It Ain't Easy Being Me: Growing Up With A Rare Disease Called Spinocerebellar Ataxia Type 14 (SCA 14)
Author: Christopher John DeHaven
Format: Kindle Edition
Have you ever stopped to think about all the Diseases and Illnesses in the World?
Now, take a guess at how many Diseases and Unknown Illnesses there might be in the World.
Can’t do it, right?
DON’T WORRY, NEITHER CAN I!
If you have ever had a Disease or Illness you know that you need to have at least five things in your favor: GOD in your corner, a sense of humor, thick skin, a great Doctor plus the support of family and friends if you ever plan on fighting your problem.
Now, what kind of person are you? I’m the type of person that likes to stand out in a room filled of People who have Disabilities. I’m not afraid to “make waves” (make a scene) around others just to accommodate someone.
If you ask me I will speak-up and you might not like what I’m going to say but that’s your problem, not mine!
Well, by writing this short story I hope that you will learn not to assume anything about anyone because everyone has problems that make people “Jump” to conclusions or assume the “Worst” in someone.
We all have done it! It is just Human Nature and it starts when we are children and as we grow-up by Bullies or even by the people we trust the most, our PARENTS.
This is the story of my life growing up and living with a Very Rare form of Ataxia. I hope that it helps now and even Future Generations by opening the eyes of Parents and even Teachers around the World so they start noticing, talking to and really listening to their kids and children in schools before assuming something is wrong. If I only knew when I was younger that my life would turn out this way I would not have attended School to receive my Degree in Photography and maybe even dropped out of High School to work as much as possible so I could build up my SSDI (Social Security Disability Income).
In this short story I reflect back on many things in my life, some good, bad, crazy and even those “What was I thinking?” moments. I say exactly how I feel about life and I share the “Power of our Mind” as my body starts to break down I begin losing some senses but others are heighten by sharing 2 short stories that I truly believe happened but I have been told otherwise.
Most of the public thinks that we (people with disabilities) just get in the way or disturb their lives but I’m here to tell them all to:
“GET OUT OF OUR WAY!”
50% from the sale of each book will go to two Charities.
30% will be donated to the National Ataxia Foundation to help in finding treatment, doing research on Ataxia and even finding a cure one day.
The other 20% will go to the MDA Clinic in Oklahoma City for their in help. I would like to help with the cost of sending kids to camp each year.
90% of all funds made from TV, Movies or other means will go to these Charities, 45%/45%
And the other 10% will be going to the Blanchard High School Alumni Association.
My goal is to present them with a check at the NAF Annual Meeting in Denver, CO each year, during my Yearly Check-up at the MDA Clinic and a check at the Classes Reunion in Blanchard.
To learn more about all the Diseases Associated with Ataxia please go to the National Ataxia Foundation Web Site at www.ataxia.org or you can Email: [email protected] - You can also reach me on
Facebook at www.facebook/christopherdehaven1971 to ask questions or talk about the book.
Thank you for your help