My Unexpected Life: Finding Balance Beyond My Diagnosis

By Jennifer Gasner

"A refreshing coming-of-age memoir exploring young love, college, and careers while navigating a progressing disability."-Independent Book Review

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.
 

Hollywood Book Festival Awards Honorable Mention for biography/autobiography

Notable 100 Book, 2023 Shelf Unbound Best Indie Book Competition

Gold Book Award, Literary Titan

April 2024 Author of the Month, San Diego Central Library

Red Ribbon, The Wishing Shelf Book Awards

 

• Language: English
• Publisher: Acorn Publishing
• Release date: Sep 7, 2023
• ISBN: 9798223241140

Book preview

Part 1

O

September 1989

·  ·  ·

September 1992

Chapter One

M

y 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 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 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.

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.

RR

Mom rearranged the thin pillows surrounding me while preparing for my overnight stay in the hospital. I shifted around on the mattress, avoiding lying on my back. I appreciated her mothering, but I was ready for her to go home and stop hovering. Her fixed attention for more than an hour made me claustrophobic.

Mom used the phone beside my bed to call my school and the other local hospital where I worked in the kitchen. She spoke without tears, telling them I’d been admitted following my appointment.

While Mom talked, the sun radiated through the window across the room and I was left thinking about my future. I wanted to distance myself from my parents and my small religious school. Would the test results rule that out? Things must’ve been bad if I had to get an excruciating test done. Would I have to do it again? Whatever the result was, there had to be some way to fix me. Unless . . .

Before I continued down the rabbit hole, Mom hung up the phone and returned to linger at my bedside.

Two hours later, Sonja arrived and hugged me tightly. She had long dishwater blonde hair with stiff ’80s bangs and rosy cheeks like Santa. Her embrace made me feel safe. A few tears trickled down our faces.

Well, now that I know you’re not alone, Mom said, I can go home. She kissed me on the forehead and walked out.

Relieved that my mom was gone, I felt free. I had permission to break down without her judgment. I super-sized my tears, and Sonja joined in. My back ached. This wasn’t how the day was supposed to turn out. But I was glad that the worst of it, it seemed, was over.

Chapter Two

O

n Monday, I climbed the steps to the second floor of school, after a weekend marred by an intense headache and several bouts of gray vomit. I was excited to go out into the warm and bright day even though my head still pounded. I wore an off-white shirt with classic shoulder pads under a multi-colored vest that looked like a tapestry of a forest. A tan leather headband held my blonde hair in place.

Everyone seemed to be staring at me. Given the small size of the high school (200 students), I assumed word had spread that I’d been in the hospital. Maybe they were wondering why I was back in school so soon. I opened my grayish-green locker and emptied my Esprit bag, focusing on my priority of the moment, picture day. I didn’t want to miss it. This was my opportunity to show off my always-present smile and extract a little joy after the trauma of the past three days.

I could be miserable on the inside, but on the outside, I followed Mom’s example: I looked happy.

Two hours later, I dreamed of punching the skinny man wielding the camera. He fussed over my thick glasses while my temples felt like they were being slammed with a relentless hammer. Just take it so I can move on.

The shot of white light jarred my eyes after he took three photos in front of the soft blue backdrop. After every attempt, he frowned.

Can we do one without your glasses? The man said.

Yeah. Even though I always wear them. I just wished to be done.

RR

After lunch, I stood by my locker waiting for the halls to empty so no one would see me leave. After the bell rang, signaling the beginning of the next period, the corridor was silent. I gathered some books, closed my locker with a soft push, and walked to my baby-blue third-hand car, a 1974 Plymouth Volaré.

When I got home, I changed into my all-white uniform for my cafeteria job; I had missed three shifts and didn’t want to miss any more. My head pounded, but I needed the money. And I hoped to gain everyone’s admiration by showing up just a few days after a spinal tap.

I popped my third dose of aspirin for the day and lay on the floor of the living room until it was time to leave for work. I closed my eyes, praying the darkness would dull the pounding in my skull.

The phone rang. It was my boss, concerned about me.

Oh, I just have a little headache, I told her, but I will be there for my shift.

It’s only been three days since you left the hospital. I think you should stay home and get some rest.

I’m fine, really.

No. Take one more day. She wasn’t asking.

I hung up, feeling thankful but mostly disappointed. My legs took me to my room, where I plopped onto my bed and fell asleep. I didn’t wake up until the following day.

