Having this blog has been one of the best decisions I've made in my life. I am very thankful for the person who encouraged me to pursue this avenue because I realize I have a story to tell. When I started my blog I didn't share the link with too many people. Only a handful of people, even knew the blog existed in the first place. I don't think my parents had the link for a while! For about a year and a half I kept like this, until one day I slowly started posting links onto Facebook. I shared a post that picked up quite a bit of attention, because of that, I allowed myself to become more vulnerable when it came to uncovering the truths I've kept secret.
I was only eleven when all of my health issues became increasingly prominent in my life. For the longest time we couldn't figure out what was wrong with me. By the time of my freshman year rolled around I had a feeding tube shoved up my nose. During my sophomore year, my entire digestive tract had shutdown and became clinically diagnosed with Mitochondrial Disease. My life was completely altered and everything I had shattered into a million and one pieces. Like a puzzle I had to learn how to pick up the pieces and put everything I had back together. As I began to put my life back in order, I also began to write more frequently. When I read those words I once wrote shows me how quickly I had to grow up. I had to make a decision as to, whether or not I was going to let the life I must live defeat me.
As you can tell I decided that the life that was forced upon me was something I could overcome. It took some time but I have found my happy place in writing. I'm no longer that scared fourteen year old girl anymore. Some how I found a voice even when I couldn't find the words to speak about how I felt. The essay I have written for the scholarship is down below. It took me a while but I found a way to share with the world that my life has taken so many twists and turns, and how I was able to grow out of my situation.
Essay below:
I have never been able to fully
comprehend why my body has chosen to stage a civil war. It has become an uphill
battle in a war I will never be able to win. How can anyone win a war against
his or her own body? When the war first started I was a scared fourteen-year-old
little girl who went from a life of high school, soccer, and friends to a life
of surgeries, pills, and doctors. Almost four years ago the fight for my life
began and this fight has changed me in more ways than I could have ever
imagined. My body might be growing weaker but this passion for advocacy and
awareness is only growing stronger.
My health declined in my freshman
year of high school and I had a feeding tube placed because my body was no
longer able to tolerate the food I ate. Imagine not being able to eat
Thanksgiving dinner or even your own birthday cake… During this time I
struggled greatly as I adapted to my new lifestyle. I was shy about my disease mainly
because I felt that if nobody talked about it then maybe I could pretend like
it didn’t even exist. It worked for a little while and I felt normal but as my
health progressed things were no longer as easy to hide as they used to be.
The doctors didn’t believe my
condition would progress as it did with my brother, but it did. The war raged
on in my body and it was time for another battle. For months I struggled both
physically and emotionally. I was diagnosed with Mitochondrial Disease like my
brother. Mitochondrial Disease is a degenerative condition that has no
treatment or cure. I became scared thinking about the struggles my brother
faces, knowing I too would be following that same line. This wasn’t supposed to
happen.
Prior to my diagnosis I spent many
hours volunteering for a cure to save my brother, but it became different when
it was myself. It became more personal, so I chose to become a voice for
teenagers with chronic illnesses. I know what life is like for sick teenagers
and when I noticed there wasn’t anyone who was speaking out on our behalf, I
wanted to be that person.
I started a blog
(ChronicallyAwesome23.blogspot.com) to share my story during ninth grade. With
this blog my friends began to understand the daily challenges of my life. At
this time I also began speaking engagements, lobbied at the State House, and started
spending time connecting with others teens like myself.
Shortly thereafter in March of 2015,
a post I had written for a special needs forum changed my life, when Huffington
Post contacted me to be featured on their website. Since then I’ve written
eight pieces for their website and have connected with other newspapers both
international and domestic.
When I first got sick I was closed
off, but I’ve learned to be open and outgoing, as I’ve become comfortable with
my illness. I want to continue my work with my advocacy efforts and hope to
pursue my passion for a career in journalism to continue to share the stories
of others and myself. If you asked me today who I was in ninth grade I don’t
think I would be able to recognize myself. These last four years have changed
me for the greater good and I couldn’t be any more proud of the person I have
become.
