The portion below was written by someone who I personally think is very brave. Her name is Emalie Shaffer and she’s a CRPS warrior. Emalie has the same condition that I do, but she’s been dealing with it for much longer than I have and also, she is much younger than I am. She’s been through a lot but her attitude is inspiring. And I just wanted to highlight what she’s written, so if you have the time, please read. Thank you.
I Fight Like A Girl
You have the power to create your own life and your own reality — fight for it.
By Emalie Shaffer – April 6th, 2016
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; 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.
Rewind. It is late April in 2010, I am in 7th grade, and I’m playing street hockey in gym class. My classmate strikes me in the foot, 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. I continue to practice and compete because it is in my heart and soul to do so. There is a break between my last competition and the dance recital, I get a bright green and hot pink cast on my leg, which I get removed early so I can dance in the recital. Regardless of the pain, I love every minute of it. 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.
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 Reflex Sympathetic Dystrophy (RSD) aka Complex Regional Pain Syndrome (CRPS).
At first, I thought this was great. I finally had an answer after months of having an unknown reason for a steadily intensifying pain. I quickly learn the fact that RSD does not have a cure, and instead we can only pursue options that treat the symptoms of the condition. RSD is essentially the misfiring of messages to the brain, and a 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 – RSD is a 46.
I can no longer dance, let alone walk, and the life I had known just a few months ago was now just a memory. I go to school where my classmates trip me in the hallway because I limp after a long day and scream 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 pedal on the piano, or have any sense of carelessness because I must always be careful. I now have one friend at school (who has become another sister to me), because I have learned that no one wants to be friends with the girl who can’t do much of anything.
I now 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?
It is May 2011, and I am now in my first remission. I am relieved. My pain has gone down drastically and my faith in myself 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. It is 2016, I am 18 going on 19, and I have now had RSD for a little over five 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. See, 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 18 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 like a “normal person.” I have met some seriously 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 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 little bit. 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.