On August 28th, 2022, Phylicia, co-captain of Team JMJ, passed away shortly after she was admitted to the hospital for pneumonia. When I heard the news, I was in total disbelief. Phylicia was only 37 yrs old. Every time I saw her, she was always full of energy and the picture of health. She never mentioned any lupus symptoms. Her family joined the lupus walk in 2011 because their oldest daughter, Jervonya had passed away from lupus. It absolutely breaks my heart to see such a wonderful family lose two daughters at their prime. However, there is some consolation at the end of it all. At Phylicia’s celebration of life, we learned that her life might have been short, but it was clear that she was well loved and lived a full life with purpose.
The news of Phylicia’s death was too close to home. It can happen to any of us. But as someone with lupus, it was especially jarring.
I thought getting shingles during my sabbatical and having a lupus flare after getting COVID-19 was a rude awakening that I’m not as healthy as I thought. The sudden death of Phylicia, my aunt, a friend’s dad and a neighbor’s son within one month really caused me to reflect. If I were to die tomorrow, would I be fulfilled with how my life went? What kind of legacy would I leave?
I’ve always been a person who tackles challenges head on. Living with lupus for over 30 yrs has not been easy, but I’m proud of how far I’ve come. Every year that I’m able to live the life I want means a year more that I’m beating lupus. The first time I was asked to speak about lupus from a patient’s perspective, I actually refused. My company had a drug for lupus in the clinic. The project manager asked me to speak to the team to give them a perspective on living with lupus. At the time I was just starting out in my career and I feared the stigma that would come from having lupus.
After I felt more established in my career, I started to share my story to help raise awareness and to help other lupus patients feel like they are not alone. Years later, I finally understood the power of speaking out about lupus. Personally, it wasn’t until I started sharing my story that I began to heal emotionally. At one of the events, a parent came up to thank me after I spoke. Her daughter was just diagnosed with lupus and hearing my story gave her hope because 30 yrs later, I am still here.
I am nowhere near fulfilled with my life. I still have a lot that I want to accomplish. There are still many places that I haven’t visited and experiences that I haven’t had. I want to hike the highest mountains and grow old with my partner. I want to watch my nephews start their own family and help guide the children of our future. I want to be part of the team that gets a lupus drug to approval. As long as there are patients, there’s more I can do.
We need your support. I hope you will support the Lupus Foundation of America once again so we can finally find a cure for this disease.
This year’s walk will be in honor of Phylicia. She will be remembered for her tireless efforts to advocate for lupus patients and to raise funds to find a cure. Team JMJ and Genentrotters were always neck to neck on the leader’s board in the past several years. I wanted to end this year’s blog with a memory of Phylicia. One year, Team JMJ was several thousands of dollars above any other team going into the walk. On the morning of the walk, Genentrotters received a large donation that put us top on the leader’s board. Phylica came to me after the walk and asked me “what happened!” She then said “We will get you next year!” She delivered it with a warm smile but I knew she meant it! I later found out, she is known to her family, friends, and coworkers for her quotes. My favorite two are “A strong woman looks a challenge in the eye and gives it a wink.” and “Go the extra mile, It’s never crowded.”