RR

Unfortunately, Dr. Bhatt said, two weeks after the spine-scraping event, the spinal tap was inconclusive. I’m sorry we went through all that for nothing. He did not look up from the file on his behemoth desk.

Mom and I sat in front of the white coat in uncomfortable metal chairs. Rain pattered the roof as my fists tightened and I bounced my knees in double time. I had the urge to tell the white coat he didn’t go through shit—I was the one whose spine was dug into.

There’s got to be something wrong, Mom objected, which made me grateful.

In the past, I’d gotten the impression both my parents thought I exaggerated any bodily discomfort I mentioned.

Yeah, what about my handwriting and how I drop stuff?

Let me see you write something, the doctor said. He retrieved a pen and paper from his desk and placed them in front of me.

I glared at him, at his condescending smirk, and pursed my lips. I took the pen between my fingers. My hand was tight and seemed to ignore my direction as I scrawled my signature on the sheet. My cursive looked erratic and sloppy, and I had to concentrate on each letter. The ink seemed to go wherever it wanted. I dropped the pen on the paper and looked up. My eyes burned.

I longed to scream at him, make him agree something was happening, but I knew he needed more proof. Now I’ll do another, copying over that one, I said. You’ll see how different it looks. I repeated my sketch. My hand wavered, overshooting or undershooting the previous version. The two did not match at all.

Well, that’s not anything to worry about, the white coat said.

His words left me baffled. I shot my mom a look of confusion. But— I said.

Look, I can refer you to a specialist if you’d like—in Milwaukee—but I don’t think it’s necessary.

When we were in the car, Mom said, Well, that was helpful.

I sensed the frustration in Mom’s sarcasm and appreciated she was on my side. I wasn’t imagining my body’s changes.

I’ll talk to Dad about going to Milwaukee.

I exhaled and hoped the next doctor I went to would be on my side, too.

RR

My pictures came—they suck, I said as I tossed my school photos on the kitchen table the next night. Mom chopped an onion, preparing our mystery meal dinner—ground beef, cream of mushroom soup, and whatever was usable in the fridge.

I had been so excited to see my pictures in the past, but I was disappointed this time. Not only was I not wearing my signature huge ’80s frames, but also my smile proved I was faking it. Maybe others couldn’t tell, but I knew that forced smile was an attempt to hide my anguish and would soon be my most common method of denial.

Mom took a break from her meal prep and glanced at the clear, plastic envelope containing multiple photos in various sizes. They’re nice.

Whatever. I was half glad and half disappointed Mom hadn’t noticed my pain.

I opened the can of soup, which was more like a vat of gelatinous goo. Dad came home from work and greeted us.

When will dinner be ready? Dad said.

I waited for Mom to bring up the subject of going to Milwaukee to see a specialist, but she kept chopping.

Ten minutes, Mom said, and Dad walked away. I wondered why we never discussed my health as a family, but I didn’t want to be the one to bring it up.

After dinner, once the dishes were clean and Dad was downstairs, Mom said, Your dad thinks we should wait and see how you feel at the end of the school year. Then, we’ll make the appointment if you want to go to Milwaukee.

I rolled my eyes. Whatever. I should have said, "You think things will change? You even told the doctor you think something is wrong, but now you want to wait? What if waiting is a mistake?"

But we weren’t a family that communicated well or often. And Dad called the shots.

I didn’t understand why my parents weren’t more concerned. Weren’t they supposed to protect me? Help me figure these things out? I was convinced something was wrong that needed to be resolved as soon as possible, not in nine to twelve months. The adults seemed to be in deeper denial than I was.

Chapter Three

M

y nerves tingled as I walked into the locker room at school. The bell was about to ring, signaling the end of lunch and I had to check the state of my jeans before I went to class. Moments earlier, I had struggled to get my pants down when I went to the bathroom and knew I had a wet spot. I didn’t know how noticeable the spot was and hoped no one would see it, allowing me to continue ignoring such accidents.

I stood with my back to the full-length mirror and twisted my torso back to see a wet patch about two inches wide on the crotch. My stomach dropped. Why did this keep happening to me? I was 16 and should’ve been able to hold my pee.

I recalled one cloudy day, after school, when I was a tween, I had worn a knee-length denim skirt and walked to the hospital where Mom had worked. A biting draft had come off Lake Michigan, and I had proudly shown off my shaved legs for the first time.

