In 1998, Karlain Blancq (my mom) suffered a workplace injury. That injury ultimately led to the diagnosis of Reflex Sympathetic Dystrophy (RSD) – also known as Complex Regional Pain Syndrome (CRPS) – in my mom’s right foot, leg and hip. RSD is a neuropathic chronic pain condition that is often precipitated by an injury or surgery and is frequently characterized by burning pain. Pathologically, the wound or injury may heal, but the brain continues to send signals of pain. There is no cure for RSD and treatments are hit and miss.
Mom’s injury and subsequent RSD diagnosis also led to a 10 year worker’s compensation case. In 2002, due to issues with worker’s compensation, mom moved into my home. Up until that point and in the years that followed, I simply thought that the problem would resolve itself. I figured mom would see whatever doctors were necessary to make the problem go away. I never bothered to learn much about RSD and I certainly did not get too involved in mom’s care or treatment. I figured I was doing my part by putting a roof over her head and helping her with food and bills. It allowed for a certain detachment so that I could continue to live my life my way. This was definitely not how I envisioned living once I had left my mother’s home after high school. I figured that at some point later in life, as mom got older, I would have to take care of her then. I just never figured it would be this soon.
In 2006, I started participating in a curriculum put on by Landmark Education. The curriculum helped me to start realizing that things are just what they are. Without necessarily being good or bad, things just happen as they do. I started to see that mom’s RSD was not a bad thing. It was just something that happened. It was not something to struggle with or survive. I started to create a more powerful context with which to deal with mom’s RSD and how it would affect my life.
In 2007, as part of the Landmark curriculum, I took a class wherein I was to create a project for a community of which I was a part. I chose the community of family and, most specifically, my mom and her RSD. I remember going home and asking mom, “If I were to create a project around your RSD, what would you like it to be?” I envisioned responses like “a bake sale” or “a car wash.” I had it that mom would choose something that would raise money for her to help pay bills. However, mom surprised me a bit. She said, “We need awareness. Your project should help raise awareness of RSD.” The simple fact is that not many people know what RSD is. That includes doctors, worker’s compensation lawyers, and the public-at-large. Nobody understands anything about chronic pain conditions like RSD because they are not visible. Sure, there is sometimes skin discoloration and tissue swelling that accompanies the pain. But, people simply can not fathom such an intolerable pain that does not appear to have an identifiable cause. As such, RSD patients are often thought to have mental issues, hormone issues, or are thought of as drug-seekers.
So, I started thinking of ways that I could raise awareness of RSD. I also wanted to raise money for research, treatment, and education. I came up with the idea to have a 5K run. I had run in a few 5K runs and thought, “I can do this.” So I embarked on my journey to create the run. I had two choices: create my own non- profit and have control over where the funds go or team up with an existing non- profit, but give up administrative control. Oddly enough, the goal for our Landmark project was to create a project for our community, then give it to them. So, it made all kinds of sense to just find a non-profit to team up with to create this run. Not only would it serve my project goals, but an existing non-profit organization would already have a name and reputation.
I started looking at the non-profits involved with RSD. Lucky for me, an organization called For Grace was in downtown Los Angeles where I worked. The founder of For Grace, Cynthia Toussaint, was living with RSD. She and her partner, John Garrett, agreed to meet with mom and me. Cynthia and John put me in touch with Dr. Steven Richeimer, one of the For Grace board members and the Chief of the Division of Pain Medicine at the Keck School of Medicine of the University of Southern California.
From the very first correspondence I had with Dr. Richeimer, he was very supportive of my idea to have a 5K run. My intent was to have the 5K run benefit the USC Pain Center. He loved the idea. He arranged a meeting between himself, me, and Joyce Mayne, who represented the university. At that meeting, Dr. Richeimer asked something to the effect of, “We plan on doing this every year, right?” The idea and our team just grew from there. After getting the approval from the powers that be at USC, our run was born. Our goal was to raise money for the USC Pain Center and to raise specific awareness of RSD.
We continue to have very successful runs. The number of people who participate in our run grows every year. We have raised money every year which all goes to the USC Pain Center. We have gotten glowing reviews about our efforts from those that have provided us feedback. Our momentum is growing little by little. The journey continues.
I must say that the entire process has been very empowering. I went from burying my head in the sand with regards to mom’s RSD to being called a “hero” and an “angel” for taking on this fight despite not having the condition. I don’t feel like a hero or an angel. I feel that I am just doing a little something to make a small difference. But, those descriptions don’t arise out of my perspective. They arise out of the perspective of others. If that is how I occur for those people, then I humbly acknowledge and accept the accolades. Who am I to say what it is true for somebody else? I simply carry on with my effort to quench the fire of those in pain.