The Gift

I was born with a neuromuscular condition that doctors didn’t really have a name for at the time, as well as hypotonia, which results in poor muscle tone, poor muscle coordination, slow reaction time and learning difficulties. I went through years of physical and occupational therapy, as well as adaptive physical education classes from elementary to high school. During this long period of time, I also battled insomnia that was so bad that I couldn’t stay asleep or even fall asleep in the first place.

Many of my classmates had no idea I had disabilities, since I had been in mainstream classes since the second grade. It wasn’t something I really talked about with them either. I always had trouble making friends, because I didn’t know what to talk about – and perhaps, because of my disabilities, I was more socially awkward than others. I never really had a best friend growing up and remember always feeling like I had missed out on a class in school on making friends. I didn’t know why everyone else seemed to have such an easy time. I tried hard to fit in and listened to some of the same music that my classmates did and was even in Girl Scouts with several of my classmates for five years until the troop disbanded.

Things finally began to improve for me socially in my later years of high school when I hung out with a few girls in my grade, but those friendships didn’t last long after high school was over. I didn’t have much luck socially in my first two years of college either, because I think by then, I was so desperate to have friends that I would become attached to people who took advantage of me and didn’t treat me the way I deserved to be treated.

What has helped me through the years has been the support of my parents, particularly my mom. My mom has been there for me during years of doctor appointments. She was around whenever I needed to talk and she worked at home, so she could be there for me and my siblings. We have always had a very close relationship, and she has done lots of research through the years to see what could be done to help me with my disabilities.

I have found writing to be a great way for me to cope with my social issues and other issues relating to my disabilities. I have been writing seriously since I was thirteen and attended a writing camp one summer at my local community college. I began with short stories but then expanded to novellas. During my high school and college years, writing became something that I turned to whenever I wanted to express myself and I loved those times when I was able to get deeply involved in my writing. The characters I created in my novellas are characters that I continue to work with today. I have conveyed my own feelings about life into these stories and have found it to be an outlet for me. I continue to work on my novellas as a way to unwind and to live vicariously through my characters.

I have found a new purpose recently for my writing through my work with the Turner Syndrome Foundation. When I first began working at the Turner Syndrome Foundation, I thought I was fairly well-educated on Turner Syndrome, a chromosomal abnormality that affects 1 in 2000 females in the United States. Now that I have begun writing articles about the experiences of individuals, I have begun to realize that I still have so much to learn. I have learned that although Turner Syndrome affects everyone in a unique way there are still many similarities in regards to the health issues these individuals are confronted with.

Through my interactions with patients, volunteers, and members of the board of trustees, I have seen first-hand that once you are diagnosed with Turner Syndrome, you find yourself embraced by a community of those who have already been living with it. You realize that you are not alone on your journey to find acceptance and understanding of your condition and that there are so many others walking the same path beside you. I can certainly empathize with those who find themselves on this journey as I too felt alone when I was first diagnosed with my condition. I am still searching for my own community of support that I can count on to help me through any issues I have with my condition.

Writing for the foundation has opened my eyes to the fact that Turner Syndrome and any other disability does not necessarily have to define your life. One woman I wrote about showed me that despite her limitations, her dancing is something that helps her transcend past her diagnosis and show through her movements her grace and elegance. I know that I will continue to learn more about others with Turner Syndrome and I look forward to seeing what insights I am able to obtain through reading about their experiences with the condition. It has helped shape my perspective on life with disabilities and inspired me to help others with disabilities through my writing. Writing continues to be one of my greatest strengths and if I can make a difference in someone’s life through writing about the life experiences of these individuals, I know I have achieved my goal in writing.

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“Cool Kids”

I heard this song back in April and I could instantly relate to it. When I was in high school and in my early years of college I was desperately trying to fit in not realizing that it was okay to just be myself and stand out. I didn’t choose my friends carefully. Now that I’m older I have started to accept myself more and not worry as much about fitting in with the crowd. I have met some great people in the last couple of years who like me for me and don’t want to try to change me into someone that I’m not.

