What Is Normal Anyway?

I've always wondered what normal is... I know plenty of people who say normal is overrated or who cares about what others think of you? But even hearing everyone is unique or phrases like 'none of us are normal' does not change the pain felt from being a bit different from your peers. My entire life I have been different. In preschool, I was diagnosed with food allergies these were managed for most of my life by my mom with such grace until the fourth grade. Food became my body's enemy. I began to have allergic reactions to foods we once thought to be safe. It was then I was diagnosed with more food allergies. Suddenly, my already limited diet was further restricted. Fast forward to eighth grade, I had a really hard year with bullying due to my food allergies, this was concurrent with the further decline of my health. By the time my freshman year of high school came around, my health was rapidly declining. On November 16th, 2012  I had an NG-tube placed because I could no longer safely consume food. This feeding tube allowed me to get special medical food that did not cause my body to go into allergic shock. This is often called an elemental diet. The tube went into my nose down my throat and into my stomach. Obviously this no permanent plan, but it worked for a while. Eventually, I was diagnosed with Mast Cell Activation Syndrome. We finally had an answer to why my body would react to food without warning. As we started treatment for the condition we tried to reintroduce food into my diet. It was a trial and error process that unfortunately was not working, so on January 31st, 2013 I had a surgical feeding tube placed into my abdomen.

Following my surgery, my life was starting to return to normal besides the fact that I was unable I crashed hard I mean it. Following another surgery, I had in May my entire digestive tract began to shutdown. By the time my sophomore year of high school came around my body could no longer handle the brutal attacks upon it. It was then when I was admitted to the hospital where I stayed for weeks as we had many difficult conversations with health care professionals about my future. At the time was a terrified fifteen-year-old who had to come to terms with so many adult-like situations, so fast. I was given many new diagnoses and I was placed on TPN (IV nutrition) which was my biggest fear of all. I will always be thankful my doctors understood and helped me through that because my situation has been completely different from my brother's TPN situation. I began to thrive! I was finally able to leave the hospital! This hospital stay made us push for an overall diagnosis that would explain why all of this is happening to me. Although my health had declined much more rapidly than my brother's had we began to see many similarities between his failing health in comparison to mine. My brother, Tyler had been diagnosed around May of 2011. Finally, in November of 2013, I too was diagnosed with Mitochondrial Disease. It's a progressive, genetic condition with absolutely no treatment or cure.

Since my diagnosis, my health has continued to decline. One organ system after another has become affected by this disease. I know I am not normal. I am different, yes but that doesn't make me any less of a human than you are. I have had to fight just to get some sense of normalcy in my life. I continue to be a huge advocate for teens with chronic illnesses and feeding tubes. Those who come after me still need a voice in this world where it is lacking. Most people don't know about Mitochondrial Disease and I don't want another sibling to feel how I have felt as they watch their sibling die while nobody cares enough to make sure that those with this disease will one day have a treatment instead of being sent home to die.

Originally published: July 3rd, 2014
Modified on: September 24th, 2019