August 8, 2019

Spreading RLS Awareness Through Sacred Threads

By Zibby Crawford

Three striking quilts hang on the walls of the RLS Foundation in Austin, Texas. More than a decoration, they are a unique and powerful tool for RLS Awareness. Starla Phelps, an RLS Foundation member since 1994, is the artist that created each quilt to be displayed across the country at quilt shows sponsored by Sacred Threads, a nonprofit organization that exhibits quilts to inspire healing and strength.

RLS Dancing

The Foundation received the first quilt called “RLS Dancing” in 2014. In this quilt, Starla expresses her experience living with RLS both through embroidered images and a poem that she wrote to describe the sensations and how RLS affects her life in so many ways.

An accomplished quilter, Starla found her inspiration for the quilt in a magazine that featured a dancer. Her severe RLS has her constantly moving her legs to relieve her symptoms – “dancing around the house” to draw her mind away from the discomfort.

“The poem is trying to express what anyone might have (people have this in varying degrees) and also to express the fact that I love my husband, but he’s sound asleep and I’m up. I don’t want him to be up and miss sleep, but it’s upsetting to be out there again, and nobody is there with me.”

On the quilt, the text is surrounded by dancing figures and many panels with hand-embroidered scenes of activities like laying on the beach, sitting on an airplane, using a computer, and dining – “all the things I can do when I have the RLS drugs, but that I cannot do without them,” says Starla.

The back of the quilt includes printed fabric showing women playing sports. “One thing I’ve found is that you need to have some exercise, but if you have too much, it backfires on you, so there’s a fine line.”

Forward

“Forward” is the theme of another quilt Starla exhibited with Sacred Threads in 2015, before donating it to the Foundation.
“I look forward to SLEEP after years with minimal amounts of sleep due to a brain disease commonly known as RLS,” says Starla in an artist’s statement accompanying the quilt in the exhibit. “Treatment has not been very helpful, but I am now undergoing another treatment and I have to be hopeful for the future – going forward into the future.”

The fabric and quilting use “zzz” patterns to represent the “many nights that I spend trying to quilt when I am so exhausted, but can’t sleep.”

Along with her description of the quilt, Starla included information about “What is RLS” to raise awareness and understanding of RLS to all who viewed the Sacred Threads exhibit.

Hope

“Research = HOPE” is the theme for the most recent quilt Starla presented to the Foundation, during the recent, well-attended RLS Advocacy Day on Capitol Hill in Washington, DC. Starla included a summary with her quilt that stated, “My greatest personal HOPE is that someday a cure will be found, and a worldwide recognition and understanding of RLS.”

To describe her art, Starla writes: “The words around the legs and brain are the words that RLS sufferers use to describe this difficult disease. The RLS Foundation was founded in 1992 to actively provide education, fund research, establish RLS Quality Care Centers, and ongoing involvement in RLS outreach. I have donated two other quilts to the RLS Foundation; and this quilt will also go to them. My goal is to encourage quilters and other artists to begin creating art that demonstrates to the viewer the horrible nature of this disease. I hope that soon the public will help to fund research. Since the disease is so difficult to explain, it is overlooked when people donate money to causes.”

Starla’s journey with RLS began with childhood symptoms that went undiagnosed until she was in her thirties and, at a Christmas party, her husband fell into conversation with a woman who was moving her legs and calling it RLS. With this information in hand, Starla went to see a neurologist and was diagnosed with the disease.

Starla urges others to share their experiences through art. She says making these quilts is cathartic, but more importantly, it has helped to educate, comfort and inspire others who have the disease.

Starla holds a degree in fashion design, is a race car instructor and driver, served on the RLS Foundation Board of Directors and worked for many years as a certified public accountant. Starla and her very supportive husband, Fred, live in the Washington DC area.