Kevin A. Roberts
Amy Rivera didn’t want to wake up. She spent decades feeling like this, opening her eyes each morning and wishing she could descend back into fantasy. In her dreams, Rivera wore what she wanted and saw herself thriving. Then she’d wake and confront her reality.
Born with primary lymphedema, a disease that causes tissue swelling in extremities due to an accumulation of fluid, Rivera, now 40, spent much of her life with a right leg that was 200 percent larger than her left leg. She was bullied and teased. She was also misdiagnosed for more than 30 years—it wasn’t until 2013 that doctors were finally able to put a name to her condition. That year, Rivera underwent the first in a series of surgeries that reduced the circumference of her leg and eventually removed 35 pounds of trapped fluid.
Although there is no cure for lymphedema, multiple procedures and daily maintenance give Rivera control over the disease. Fluid retention still causes the size of her right leg to fluctuate, but it typically stays under 3 percent larger than the other one.
“It’s taken me from 2013 to now just to have a quality of life that I knew in my heart I could have,” she says.
With it, Rivera has found the active lifestyle she’d always wanted. She goes to the gym at least five days a week, hikes local trails, and plays basketball and soccer with her children. Rivera has also discovered a passion for bodybuilding. Rivera recently competed in the St. Louis Gateway Naturals competition and placed in two events. In doing so, she achieved a lifelong dream of becoming an athlete.
And she’s not done yet. “My goal is to be known as the female athlete who transformed not just my mind but my entire body,” Rivera says. “Just because I’m disabled doesn’t mean that I can’t do what everyone else does.” Rivera is already training for her next event in April.
Her workouts bring her peace, supplying her with evidence of her athleticism while taking her mind off heavier thoughts. “I have PTSD from this disease,” Rivera says. “I have anxiety. I still have fears that creep in every now and then. I still struggle. But it’s OK to struggle as long as we know where we are and how to get through it.”
Rivera feels like she’s found a blueprint for success. Last fall, she published a book about her experiences, Drop the Skirt: How My Disability Became My Superpower. She is also working to make a difference through her nonprofit, Ninjas Fighting Lymphedema Foundation, which aims to assist and counsel fellow patients.
Now she wakes up each morning intent on expressing gratitude for where she is today. She wears what she wants, no longer hiding her disease under long skirts and dresses. For all that lymphedema stole from her, Rivera believes it has given her many things, too.
“Everyone is born into this world with a special gift,” Rivera says. “My gift is lymphedema. If I can be the light for those in the dark, then I’m going to do that until the day that I take my last breath.”