Within two blocks of my destination, the dark building towered over the skyline of two-story homes. The tickle of my bladder began. I squirmed back and forth and begged my body to wait, pleading, pee stay up. But the urge got stronger. I placed my hands in my pockets to hide the fact I used them as a sort of dam, hoping to hold the fluid back. "You’re in the parking lot Jen. All you have to do is get to the entrance." My heart pounded until of relentless pressure became undefeatable. I sighed, allowing the warm liquid to stream down my naked legs.

My eyes focused on my soaked blue socks, and I craned my neck to see if anyone had witnessed my debacle. Seeing no one made me thankful, but I wondered how to hide my messy clothes. The smell of ammonia was faint, and I prayed for the wind to blow it away.

Forty-five minutes later, I said nothing to my mother as we drove home. My chest tightened as we wound through the country roads. I anxiously awaited getting home and stuffing my dirty clothes in my hamper.

Mom said nothing about the incident until two days later as I sat at the piano playing Für Elise. It had been my recital piece the previous summer and was ingrained in my hands.

Jen, we need to talk about your clothes. It’s not right, your having accidents.

My walls went up as I pushed the black and white keys in front of me. But I still caught her words.

You’re being lazy. Don’t wait so long.

I considered telling her I didn’t think I was holding it too long or putting it off. But I didn’t think she would believe me; plus her words made me cower. This subject was too embarrassing to talk about. I continued playing the song that I knew so well.

Now, at 16, in the locker room, I wondered what other explanation there could be.

RR

I sat in my assigned seat in study hall as students wandered in to the big room filled with rows of wooden wrap-around desks. It was a week later and the last period of the day, making me eager for the final bell. A boy, a year ahead of me that I didn’t know well, dropped a piece of paper as he walked by.

Steve was a bit chubby and had a chin that protruded a little (a much subtler version of Jay Leno’s). His brown hair was wiry with tight natural curls.

I picked the paper up and recognized the drawing of a man with wild hair and the words The Cure doodled above the caricature. My heart jumped. He knows music—like me. I didn’t think anyone in school knew of, let alone listened to, The Cure. My familiarity with them was slight at best. But I knew they were different from the hair metal that pounded from the radio.

Steve, you dropped this, I whispered as I reached back and across the aisle to hand the sheet to him.

Steve smiled and took the page.

I don’t have any of their music, but I think they’re cool, I said.

The monitor told the room to be quiet. I didn’t speak to Steve again.

RR

The next day in study hall, I came to my wooden desk. On top was a cassette tape case, and I looked around the room to see if someone would claim the homemade mix.

I thought you would like this. It’s a mix of songs by The Cure, Steve said.

I was surprised that my small comment about the band had led to what often was considered a romantic gesture. I decided it was nothing more than a way to expand my musical knowledge. Cool. Thank you, I’ll listen to it tonight.

When I got home from work, I took the tape to my room and turned on my hand-me-down Panasonic stereo with a turntable that spun too fast and a cassette player. I slid the tape in and pressed play. I lay on the peach carpeted floor and listened. I felt a connection with the somber sounds that included wind chimes and beautiful lyrics. Included were more upbeat songs, and both matched my complicated feelings about my uncertain future.

RR

I rushed up to Steve in the hallway the next morning, as teenagers scrambled to homeroom. Oh my God. We have to go to the library during study hall today. I wanna talk about The Cure, and I want to hear more. Containing my excitement proved impossible.

Steve looked shocked by my enthusiasm and agreed to get passes to the library.

After waiting all day, Steve and I sat in one of the two small, private rooms where we spoke out loud. The square room had windows on three sides to ensure no shenanigans went on. The air smelled of old books and a hint of pine air freshener.

What other bands do you like? I asked. My entire body buzzed.

Blondie, Depeche Mode, R.E.M., The Replacements . . . Steve’s list was long and included many artists, like Queen, The Cars, and The Sex Pistols, that I’d known of or listened to with my much-older siblings.

I love Blondie, too. Oh. And INXS, Duran Duran . . . My list was long too. I am sort of stuck on New Kids on the Block, Madonna, and Debbie Gibson, like every other girl in high school right now. I want to find something different, and I really liked the music you gave me.

I’ll make you another tape, Steve said. With New Order and a few others I think you’ll like.

They don’t play any of this on the radio?

Ha. Not in Northeastern Wisconsin. It’s usually on college radio in bigger cities.

College radio . . . interesting. It occurred to me that college radio may be my ticket to separating myself from the environment I found so narrow and conservative. Maybe the University of Wisconsin, in Madison, was the perfect spot for me. It was a big school in my favorite city.

