted to my mom that I’d noticed how walking
had become more difficult. I often swayed, staggered, and swerved. But it wasn’t just my walking that seemed to be declining. My handwriting had become sloppy, and I dropped things a lot.
My mom took me to the pediatrician who sent me to a neurologist. Dr. Bhatt, a graying Indian man in a white coat, had told me an hour ago that he was going to do a spinal tap and I’d have to spend the night.
And that’s how I ended up here, in a hospital in Manitowoc, Wisconsin, wondering how long this was going to take and how big the needle would be. What if the man in the white coat misses the mark and I end up paralyzed? I imagined a metal sliver sliding through my skin and up my spine. I shivered.
I dreamed of getting up and running away. But I knew I’d prolong what- ever was going to happen, and I needed to get it over with. The doctor offered to have me postpone the procedure, but waiting three days seemed agonizing. So I chose to do it right away.
Three hours later, Dr. Bhatt, strolled in with a female nurse in teal scrubs. She carried a tray covered in a white cloth to conceal the necessary tools of torture. I looked away while tears gushed from my eyes in an instant. My entire body stiffened.
“I apologize for taking so long to get here,” the white coat said. “Please lie on your right side.”
As I rolled onto my arm, my blubbering intensified. My body grew hot.
The nurse came to my side and offered me her arm. “Now, you squeeze as hard as you need to,” she said.
Mom was a blur now, mumbling something about giving the doctor space and leaving the room. I wanted to protest—she was leaving me alone when I needed her most.
But I said nothing and gripped the nurse’s forearm. She caressed my hair. Behind me, I sensed the white coat eyeing my low back, and I was grateful I hadn’t seen the needle.
“Okay, Jennifer.” The white coat let out a massive sigh.
My eyes squinted. I reminded myself to breathe.
There’s no place like home, there’s no place like home.
The numbing injection came first. A pinch in my back, followed by a
stream of heat, signified its arrival. My body tensed, and the tears continued. “Take a deep breath and let it out,” the white coat said.
I complied, but the exercise didn’t ease my nerves.
“One more nip here, and we’ll be done.”
The sharp bite of the needle made me arch my back and let out a shrill scream. The nurse brushed my hair back with one hand while I dug my nails into her other.
The local anesthesia hadn’t helped. I imagined the screeching of sharp nails on a chalkboard as the needle scraped my lower spine.
The white coat let a colossal sigh escape. I wasn’t sure if the noise was good or bad.
“I’m sorry,” the white coat said. “I have to do it again.”
What? Why?
The scraping scene repeated, and the white coat gave another resounding sigh. Tears soaked my pillow, and I went limp, hoping for it all to end.
“. . . Again.” The white coat sounded exasperated.
My belly contorted. I wondered whether the white coat had ever done this before. With the third attempt, a maddened shriek bellowed from me.
“Should I stop?” The white coat asked.
My Unexpected Life: Finding Balance Beyond My Diagnosis
What good would it do to prolong this agony? “No. Get it over with.”
The white coat returned to the task, and two minutes later, he proclaimed, “It’s done.”
The nurse left my side, and Mom returned to my room. Her face was red and looked as if it had been splattered with water.
The nurse grappled with the used weapons.
The white coat turned to me. “I will let you know the results soon. You’ll probably get a headache. We just took a lot of fluid out of your body.”
I said, “Thank you,” remembering my good-girl Lutheran manners through my sobs.
He chuckled as he left and explained that no one had ever thanked him after a spinal tap. That didn’t surprise me.
The white coat and his accomplice exited.
Mom’s fingers glided through my hair like a comb, and her touch was different from the nurse’s—there was love, not just obligation. The tension in my body released a bit.
As much as I wanted to show Mom I was tough and in control of my emotions the way she expected me to be, I gave up trying to stop the flow of water from my eyes. Between sobs, I squeaked out, “Mommy, that hurt.”
What exciting project are you working on next?
I am considering fictionalizing parts of my memoir that I cut or going back to two other pieces I wrote years ago and give them some TLC.
Writing-life-related questions:
When did you first consider yourself a writer?
Ever since I was a tween, probably. I had written a lot of poetry.
Do you write full-time? If so, what’s your workday like? If not, what do you do other than write and how do you find time to write?
I basically do write full-time, but it can vary from 2 to 8 hours each day, including weekends. Sometimes I go to my favorite coffee shop and sometimes I stay home. I no longer work outside of my home, so I definitely have more time to focus. Other than writing, I like to go to the movies or watch British TV.
Fun questions:
What would you say is your interesting writing quirk?
I’ll literally put my laptop on my lap and never use a table.
As a child, what did you want to be when you grew up?
A teacher.
Anything additional you want to share with the readers?
It is my hope that my story can help others see that disability isn’t a tragedy and disabled people have value and the ability to live fulfilling lives.
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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