Like a small boat
On the ocean
Sending big waves
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion
And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?
This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me…
-Excerpt from “Fight Song”, by Rachel Platten
Like many people going through challenging circumstances, I think Fight Song speaks volumes to me. When she sings about the small boat in the middle of the ocean and how it surrounded by big waves, I imagine myself running through a burning forest. The faster I run, the faster the blaze catches up to me. The harder I push my body, the more likely it is rebel. But I can’t just stop living. I am much stronger than I think and I can create change if I set my mind to it (“I might only have one match, but I can make an explosion.”) The only way that I can get a cure for myself and all the CRPS survivors is to raise awareness. The RSD/CRPS community has to be loud about how much we want a cure. If we are loud enough, the rest of the world will hear and maybe this knowledge will reach the hands of an experienced researcher looking for a new challenge.
As people living with a chronic illnesses, we have learned that when people ask us how we are doing, they don’t actually mean it. They want us to say good and move on with our day. They don’t actually want to know how we doing. We are expected to keep all of our thoughts, feelings, and frustrations bottled up, until we can’t take it anymore and the psychological baggage manifests itself in a worsening of symptoms. I believe that this is an example of the line, “All the things I didn’t say, wrecking balls inside my brain” that she is referring to in her song. Everyone needs an outlet to turn to whether that be a family member/close friend, psychologist, or even a journal/blog. Anything to let us get rid of unnecessary stress. “I will scream them loud tonight, Can you hear my voice this time?”
Every day that we wake up and face the day, we are declaring our internal fight song. The courage to wake up and face the day and all the pain and challenges it will bring is commendable for people that have limited energy, even though we don’t have much of an option. Every day, I am fighting to regain complete control of my body. I have been told by doctors that I will left with severe pain and other problems for the rest of my life. So basically until a cure is found, I will be forced to find my way in my broken body. I am fighting every day to regain some sense of normalcy (Whatever that is. I have learned over the years that normalcy is overrated.). Still, this doesn’t stop my desire for a life that isn’t filled with issues. “This is my fight song, Take back my life song, Prove I’m alright song…”
“And I don’t really care if nobody else believes, ‘Cause I still got a lot of fight left in me.” One of the challenges with living with an “invisible illness” is that because it is not something that can be easily seen, doctors, nurses, family members, and friends may not believe that you are feeling as bad as you say you are. Therefore, patients are forced to be their own advocates, which is not always an easy thing to do. Many patients have to push very hard to order to receive the specialist care that they so desperately need. Chronic illnesses are just that, chronic. This is not a sprint, rather it is an ultra-marathon. While some will achieve complete remission and never have to worry about their illness returning, the vast majority are not so lucky.
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!