Searching for Normal
Author: Alison Neuman
Publisher: Fireside Publications
Pages:302
Genre: Memoir
Format: Paperback/Kindle
Book Description:
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.
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Excerpt from Searching for Normal: A Memoir
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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About the Author
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 nativeEdmonton ,
Alberta MacEwen
College
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
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
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
- Visit Alison Neuman’s website.
- Connect with Alison on Facebook and Twitter.
- Visit Alison’s blog.
- More books by Alison Neuman.
- Contact Alison.
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