Monday, March 3, 2014

Who am I?

Before diving into themes, I wanted to give some chronological context so that you are able to follow along. 

So, I guess I will start from the beginning.  I was diagnosed with a double spinal curvature in the summer of 2000.  This was the summer between 5th and 6th grade. I will never forget the cold blue silence that my parents and I experienced when the doctor we had just met for the first time told me I would have to wear a back brace for years, in order to try and curb surgery.  At the age of 11, I was terrified and convinced that my life was over.  I was entering middle school in just a few short weeks and would be meeting hundreds of new people - people who I was afraid would see me simply as a geek in a brace.  Many people did see me that way, but I new I had no other choice to smile and try to find the place where I belonged.

At the age of 11, bracing was the only viable option.  The top curve measured 20 degrees and the bottom measured 19 degrees.  By the time I was fitted for my first brace a month later, the curves had already progressed to 23 and 21 degrees. I had not hit puberty yet, so I grew quickly and would have to be fitted for 4 more braces throughout the years leading up to surgery.

I lived in those braces day and night and had accepted them as a fact of life.  People could make fun of me all they wanted, but I refused to be in a state of perpetual depression.  By the time I was a freshman in high school (fall 2003), my curves had gotten so bad that the doctor started talking to us about surgery.  I was adamantly against surgery, but  in the spring of 2004, the curves were at 41 and 39 degrees.  They were increasing rapidly and my doctor was afraid of my spine crushing my vital organs. 

Therefore, in the summer of 2004, my parents and I made the tough decision to schedule surgery for October 10, 2004.  My doctor told me that since surgery was now inevitable, I could live the summer without a back brace.  The idea sounded great and I was excited to not live in a perpetual state of summer sweat, but I did not leave the brace off as often as I could have because of the pain it caused me when I was without it.  By the time surgery rolled around a few months later, my curves had progressed to 61 degrees on top and 59 degrees on bottom.

My surgery involved two metal rods, tons of hooks/screws as well as 2 hip bone graphs.  I missed six weeks of my sophomore year and returned to school with an even more hideous brace and awesome sweat suits.  I was out of my final brace towards the end of my sophomore year, but I still struggled with some pain for the rest of high school.

Since I had my surgery so young, I have had surgery on other body parts because they could not make my spine completely straight.  Therefore, my body has been thrown out of whack.  In addition to my back surgery, I have had two ankle surgeries and one shoulder surgery.  Each time I questioned "why  me?" but God always answered with compassion and love. 

Each cut and scar has made me unique and I wouldn't change anything about my life.  These surgeries and pain have taught me to be strong in Him.  So now, I am sharing my journey so that you can find that same hope.  Enjoy!

The Positive Fifty Percent

I've never shared my fifteen year journey with scoliosis outside of the realm of my family and friends, but when I went to an appointment on Friday, February 28th for lower back pain, I realized that I needed to share my struggle and journey with others so that they too can be part of the positive fifty percent.

The positive fifty percent I am referring to is an inverse of a statistic my doctor cited on Friday.  He told me that 50% of people diagnosed with juvenile idiopathic scoliosis that have a 60 degree or greater curve do not survive past the age of 20.  This statistic blew my mind.  He told me that the two main causes for death were: 1) not getting it treated quickly enough, so the spine would squish and destroy vital organs 2) suicide because of the pain and torment people with scoliosis endure.  

The doctor told me I was lucky to be part of the 50% that made it past the age of 20.  However, I knew that I was not lucky; I was incredibly blessed.  Since I was diagnosed with scoliosis in 2000, not a single day has gone by without even a little bit of pain. Additionally, I was tormented in middle school and high school because of my brace and awkward posture.  My classmates would grab the back of my brace and slam me into lockers, while their friends walked by chuckling.  Although I was often upset, I never got to the point of such utter despair that I felt like taking my own life.  God was with me at every turn, and continues to be as I deal with many side effects of scoliosis and spinal surgery.

As a write this blog, I will be writing in themes, so if you have any questions clarifying the time frame of my story, please feel free to ask.  I hope that by sharing my 15 year struggle and journey, you will find the hope and joy of continuing on as part of the positive 50 percent.