Consumer Involvement
I’m fighting an invisible monster. You can’t see it and I can’t see it either, but it’s real and I live with it every day. The monster is called Multiple Sclerosis (MS). MS isn’t a visitor. It decided to take up residence in my body and go on the attack. MS affects my life, but it doesn’t stop my life. It has altered the trajectory and changed many of my plans both personally and professionally. What it for sure has made me do is adjust how I serve.
I was in 3rd grade when I joined Girl Scouts. I was 14 years old when I became a junior volunteer at the community hospital. I was 17 years old when I enlisted in the Army Reserves. I was 41 years old when I served as an AmeriCorps volunteer. And, I was 43 when I was diagnosed with MS in 2014. When the doctor said he was pretty sure I had MS, I felt like the floor opened up and swallowed me whole. I felt a tightness in my chest, and for a few moments, I wasn’t able to think. I could barely breathe. When everyone was gone, and I was alone in my hospital room, I took a moment to cry, knowing that with that one pronouncement, my life would forever be changed. When I was diagnosed my son was already grown and gone from home, but my daughter was just 16 and still in high school. She witnessed the early stages of being forced to accept having an incurable disease, the struggle of learning which aspects of your life contribute to symptoms, what triggers a relapse, and ‒ one of the biggest ‒ how the depression can overtake even the strongest person. After my diagnosis I made it my mission in life to serve my MS community.
I’m currently involved with the National MS Society, Northern California Chapter. I captain a team for Walk MS and was selected as the 2017 ambassador for Walk. I serve on the California Government Relations Committee and the Activism Advisory Committee. I am a District Activist Leader and was chosen to represent California in Washington, D.C. at the 2020 Public Policy Conference. I’ve also participated in their national awareness campaign.
I am honored to be part of the effort to bring about change. This is an amazing group of people who come together from all over the country and from all walks of life with a singular purpose of wiping MS off the face of the planet. The components and activities that contribute to the overall mission are numerous, and there are many roles for people to play, but when we unite, we are a force to be reckoned with and we do great things.
When asked if I would mind being nominated to serve with the Multiple Sclerosis Research Program as a peer reviewer my immediate response was “I would love to serve.” Completing the application compelled me to acknowledge the things I had done that are important to me and to my community and it also left me curious about the particulars of the process.
As we prepared to start our work, we had orientation meetings that acclimated us to the process and ensured we had the knowledge and resources to best serve our function. Once we began our endeavor, I got to work one-on-one with a mentor. He helped me feel comfortable and I benefited greatly from his years of experience as a consumer reviewer.
The videos that explain each aspect were also helpful, but having the Zoom meeting and the mentor were the two resources that I found most helpful. It’s a lot of work. The applications are long and have a lot of scientific information. It seemed a little intimidating at first, but the best part of giving from the perspective of someone living with MS was seeing that the scientists took this into consideration as they made their scoring decisions. And remembering why we were there was motivating. We are there to represent the MS community and to give MS patients a voice in the discussions.
My experience showed me that the scientific community wants to find a cure and they are actively working to find one. However, in the meantime, they are working hard to develop therapies that can help people live better with the disease while we wait for the cure. They put in long hours and do the hard work that goes into every development and they keep us heading in the right direction.
When I’m not volunteering for the MS community I am a substitute teacher, sales coordinator for a wellness business coaching company, official for amateur mixed martial arts (MMA) in the State of California, and a Certified Health Coach focusing on women living with an autoimmune disease and those who need to improve their overall health. I also enjoy reading, spending time with my children, finding ways to serve at-risk youth, spending time in nature in the Yosemite National Park or horseback riding, and working in the MMA world (I know it’s work, but it’s too much fun to be considered all work). Plus, it gives me an opportunity to raise funds and awareness with my Fight For A Cure For MS program.
Being a Soldier and working in the MMA community have both taught me to fight. Now I fight for something else. I fight to live better. I fight to hold on to who I am as an individual. I also fight for a cure. I believe that regardless of where you’ve been or where you are, you can fight and together we will win.
Last updated Thursday, December 5, 2024