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 ONE
My palms dripped with anxiety as I lay in a hospital bed in Manitowoc, WI. I was sixteen and my mind raced, thinking of how I got here.
Six weeks ago, I had danced to the video “Buffalo Stance” by Neenah Cherry at my best friend Sonja’s house, worrying about nothing. But then Mom picked me up and I lost my balance walking a few feet to the car.
I didn’t get hurt but had confessed to Mom that walking in particular had been getting difficult. I seemed to sway, stagger, and swerve often. Recently, my handwriting had become sloppy and I dropped things a lot.
She 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, he was going to do a spinal tap and I’d have to spend the night.
Now, I dwelled on my fear of needles, which most kids had. The idea of having one stuck into my back terrified me. How long will it take? Will it be a big needle? What if he misses the mark and I end up paralyzed? I imagined a metal sliver sliding through my skin and up my spine and shivered.
I dreamed of getting up and running away. But I knew I’d prolong whatever 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 today.
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 the 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,” he 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.
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 in a week. 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 touch—there was love, not just obligation. The tension in my body released a bit.
As badly 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 stop the flow of water from my eyes. Between sobs, I squeaked out, “Mommy, that hurt.”
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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