I Fight Like a Girl

It is 2010. I am 13 years old, in 8th grade, and more uncomfortable with myself than I have ever been. This is something most girls deal with due to a number of things happening in their life; although, what I didn't know is that a wrench would be thrown in my process of growing up that would make it more difficult than I could have ever imagined.

Let's rewind. It is late April in 2010, I am in 7th grade, and I'm playing street hockey in gym class on a Thursday afternoon. One of my classmates continues to strike me in the foot with her plastic hockey stick, and a week later I discover I now have a stress fracture in my fifth metatarsal. I am a competitive dancer, and it is competition season, so I continue to practice and compete while gritting my teeth through the pain because it is in my heart and soul to do so. There is a break between my last competition and the dance recital when I get a bright green and hot pink cast on my leg, which I have removed early so I can dance in the recital. Regardless of the pain, I love every minute of it - in my heart, I know this will be the last time. I spend the first half of my summer in a big, ugly black boot, and the second half in a purple and orange cast which I begin my 8th-grade year wearing. By now, I should be "back to normal," and I am not even close.

It is October 27, 2010, and I have been in some form of a cast for five months. My mom takes me to a foot specialist an hour away upon request of my doctor at home in hopes of ending my pain for good. At 11 o'clock in the morning after spending almost an hour speaking with the specialist and getting simple tests done, he writes down "Complex Regional Pain Syndrome (CRPS)" on a slip of paper. I am 13 years old, and I am now officially diagnosed with a rare neurological disorder known as  Complex Regional Pain Syndrome (CRPS) aka Reflex Sympathetic Dystrophy (RSD).

At first, I thought this was great. I finally had an answer after months of having an unknown reason for a steadily intensifying pain. However, my happiness quickly turned to dismay as I start to learn the fact that CRPS does not have a cure, and instead, we can only pursue options that treat the symptoms of the condition. CRPS is essentially the misfiring of messages to the brain, and pain is created which is much stronger than that of the original injury. To put it in perspective; on the McGill Pain Scale, a broken bone is about a 10 – CRPS is a 46.

At this point, I can no longer walk, let alone dance, and the life I had known just a few months ago was now just a memory. Every day at school, my peers trip me in the hallway because I limp after a long day and scream names at me down the hallway. You see, when you are thirteen and have a condition other thirteen-year-olds haven't heard of, in their minds it does not exist. Therefore, in their minds, I am just seeking attention and I just want to get out of gym class, which they make very clear on a daily basis.

What they do not realize is I have had virtually everything I loved to do taken away from me. I cannot dance, play sports, play in the snow, I can't even use a pedal on the piano, let alone have any sense of carelessness because I must always be careful. During this time in my life, I have learned that no one wants to be friends with the girl who is in pain, and no one wants to be friends with the girl who is unable to do much of anything. 

Now, I feel like a medical guinea pig as I sit on the couch at home because a different doctor at a pain management center gave me a medication that had never been tested on children and I am sick because of it. My mom continues to be my rock as we consult with my physical therapist what route to take next. She does everything in her power to help me, and she keeps the most positive attitude she can in this situation. I try to be positive, but I am still confused. Why me? When will it be over? Will it ever be over?

Fast-forward through months of treatments and mistrials: it is May 2011, and I am now in my first remission. I am relieved. My pain has gone down drastically and my faith has been restored. Over the past few months I turned to music, and I now have a new passion which I will continue to pursue for the rest of my life. I am not healed – I may never be healed – but I am progressing, and I am finally changing my perspective.

Fast forward to today. It is 2019, I am 21 going on 22, and I have now had CRPS for a little over eight years. I have gone through a multitude of relapses and remissions, and I might continue that process for another week, or for the rest of my life. Either way, I know I will be okay because I have become a different person. When I was younger I absolutely resented the fact that I had this condition, I felt alone since no one else understood what I was going through, and because of this, I felt angry. But now? I am thankful.

I am only 21 years old and I have a deep appreciation for life that millions of people will never have until it is too late. I know what it means to be grateful for every step I take because I know how it feels to not have the privilege to take those steps and the fear that grips you at the idea of never being able to again. I have met some unbelievably incredible people that I wouldn't have met any other way, I was featured on a website called Fight Like a Girl Club when I was just 14 years old, and I experience life through an entirely different lens than the majority of my peers. I have been able to experience one of the greatest privileges in life: changing the lives of others. Truthfully, without having endured the battle CRPS has presented me, I would not be able to relate to others and inspire others in the ways I am able to today. I defied the odds when the odds were not in my favor, and I have grown into a person I know my five-year-old self would be proud of.

It is okay to be afraid of the battle in front of you, and it is okay to be frustrated for a while. More importantly, it is vital to remember you are stronger than you believe, you don't have to be fearless to win a battle, there will be people who try to knock you down, and there is a lesson to be learned in everything – everything can be turned into at least one positive thing, you can learn, and you can grow. 

I may not be "cured," but I have certainly won. A personal triumph is defined by you and you alone. No one else dictates your personal triumph, and I believe because I have learned and grown, I am the ultimate winner, not the disease. When you realize the very thing holding you back is the very thing that can be your launching pad, your life will change. Fight for it.