Advocate Spotlight Update: Miranda Johnson
Miranda, a liposarcoma survivor, first shared her love for distance running in her March 2018 Advocate Spotlight by recounting the experiences of the late professional runner and founder of the Brave Like Gabe Foundation, Gabriele Grunewald.
I love distance running. I ran cross-country all throughout high school and college and it has connected me to so many incredible people. One of my role models is Gabriele Grunewald. She is a professional middle-distance runner and cancer has come back three times for her. First, she had adenoid cystic carcinoma (ACC). Then, she had thyroid cancer a year after her first diagnosis with ACC. Then, ACC came back two times after that. When I had my recurrence last summer, I remember coming across a post that she made on social media. In the picture, she was in a hospital gown, getting ready to go into surgery. In the caption, she wrote, “The pre-op mantra: Anything painful or uncomfortable happening during this hospital stay is not being done to me, it is being done for me – for my benefit. The only way out is through.” I remember being so humbled when I read that. I like to think that my love for distance running helped connect me to a role model when I needed it most in my life.
You can read more about Miranda’s original Advocate Spotlight here.
Update us a little bit!
Since I did the first Advocate Spotlight, I started working full time for CSC in the Affiliate Relations department. My role is Affiliate Data Coordinator and I support the needs of CSC’s network of affiliates and health care partners. CSC’s network of over 175 affiliates, health care partners, and satellite locations provides free services to those who have been impacted by cancer. Those free services include support groups, health and wellness classes, educational programs, exercise classes, and more.
I’m now 26 years old and living in Arlington, Virginia – in Crystal City specifically, or rather, “National Landing” (once Amazon’s second Headquarters arrives). I’m a huge Washington Nationals baseball fan and even attended Game 5 of the World Series with my aunt Delia this year (Go Nats!)! My younger sister, Caitlin, lives in L.A. and my parents and our two miniature poodles, Cody and Jack, live in Irvine, CA where I grew up. I majored in English and Art History at Gettysburg College in Gettysburg, Pennsylvania. I ran cross country there and regularly attend alumni runs.
Tell us about your advocacy experiences and involvement with CSC.
When I was 22 years old, I was diagnosed with a type of cancer called liposarcoma. Liposarcoma tumors start out in fat cells in soft tissue and the tumor that I had was in my left thigh. About a year later, I had a recurrence – also in my left thigh – and, after two very invasive surgeries, I chose to do radiation therapy as a preventative measure. A couple of weeks into treatment I attended a panel discussion at Kramerbooks & Afterwords in Dupont Circle called the “State of Cancer Research.” Elizabeth Franklin with the Cancer Support Community was one of the panelists. When I heard her talk about survivorship, I realized that I had never heard anyone talk about that in the context of cancer. It never even occurred to me that there were all of these resources to help people who had stepped into a new phase of their lives “post-cancer.”
Soon after that meeting, in January 2018, I became the Policy & Advocacy intern. During my time interning with the CPI, I contributed to blogs, conducted policy-related research, and drafted social media postings. I had the opportunity to attend all-day roundtables, meetings at the Rayburn House Office Building, and briefings on Capitol Hill. Since joining the Affiliate Relations team, I continue to participate in advocacy by helping to circulate CPI content online and with the affiliates. I have also supported CPI programs like the recent Utilization Management Summit, which was held in Washington, D.C.
Since becoming connected with CSC, I have realized the profound impact that my voice as a cancer survivor can have. I attend D.C. Young Adult Cancer Community meetups at the Smith Center for Healing and the Arts where I’ve met other young adult cancer survivors who are just like me. Meeting other AYA’s has made a world of difference in how I come to terms with having had cancer. As I mentioned in my previous advocate spotlight, being diagnosed with cancer as a young adult is entirely different from being diagnosed in your 60s or 70s. You have different priorities and concerns.
What is one tip or piece of advice you’d like to share with others who are interested in becoming an advocate?
I completely agree with what I said in 2018 and wouldn’t change a thing! You don’t need to be an expert in policy in order to advocate for something that you feel strongly about. Having a personal connection to an issue is part of what will make the work that you do resonate with so many people. I think the personal “human” connection is the most important part of advocacy. It’s what drives actual change.