Listen to the song here:

http://www.mtv.com/videos/echosmith/944110/cool-kids.jhtml

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Being Unique is a Beautiful Thing

Appreciate the fact that you are unique. Embrace what makes you special. “Be who you are and say what you feel, because those who mind don’t matter, and those who matter don’t mind.” –Bernard Baruch

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Sometimes What Isn’t Visible is the Hardest to Deal With

It is estimated that 10 percent of people in the U.S. have a medical condition that could be considered an “invisible disability.” These disabilities may range from sleep issues to problems as serious as diabetes and lupus. I am one of those 10 percent. I have struggled with invisible disabilities since the day I was born, and while some have improved with age, others will require much more time to improve.
I was born with a neuromuscular condition that doctors didn’t really have a name for at the time, as well as hypotonia, which results in poor muscle tone, poor muscle coordination, slow reaction time and learning difficulties. I went through years of physical and occupational therapy, as well as adaptive physical education classes from elementary to high school. During this long period of time, I also battled insomnia that was bad I couldn’t stay asleep or even fall asleep in the first place.
Many of my classmates had no idea I had disabilities, since I had been in mainstream classes since the second grade. It wasn’t something I really talked about with them either. I always had trouble making friends, because I didn’t know what to talk about – and perhaps, because of my disabilities, I was more socially awkward than others. I never really had a best friend growing up and remember always feeling like I had missed out on a class in school on making friends. I didn’t know why everyone else seemed to have such an easy time. I tried hard to fit in and listened to some of the same music that my classmates did and was even in Girl Scouts with several of my classmates for five years until the troop disbanded.
Things finally began to improve for me socially in my later years of high school when I hung out with a few girls in my grade, but those friendships didn’t last long after high school was over. I didn’t have much luck socially in my first two years of college either, because I think by then, I was so desperate to have friends that I would become attached to people who took advantage of me and didn’t treat me the way I deserved to be treated.
What has helped me through the years has been the support of my parents, particularly my mom. My mom has been there for me during years of doctor appointments. She was around whenever I needed to talk and she worked at home, so she could be there for me and my siblings. We have always had a very close relationship, and she has done lots of research through the years to see what could be done to help me with my disabilities.
One of the things she learned about was a condition called NLD. NLD, or nonverbal learning disability, is a learning disability which affects people’s abilities to interpret the facial expressions of others and can result in difficulties with visual and spatial cues. Those with NLD may have some social difficulties as a result of the condition. They also often have significant differences between their verbal IQ and performance IQ scores. She thought it seemed to describe me perfectly, and I was diagnosed with NLD after a neuropsychological evaluation which showed that my verbal IQ was significantly higher than my performance IQ. After being diagnosed with NLD, I have been able to find websites devoted to NLD and Facebook discussion groups where I can talk to people who may be facing the same problems that I have. I recently launched a Facebook page for individuals with NLD and their families to find support and resources. You can visit the page at http://www.facebook.com/theNLDExchange.
After my evaluation with the neuropsychologist, I began going to cognitive therapy for a few months to improve my visual coordination skills, scanning abilities and social skills. During this period of time, I also was seeing a psychologist because of my low self-esteem. My psychologist put me on hold in April 2010, because he thought I was doing better. I didn’t start seeing him again until last February, because I’d been having suicidal thoughts and was going through a period of depression.
Things have actually improved in some respects for me since February 2012 when I began seeing both a psychiatrist and a psychologist, as well as a new primary care physician. My psychiatrist diagnosed me with depression and an anxiety disorder and put me on an antidepressant and another medication to help me deal with my anxiety. One of the medications has actually allowed me to sleep through the night most of the time, which has helped me mentally and physically. My doctor had me go through several blood tests after my disabilities were described to him and one showed that I had hypoglycemia, while another gave me a name for my physical disability. I have a rare condition called partial trisomy 16, which results in poor muscle coordination and can result in learning disabilities. As a result of this diagnosis, I am now on a special diet with less carbohydrates and sugar and more protein.
I’m still very much a work in progress, but I’ve improved somewhat socially because my mom has helped me with my social interactions, and I’ve interacted with different people throughout my five years of working at Kohl’s on the sales floor. I even have coworkers I talk to regularly and have become friends with them online as well. I am working on finding more social groups and have met some interesting people through Special Olympics who I think I can maybe become friends with over time. I have been working on my everyday life skills like ironing and cooking, and with time I hope to become more independent and be able to fully take care of myself.

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Feelings Explode

You didn’t care as I crashed and I fell
Down to the ground
Like a rag doll in the wind
I crumbled apart
You didn’t care with the words that you said
How you made me feel
So now there’s a distance
That will never be crossed
As my feelings explode
And I will never forget
The words that you said
And I hope you remember
That I was worth it in the end
And you missed your chance
To truly get to see
Just what kind of person
I could turn out to be

 

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Whistling Past the Graveyard

Susan Crandall’s Whistling Past the Graveyard was a book I wanted to read just from looking at an online description of the book. It features a unique protagonist, a 10 year old girl named Starla Jane Claudelle, who was born to two teenage parents. All she wants is to see her family back together again since her mother left her and her dad when she was only three years old to try to become a famous country singer in Nashville.