I welcomed each of the several tapes Steve made for me during the next weeks and began thinking about becoming a DJ. Bands like Depeche Mode and The Cure seemed to have deeper and compelling lyrics that resonated with me. Their expressions of emotion were relatable even though I rarely articulated my own feelings. Music made me feel a little less alone.

Chapter Four

I

noticed a decline in my dexterity and ability to walk without stumbling during the next eight months.

One of my teachers commented on my sloppy penmanship, telling me, You can be neater. I was ashamed by the devolvement of my smooth, clear lines into misshapen, inconsistent scrawls.

And I was excused from doing distance running in gym class because I had sprained my ankles so often. I was more than happy to sit in the bleachers watching my friends run laps around the football field. I hated running anyway and didn’t have the stamina.

But more than my physical state, my mental state was declining. I started sneaking out of school at lunch to drive home. Even though it was Junior year—a crucial year for gaining college acceptance—I had little desire to put much work into my future. I had too many questions about my body to think about school.

No confrontations about my absences came. It seemed I could ditch school whenever I wanted—and I did.

Finally, May came. I sat in the living room doing homework. Wheel of Fortune was on the TV, and Mom puttered in the kitchen behind me. I composed some gibberish for a speech in English class and struggled to make it pretty. The grip on my BIC pen failed two or three times, and I fumbled it on to the table or patterned carpet below.

Why can’t I keep a hold on this? I said to my mom.

You probably had too much caffeine or something, Mom said.

Maybe. I shrugged. But I knew an overdose of soda was an improbable cause for my flimsy grip.

I stopped myself from screaming, Why won’t you admit something is wrong? Why won’t you see me and what’s really happening? But I took a breath and calmly said, I think we need to go to Milwaukee. There has to be an answer.

Chapter Five

M

y parents and I entered a frigid exam room at Children’s Hospital in Milwaukee in August. It was a ninety-minute drive. While I was relieved to see the specialist, Dr. Jaradeh, I hoped this day would not be a repeat of last September’s spinal tap.

I’m sorry you had to come down here, Dr. Jaradeh said. His eyes revealed compassion, and his voice soothed my nerves.

I sat on a large, two-foot-high table surrounded by baby-blue walls. I had room to lay back, spread eagle. But, I sat on the edge, feet on the floor, facing Dr. Jaradeh as he sat on a wheeled stool. Both my parents were in chairs to my left.

We’re going to repeat some of the same tests you did with Dr. Bhatt.

Some . . . not all. Thank God.

He held out his left palm and placed his right on top of it. His right hand flipped quickly over and back, over and back. Your turn.

I followed suit but noticed my pace was slow and did not follow my brain’s commands. The demonstration reminded me of how my pen seemed to take its own path when I wrote, paying no attention to my intentions. The white coat had done the same last year, but I didn’t remember the motion being so awkward.

Dr. Jaradeh held up his index finger. Okay, now touch your nose with your fingertip. Then touch mine.

Another repeat. Another more challenging task. My finger kept missing the doctor’s nose. I don’t get why I can’t do this.

Dr. Jaradeh had me close my eyes, and then he manipulated my fingers and toes up and down to see if I knew what direction they were pointing. I had no trouble discerning my fingers, but my toes seemed to vanish, and I had to guess their location most times. My heart sank a little more as each familiar test left me with the reality of a declining body. Things I had done before with ease and no thought were now difficult and required much focus.

When Dr. Jaradeh brushed a cotton swab over my cheeks, hands, and feet, I noticed a decreased feeling in my lower extremities. He moved on to each area with a quick needle prick, then with an active tuning fork. The fading sensations repeated below my waist. I struggled to believe how much it seemed I was losing.

Good. Now, will you stand with your feet together? The doctor stood, and I followed his direction. I teetered a bit. What the hell was that?

I regained a sense of equilibrium.

Can you do it again, but this time close your eyes. Don’t worry, I’ll catch you, the doctor said.

No problem. Why would he need . . . The room went black, and my body leaned back as my equilibrium failed. Dr. Jaradeh’s hands grabbed my shoulders. My eyes shot open.

Thank you. Have a seat.

I didn’t want to look at my parents for fear of seeing their dismay after watching me fail the tests.

Dr. Jaradeh returned to his stool. Do you wet yourself?

Mom snickered, and humiliation rose to the surface of my skin. Flashes of soaked bottoms, followed by her scolding, shot through my mind.

Mom had always been concerned about other people’s opinions and I didn’t want to embarrass myself either. I shook my head to answer, avoiding everyone’s eyes.

Okay, well, the doctor began, perhaps knowing