Aug. 09, 2018

Walking to Honor a Loved One

Elsa Rivera has spent her life trying to understand the mystery that is lupus. Her mother, Norma Guzman, was diagnosed two years prior to having Elsa; in 2015, she passed away from liver and kidney failure – a direct result of lupus. 

Growing up, Elsa witnessed her mother struggle to participate in every day routines; whether it was her inability to hold a steady job due to illness or to partake in simple pleasures such as enjoying time outside on a sunny day. At the same time, Elsa discovered the extent of her mother’s perseverance as she took on part-time babysitting, volunteered at Elsa’s school, and raised Elsa and her three siblings. During this time, Elsa remembers feeling frustrated because she did not fully understand what it meant to have the disease beyond her mother being tired and sick “all the time.” When Elsa was 18, her mother’s health took a turn and she asked Elsa to become her proxy.

“When my mom asked me to become her proxy, that was when I knew things were getting worse and it was a really serious situation,” said Elsa. “I felt like I really had to start paying attention to what was going on and educate myself about lupus. I had to learn about her [Norma’s] medication and really get involved with her health team.”

As proxy, Elsa would coordinate her mother’s numerous doctors’ appointments. She alternated attendance with her family and ensured they all maintained a shared a journal to track their mother’s health related information. All the while, Elsa was working and going to school full time.

The year that her mother died, Elsa and her family started Team Norma Strong and attended their first Walk to End Lupus Now® event. 

Elsa recalls, “Seeing all of the purple and the people, I was so overwhelmed and emotional. I really had no idea, until then, how many people suffered with lupus or had a loved one who was a lupus warrior. For so long, it was just my mom and my family. But at the event, I felt an immediate connection with others.”

Elsa and her family have since participated in the Walk to End Lupus Now® Boston on Team Norma Strong for three years. The Walk has allowed Elsa to share her and her mother’s experience to help others feel less alone in the process.

Be Powerful this Fall and sign up for a Walk to End Lupus Now® event in your area.