Ruth Ava Lyons greets me at the door of her midcentury modern house in south Charlotte, a long way from NoDa. She leads me into the kitchen with a warning: Watch for toys on the floor. They belong to her granddaughter, Aspen, not yet 2, who lives just a few minutes away and visits often. Lyons and her husband, Paul Sires, are always thrilled to see Aspen, even though Lyons’ condition means she can no longer pick her up, certainly not on the bad days. Today, though, Lyons says, “I’m having a good day.”
She’s learned to treasure those over the last few months, days when the fatigue, nausea, and muscle cramps ease and she can run errands, paint for hours in her studio, and live something like the perpetual-motion life she led until a few years ago. But they carry their own risk. On good days, Lyons thinks she can do more than her body can withstand, and “I always pay for it,” she says. With each week, she has more bad days and fewer good ones.
Lyons, 67, has a genetic disorder called polycystic kidney disease, or PKD. Her mother, Sally, had it, and when Lyons and her younger sister, Nadine, were in their 20s, Sally made them get tested for it. That’s when both sisters learned they had it, too.
PKD causes clusters of fluid-filled cysts in the kidneys, which over time swell and lose their ability to function. At that point, stage 5 renal failure, the patient can survive only with dialysis, a transplant, or both. Lyons is at that point. Her mother reached it before she died in her 60s in the early 2000s. Nadine, a year younger than Ruth, got there before she died, awaiting a transplant, in 2010.
The severity of Nadine’s condition in her final months finally pushed Lyons to see a nephrologist. Nadine’s symptoms had always been worse than hers, and Lyons thought she could stave off the condition by staying active and healthy. She did, for a while. “I saw my family members hooked up to machinery and still thought I wouldn’t let it get that far,” she tells me. “But it was coming for me.” She refers to PKD as her “dark companion.”
The realization forced her and Sires to close Center of the Earth Gallery, which planted the seed of the neighborhood we now know as NoDa. The business caused too much stress, which can worsen the effects of PKD. Since then, she says, the disease has gradually taken away pieces of her life: her love of adventure, yoga practice, hula hooping, travels to Indonesia and the Amazon and to Burning Man.
Finally, in April, it denied her one more thing she’d clung to. Lyons could no longer keep her condition a secret. She had to ask publicly for a kidney to save her life.
She and Sires met at Kent State University in Ohio in the 1970s. She’d painted since childhood, he sculpted, and they embarked on a life of art and adventure. In 1983, they moved to Charlotte when Sires landed a job as a resident artist at Spirit Square. (He mainly wanted the health insurance.) They thought they might stay for a year.
In 1986, captivated by the decayed, historic mill village just northeast of uptown, they bought the Lowder Building at 3204 N. Davidson St., built in 1927, for $40,000. Lyons and Sires set up studio space and an informal gallery in what was then a dangerous, crime-ridden neighborhood. “Those were the days,” Lyons says, “when you could find a parking space.”
They founded Center of the Earth in 1995, and for the next 15 years, it was the nexus of Charlotte’s arts neighborhood, an eclectic blend of galleries, coffee shops, dive bars, independent boutiques, and assorted eccentrics. Lyons and Sires became known as the metaphorical mother and father of the neighborhood once known as North Charlotte, and the couple helped pick their baby’s new name: NoDa. They’ve moved but still own property in the neighborhood, including the land and building at Davidson and East 36th streets that’s home to The Evening Muse.
When Lyons and Sires closed Center of the Earth in 2010, they explained vaguely to reporters and patrons that they wanted to work on their art and spend more time with family. They concealed the real reason—Lyons needed less stress and wanted to be with Nadine in Cleveland, their hometown, for the last few months of her sister’s life. Lyons has always been a deeply private person, and she didn’t want anyone unnecessary to know about her PKD. Even as the disease progressed—after a scuba dive in Mexico this January, she vomited, something she’d never done before—she assumed she had a worst-case fallback. Although she once said she’d “walk off into the sunset” before she agreed to it, she’d begin dialysis, and her healthy husband would donate one of his kidneys.
Organ donation is a delicate business. The recipient has to be healthy enough for a transplant—Lyons is—and donors go through numerous rounds of testing to determine if they’re viable matches. Sires cleared the first several rounds. Then early this spring, he says, doctors detected an issue with his renal veins, which carry blood from his kidneys to his heart—not an immediate threat to him but a disqualifier for organ donation. Their fallback plan was shot.
Around the same time, their son Orion’s partner saw a truck with a sticker that read, “Kidney needed,” and a phone number. The couple took it as a kind of sign. They would have to go public.
On April 9, Lyons posted a long note to her Facebook page that began, “It’s time to get real.”
As of June, Lyons had begun peritoneal dialysis, which uses the stomach lining to perform the normal job of the kidneys, to filter waste from blood. It required surgery to implant a port in her abdomen and a 2-foot hose for the dialysis solution. She’s come to accept it. “I hope there’ll be a way to glam it up,” she told me before surgery.
It’s a way to buy time until a donor emerges. In June, she was on the waiting list at Atrium Health in Charlotte and Winston-Salem, and she was hopeful—her health insurance would cover the entire procedure. Friends have offered. Orion did, too, of course, then learned this year that he has PKD, too. He was “devastated,” Lyons says, but she wouldn’t have accepted a donation from her own child anyway. (As of June, their daughter, Eden, who lives in California, was scheduled to be tested.)
Lyons and Sires have been overwhelmed by the response to her plea, even when people can’t donate. Their friend Wendy Hickey, who founded the arts nonprofit ArtPop Street Gallery, arranged for three billboards around town that display her photo adorned with butterfly wings and the URL to her donations site, HelpRuthFindaKidney.com. A friend recently called Sires with the well-intentioned message: Please let me know if there’s anything I can do, anything at all.
“OK,” Sires replied, “left or right?”
“Oh, I’ve done too many drugs,” the man replied. “You don’t want mine.”
On good days, Lyons gets around as well as she can and spends time at Starlight on 22nd, the bar and performance venue that she, Sires, and Orion opened in 2021. Sires will occasionally do a stand-up comedy set there. He’s working on some kidney disease jokes. Humor helps them get through the days as they wait and hope.
Lyons still paints, too. Around 2010, when Nadine died, her painting style changed. Her early work was dark-hued and mysterious. Now she paints in brighter colors—a reflection, she says, of her concern about climate change and its effects on the natural world. Her more recent paintings teem with coral reefs, flowers, birds, and oceans rendered in hot pink, cadmium yellow, and gold leaf.
On June 20, she posted something else meaningful to her Facebook page, what she saw as a kind of self-portrait: a golden butterfly, flecked with black spots, against a backdrop of brilliant red. She never meant for her art to reflect her condition. But when she finished the self-portrait, she realized with a start what the black spots meant.
“I’m a filter for all the stuff that happens in the world,” she says, “and I guess it would be that way in my own life.”