I Used to Hate the Color Green. Here’s Why I Don’t Anymore.
I used to hate the color green. As a child my favorite color was always blue and purple. To be honest, I thought green was an ugly color. My mind quickly changed when my brother was diagnosed with mitochondrial disease. The color green became a symbol. Green is the color of the awareness ribbon for mitochondrial disease.
On April 16, 2011 my life changed in one short moment, and nothing has ever been the same since. There are some memories that are etched into your brain like an Etch-A-Sketch. However, you are unable to erase them. You can’t just shake the memories out of your brain and hope that the page will be cleared away. No matter how hard I try, I can’t get April 16, 2011 out of my head. That day will always be written down as the worst day of my life.
On that spring Saturday, my youngest brother, Tyler, had a seizure in my arms. I was only 11. I remember screaming for
help, thinking this was all my fault. The worst part was seeing my 9-year-old brother, Brycen, see his brother being carried out the door seizing. Brycen had never seen Tyler’s first seizure, so this was all new for him. He didn’t handle it well, but I could say the same for myself, even though I’d seen it before. We both collapsed to the floor. All he did was scream, and all I did was cry. We were all alone. We laid there on the floor for what seemed like hours. I could hardly console him, much less myself. We didn’t know if our brother would survive the night.
Tyler did make it, but he was unconscious laying in a bed in the Pediatric Intensive Care Unit when we saw him again. His little 5-year-old body received a beating. He’d turned blue within minutes of my parents rushing him out of the house. We didn’t call an ambulance because last time it took well over an hour for one to reach our house. Tyler didn’t have that time. He spent over two hours seizing that night and the next 24 hours unconscious, but he pulled through without any lasting effects.
The next week Tyler was diagnosed with mitochondrial disease. Mitochondrial disease is a degenerative genetic disorder with no cure. I cried. Our family had known a little boy with this disease. His name was Zach and he was only 3, but he was so sick. He
passed away two months after my brother was diagnosed.
From that day forward Tyler became my best friend. I set out to find a cure to save him, but little did anyone know, I would need that cure for myself as well. My life would never be the same.
It happened so fast, and I lost all control. The perfect happy life I once had no longer existed. It was like my life was sucked up into a tornado, spit back out again and shattered into a million and one pieces.
The first time I became sick I had to stop eating all food. Yes, all food! Imagine living a life without Halloween candy, Christmas cookies, Easter eggs and even your own birthday cake! I received a feeding tube. I got better; I was so thankful. I thought maybe this was it. I knew I could manage this. It was not even close to compare to what my brother goes through every day, I reasoned. I was OK. I found my new normal, although life was anything but normal.
Nine months after I put my life back together, it shattered again. The catch was this time it would be so much worse. My feeding tube was no longer working. Everyone told me this would never happen. I cried and cried. The strain mentally was almost as bad as it was physically. I knew what all this meant. I already knew what I would soon be facing because I’ve seen my brother face this fight. I think that was the worst part — knowing what was before me. That little 15-year-old me was so scared.
Just a few months later, I had a pediatric specialist tell me I would never get better, and even if I did I would still be very sick and rely on tubes to keep me alive. How can doctors tell a person there’s nothing they can do to make things OK again?
Like dominos, my organs have started to fall down and fail one by one. Organs failing right in front of your eyes and there’s nothing you can do about it. No treatment. No radiation. No chance of remission. No surgery. No magic pill. And worst of all no cure.
So here I am two years later still breathing, still living and still fighting. I’ve rebuilt my life to the best of my abilities. I’m still out there living my life just as any other person would because, just like you, I don’t know what tomorrow will bring. Maybe not today
but five years from now the doctors will be able to find a cure.
I’ve been able to bring awareness about this disease on an international level. When I set out to find a cure to save my brother I never expected I would have all these opportunities available to help me do so. I’m still out there searching and fighting for a cure. It’s not only about my brother anymore. It’s about that child who is born every 30 minutes who will develop mitochondrial disease by age 10, the child who lost their sister or brother to the disease, the parents who are struggling to find a diagnosis for their child, the mom who is unable to take care of her four children because she is too ill, the teenager who is fighting to make it
through high school despite their illness, and anyone who is still pursuing their dreams even though their body is failing them.
The color green isn’t so bad anymore. It is now one of my favorite colors (next to blue, of course). Mitochondrial disease has
become a blessing and a curse. Without mitochondrial disease I would have never had some of these amazing experiences I’ve been gifted with, but it’s also a curse as I see my body slowly shut down on me. My life may not have a happy ending, but it’s not about the happy ending.
It’s about the story, and if you ask me I think it’s a damn good story.
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