They thought she was going to die. At three-and-a-half years old, bed-ridden shivering in a cold sweat, Alison Neuman’s tiny fingers wrap around her mother’s for strength. But even at this age, Alison is determined to beat the odds.
When years of hospitalization robs her of most of her childhood, she finds joy.
When children and adults avoid her like the plague, she finds friendship.
When she cracks her skull in a playground accident, when her math teacher holds her back a grade, and when she is mistreated by the medical professionals that were entrusted to help her, she finds strength.
And even when it becomes clear that the painful disease she has, dermatomyositis, will leave her wheel-chair bound for the rest of her life, Alison does not let it defeat her.
She will conquer it, she will achieve her greatest dreams and along her journey to finding normal, she will find joy, humor, passion and music.
In this inspirational true story, Alison Neuman tells of her daily mission to triumph over pain, to prove wrong the naysayers that say she “cannot”, and become a reminder to us all that can’t is only a mindset and happiness is a choice.
No one ever expected Alison Neuman to live past the age of three, let alone become a successful author and performer.
Now, an inspirational figure, Neuman has never let the painful disease she suffers with, dermatomyositis, dictate what she can and cannot achieve in her life.
An award-winning singer, Neuman has even done dance performances with the iDance and Cripsie Groups in her native Edmonton, Alberta, Canadian hometown. Along the way, she has become a college graduate, earning a degree in creative writing from MacEwen College, despite being told she’d never amount to anything
Searching for Normal is her memoir and anthem to anyone who is suffering through sickness or obstacles that seem too impossible to overcome.
“You can and will achieve life’s greatest dreams,” Neuman says, “if you take it one step at a time; even if that step is while you navigate via a wheelchair.”
For More Information
- Searching for Normal: A Memoir is available at Amazon
- Pick up your copy at Barnes & Noble.
- Discuss this book at PUYB Virtual Book Club at Goodreads.
- Watch the book video at YouTube.
My Review will be coming soon. Please check back. Meanwhile, please enjoy this excerpt from Searching for Normal
I had a fever. My throat hurt. My body hurt. I was tucked in bed with the covers up to my neck and I still felt cold.
Mom put her hand on my forehead for a second. “Do you want some orange juice?”
“Apple.” I croaked.
She smiled and left the room.
I wondered if the juice would make me well enough to visit Tara. She was my new best friend.
Summers were exciting when I was a child; I was able to play outside and explore the neighborhood in my family’s and Tara’s yard. Tara and I were both 3 ½ but she was two weeks younger than me. We lived just three houses apart from one another. She was active in sports, dancing and activities with her older siblings. During our visits, I was always struck by the massive size of her family’s two-story house, which I was convinced was more like a castle, with its expansive space and numerous rooms. Having a larger house was essential for her family as Tara was just one of ten children
In their rumpus room were Fisher-Price toys, Barbies, and a large variety of board games awaiting us—the sheer variety rivaled only by a toy store.
Mom had quit being her job as a nursing aide to stay at home and raise Cliff and me and when the weather was warm enough, Tara and I would play in their large pie-shaped backyard while our Moms sat on the porch and chatted.
I drank the juice and felt even worse. Days passed and my body ached more and more. My parents took me to a doctor who said that I simply had a bad case of the flu. As we were leaving his office, he bent down so that we were at eye level.
He pulled an arm from behind his back and there was an orange lollipop in his hand. “Here you are, young lady.”
I took the candy and answered his cheery grin with a wan smile.
My “flu” soon became merciless. I became jaundiced and my frantic parents started contacting other doctors, trying to find someone who could see that what was happening to me was not normal. Of course, as this was in the 1970s telephones and good old-fashioned time-consuming mail were the only options; it was more easily said than done.
My symptoms got stranger over the next two years but Tara and shared the same excitement about starting first grade.
Blood started oozing out of my pores. Dad, Mom, and brother Cliff all worked to provide me with the most normal life possible. And despite the various pain, my body randomly acting of my control, and frequent doctor’s appointments, it never even occurred to me I was different—that I was not physically able, not intelligent, or not able to keep up with everyone else in the world.
I had yet to perceive any difference between myself and Tara—sure, I had to attend doctor’s appointments more often than she—but beyond that, I ran and played just like everyone else. That said, in the privacy of my home I noticed a sequence of changes in my body that did not seem to be shared by my friends. I had calcifications travelling throughout my body, attempting to find an exit. When I was seated, finding a comfortable position was tough due to the little white calcifications that grew in pressure areas like my elbows and knees. The calcifications created pressure and grew outward until the skin could no longer stand the strain and then they erupted chunks of calcium-laced liquid and blood. Each time it occurred, my mother changed the bandages and kept an eye out for opportunistic infections.
My 6-year-old brain was incapable of understanding the reasons behind those changes. But when I began school I came to the conclusion quickly that, in the eyes of my classmates, I was not normal. The recognition settled into my body, heart, and soul with a shock that was almost impossible to comprehend.
As these changes progressed, I wanted to hide it from everyone. The impact of the all–too-frequent hospitalizations also started to take shape. Experience had taught me that hospitals were big impersonal buildings with nurses, doctors, strange aromas, and beds that trapped patients inside. I grew uncertain as to the permanence of my home life each time I was admitted. And courtesy of the evening news, I also began to think of hospitals and ‘homes’ as a place where they sent the differently-abled when they had become too much of a burden to their families. These places looked like prisons and I vowed to be as good as I could so that my family would not have a reason to send me away.
I was a pre-teen before the medical profession figured out what was wrong with me. It turned out that I had a rare disease called dermatomyositis—my enemy now had a name.
The joint pain was invisible, and so the strain, burning, and weakness in my muscles went unnoticed by many. Only scars seemed to be proof of a battle I had fought and won. Yet despite the victories, I longed for the smooth elbows of my family and friends. I wished I could have just a single spot to lean on without having to worry about bleeding.
In order to begin tracking the progress of my disease, the doctors suggested a follow-up bone scan at the Cross Cancer Institute. Tests were a blur of discomfort; I learned to block the experiences from my brain. This reliable and less invasive test began with an injection of radio-active tracer, then drinking water and waiting. As I waited for the test to begin, my family set up themselves up in what would soon become familiar positions—Mom doing word scrambles, Dad watching the televisions in the lobby.
At one point, after spending thirteen weeks in various hospitals, my family was told to take me home—my case was terminal.
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