In the beginning of the novel, Starla is 9 ½ years old and lives in Cayuga Springs, Alabama, with her maternal grandmother. Her father works out on the Gulf on the oil tankers. She doesn’t have the chance to see him too often. She feels that her grandmother hates her because of the way she is treated by her and how she keeps trying to change Starla into someone she doesn’t want to be. Starla is very much a tomboy and loves hanging out in her fort and spending time with her best friend, Patti Lynn.

She decided to run away on July 4 after she was grounded by her grandmother, Mamie, because she broke the nose of a boy who was picking on a five year old girl. She had then pushed the boy’s mother to the ground. On her way walking out of town, she was offered water by a black woman, Eula, who had a white baby boy in the backseat of her car. At first she refused but was so thirsty by then that she couldn’t say no.

Eula offered to take her to Nashville to find her mother. Along the way she found out more about Eula and how she ended up with the baby. They stopped at the home that Eula shared with her boyfriend, Wallace. He was an alcoholic who was very ill-tempered and yelled at her for bringing home the baby and Starla.

Starla learned that Eula was abused by Wallace and that Eula’s life had been a difficult one.  Eula, the baby, and Starla were finally able to escape from Wallace and continue on their journey to Nashville. Along the way they met a woman who was able to provide them with the bus tickets that they would need to get to Nashville.

It was only when they arrived in Nashville did Starla learn the truth about her family and on the way home with her father told him everything that had happened during her time away from home. She had truly grown as a person and learned just how pervasive segregation was in the South during the early 1960s. At times she was even ashamed to be white.

This novel truly opened my eyes to the racial inequalities that existed in the South during this period of time and in some ways continue still today. Starla is a memorable young girl who you feel you can relate to. Although some parts of the novel seemed implausible and at times the book was slow I still relished every moment spent reading this book.

I received a digital copy of this book from the publisher. It will be published on July 1, 2013.

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“Z”: An Extraordinary Woman’s Story

Z by Theresa Ann Fowler is the story of a woman who was quite remarkable for her time and whose marriage to one of the most famous writers in the literary canon has fascinated many over the years. Z is the story of Zelda Sayre’s life from her years growing up in Montgomery to the fateful meeting with a boy with “Irish Sea eyes” that changed the course of her life forever. Zelda was the daughter of an Alabama judge and had a great passion for dance. On the night of her last performance with her dance school she had her first glimpse of the man who would take her on a journey into a world she had never experienced before.

This man was Scott Fitzgerald, a lieutenant with the US Marine Corps, who was briefly stationed in Montgomery before heading off to France to fight in World War I. Zelda and Scott spent a few weeks together before he had to leave for France. Fortunately he never had to face battle and came back to Montgomery again to see her. He told her that he was a writer who had sent his novel to Scribner’s, a publishing house in New York, that was then one of the most prestigious publishing houses in America. Her father thought that he should enter into a profession that would provide him with a more stable livelihood than writing.

Scott proposed to her two years after they met in 1918 and in 1920 Zelda became known as Zelda Fitzgerald once they married in New York at St. Patrick’s Cathedral. Scott was now a newly famous writer who had finally had his first novel, This Side of Paradise, published by Scribner’s. He introduced her to some of his former classmates from Princeton and admirers of his work. She was so proud of his great accomplishment and enjoyed the parties and gatherings they went to together.

Things changed though when she became pregnant with her only child, a girl, who was named Frances Scott Fitzgerald and was nicknamed “Scottie” by Scott. At the time of Scottie’s birth, they were living in Paris and met other artists and writers. Zelda began dancing again and started to dabble in writing. Any story of hers that was published though had Scott’s name before hers because of his popularity as a writer.

This was to become one of the many issues that affected their relationship. Scott was very controlling and wanted her to focus more on managing the household. He drank heavily which dramatically affected their marriage.

Z was a book that took me into the life of a woman I had known little about before reading the book. Fowler’s Zelda was a woman who was very active and wanted to establish a name for herself. In a period of history when women were still very much subordinate to men, she tried to prove that she was as capable as her husband at achieving great things. This is a book I would highly recommend to anyone who loves reading about extraordinary women.

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