“My mission is to give hope to those affected by Complex Regional Pain Syndrome, raise awareness of CRPS among all people, and support research and treatment opportunities through events and fundraising.”
-Miller Kerr, Founder of Burning Hope
I have been dealing with the pain since I was 10 years old when I was diagnosed with Complex Regional Pain Syndrome (CRPS).
It was crippling, debilitating, and emotionally taxing. It was so bad that I spent six weeks at the Cleveland Clinic when I was 11, learning to walk again.
As we were leaving the Cleveland Clinic, we were advised not to talk about CRPS, and not to give pain a place in my life. They believed that doing so would lessen the focus and time spent on pain, therefore, minimizing the pain.
Even though the Cleveland Clinic did not intend this, it resulted in me feeling alone and living in the shadows. I had no one to talk to about my feelings or the pain I was in on almost a daily basis. I only had my pillow and my tears.
Friends and family did not know how to react to my pain. It made them feel uncomfortable.
Some knew of my journey, others did not. But no one knew what I had gone through to walk again and gain the strength to cope and manage my pain. They simply could not understand.
A couple of months after leaving the Cleveland Clinic, I noticed the pain had traveled to my left leg, an unfortunately common symptom of CRPS. Physical activity was important when living with CRPS, so I joined a dance class. This one-hour dance class not only helped me rehabilitate my legs, but it gave me a place to escape from the physical and emotional pain I endured everyday. To this day, dance is a way for me to express my pain and feelings through my movement and gives me hope for my future.
When I began dancing and joined the competitive world of drill team, I decided not to tell people about my disease. I feared they would view me as weak and incapable of being a leader. But dancing was my outlet and my joy. It is where I find myself and mentally escape the struggles of living with a chronic illness.
Dance continues to push me even on my most painful days, and I did not want anyone to take that away from me. I knew people would question, ‘How can you dance when you say you are in incredible pain?’
These fears stayed with me as I decided to try out for the legendary Kilgore College Rangerettes. Questions and worries continued to grow and fill my mind.
What if I could not keep up with everyone else? How are my legs going to react to all the dancing and kicking?
I tried out, and I made it! I was a World-Famous Kilgore Rangerette!
As my mom and I filled out my medical forms for the team, I wanted to be honest, so for the first time ever, I wrote down my medical issue, Complex Regional Pain Syndrome. This was my first step to being honest and telling my story.
Once football season started, I felt the pain getting worse and worse over time. Part of me felt that if I could just share my story, I might get some relief, if not from the pain, at least from the mental torment of keeping everything bottled up inside. I knew I could no longer keep my pain a secret, so I told the directors about my condition.
Once again, I was surprised by the support and willingness of my class to learn about what I go through on a daily basis. Their support gave me the courage to post my story on Instagram and begin advocating for CRPS.
My Kilgore Rangerette teammates will never know the freedom and courage they gave me by listening to and supporting me.
With this newfound support, I wanted to make a real change in the CRPS community.
I decided to start advocating and raising awareness for this disease to bring hope to those living with CRPS. Today, CRPS is a topic I can talk about with others.
In April, we have a 3K walk, Walk Strong, to raise money for RSDSA, Reflex Sympathetic Dystrophy Support Association which supports CRPS research and treatment options.
In November, CRPS Awareness Month, we do The Blanket Project. Drawing together hundreds of people to make blankets for hundreds of children suffering from pain-inflicting diseases at various hospitals around the country.
It is through projects like these that Burning Hope is able to meet its mission to Create Hope, Raise Awareness, and Support those affected by CRPS.
I look forward to continuing to host events like these to help and impact the CRPS community.