Sherita, a graphic designer and public speaker, remembers the day a little over a year ago when she was diagnosed with lupus. The condition varies from person to person, causing inflammation, pain and a range of symptoms that can be fatal.
At the time of her first flare up, she had just completed a graphic design project in Binghamton, NY, where she lived at the time, and was heading to her car.
“As I crossed the street, I felt dizzy and wobbly, my joints throbbed and I passed out.” She collapsed in the middle of a major intersection. “But God was watching out for me,” she says, “because two guys ran out in traffic, and helped me to the other side of the street.” Later she went to the hospital to get checked out.
The onset of lupus for sister, Talia, was more gradual. She’d felt stiffness in her joints, experienced exhaustion and endured back spasms over five years, but didn’t take the symptoms seriously until two years ago after she got progressively worse and was forced to see a doctor.
“I got so fatigued that my body went limp.” She could see the worry on her husband’s face as she remained in bed for days at a time, nauseated and feeling as if her system had shut down. Her doctor gave her a dual diagnosis: lupus along with fibromyalgia.
Lupus can damage skin, joints and organs within the body, particularly the kidneys, and scientists speculate that people who develop the disease are actually born with it. It is believed to remain latent until something triggers it.
“Systemic lupus erythematosus (SLE) has the term systemic as its first name because it affects virtually every system in the body,” says ABILITY medical editor, Thomas Chappell MD. “Lupus is Latin for wolf, because of the characteristic rash on the cheeks that supposedly looks like the person was bitten by a wolf, and finally erythematosis, which also refers to redness or rash on the skin,” he adds.
Fibromyalgia, which also affects Talia, causes long-term pain throughout the body and tenderness in the joints, muscles, tendons and soft tissues. Sometimes it’s hard for her to know where one condition stops and the other starts.
The twins’ reactions to the lupus diagnoses were not at all identical. While Talia says she wasn’t shocked by what her doctor told her, Sherita felt a sense of panic and became convinced that she would die and for good reason.
Only a month or so before she collapsed in the street, Sherita’s mentor, LaShunda Rundles, died of lupus. Rundles was the 2008 Toastmaster’s World Champion of Public Speaking.
“LaShunda would say it was painful for her to get through her speeches,” Sherita recalls. The former toastmaster had a severe case of the disease that ultimately required dialysis. Yet the young dynamo bested all the other speakers to emerge as the first African-American woman to take the Toastmaster’s top prize. Just four years later, in August 2012, Rundles succumbed to lupus.
“It was so traumatic that I equated lupus with death,” Sherita says.
After their diagnoses, both sisters dove into medical research to learn about their options. Ultimately, they overhauled their diets. They now eat more dark greens, and consume less red meat, sugar, cow’s milk and salt. They also favor gluten-free foods, drink a lot more water and take vitamin supplements.
“If you create balance in your life, you can manage it,” Talia said, “but it’s always something that’s there. You feel a tightening in your muscles and bones, and it’s very painful. Mine is more like stress in my back and spasms every night.” Though she takes muscle relaxers and ibuprofen, Talia finds that nothing helps for long.
Lupus is tricky, says Dr. Chappell. “As an autoimmune disease it is characterized by a poorly understood phenomenon whereby our immune systems see components of themselves as foreign, attacking and rejecting them as if they were a virus or bacteria. As you can imagine, this causes chaos in the body.”
While both avow the calming power of prayer, they have different perspectives on working out. Talia finds that exercise can be too draining, whereas Sherita has ramped up her exercise routine considerably. She and new husband, Mark, hit the gym frequently, often posting Facebook photos of themselves with towels around their necks as they exit a workout session.
They initially met more than two decades ago at Cleveland School of the Arts, and then reestablished their friendship on Facebook over the last couple of years, delighting in the fact that their feelings developed into something deeper.
“When we reconnected, I saw that he was working out, and I had also started working out in New York. Now it’s something we do together, more consistently than I did before,” Sherita says. At the gym, she chooses exercises, such as the elliptical machine, that are gentle on the joints. When a flare up hits, she lies down and lets it roll through, warning her husband: “I can’t work out as hard today.”
The sisters, who were born prematurely just over 35 years ago, report that they’ve battled health issues before:
“Talia and I have had a few medical problems since we were kids. We came a couple of months early and still had some growing to do.” They stayed in the hospital three months after birth so that they could gain weight and develop under the watchful eye of hospital staff.
Sherita remembers being monitored from 4 years old until they were teenagers at Rainbow Babies & Children’s Hospital in Cleveland. “We’ve dealt with signs of leaky gut, intestinal problems, and other challenges,” she says. In recent years, the sisters have been hospitalized a few times with lupus-related challenges.
Lupus tends to mark those who have it: “There’s often a rash across the bridge of the nose and cheeks in the pattern of a butterfly—often called a butterfly rash—which defines the disease, but the brain, heart and lungs are not spared,” Dr. Chappell says. “There’s also a combination of arthritis, abdominal pain, nausea and vomiting, due to the condition’s impact on the digestive tract. These symptoms combine with fatigue and overall malaise.
“Adding insult to injury are lupus’ perplexing symptoms of sensitivity to light, unexplained fevers, mouth sores and hair loss,” Dr. Chappell continues. “While the condition does not discriminate among our organ systems, it does tend to affect mostly women, and mostly African-American and Asian women. Although it’s not understood why, it certainly suggests a genetic phenomenon.”
As a playwright, Talia finds that her flare-ups are more intense when she is in the middle of a production. The busy mother is frequently writing a new show and is currently in negotiations to acquire and restore Binghamton’s Cameo Theater, which was built in 1930 and closed permanently in 2002.
She relocated to Binghamton more than a decade ago after college with her oldest daughter, Antanaja, now 13, and husband, Derrick, so that he could pursue a career opportunity. Their youngest daughter, Rayn, is 8.
In recent years, sister Sherita has lived off and on between Binghamton, where her mother and brother also relocated, and Cleveland, where the family started out. She has a boy, Akil, 16, and a girl, Aalayah, 13, from her first marriage.
Talia’s career as a playwright is gaining steam. She’s now working on a show called In My Mother’s Shoes, inspired by The Wiz; presenting a performance piece on domestic abuse entitled Remember By Name; and recently mounted a production of her original play, Sneakin Wit The Deacon. Over the course of Summer 2013, she led a theater workshop program for youths with the Broome County (NY) Urban League.
Meanwhile in Cleveland, Sherita, who remarried in March, is in the midst of a career change. She spent nearly 20 years as a graphic design artist, but is now transitioning into the motivational speaker and mentoring arena. Recently she hosted a 12-week workshop series called “Back To Being You,” to support people as they learn new ways to navigate personal growth. As a public speaker, she recently topped out at the regional level of a Toastmaster’s international competition.
“Next year I hope to go even further,” Sherita says. “Speaking is my purpose. It’s the one thing that I can do without fail that gives to others, while also feeding my spirit. It’s truly what I would do, even if I were not paid for it,” she adds.
The demands of being in the public eye and pleasing an audience can add additional layers to the siblings’ efforts to manage self-care.
“When I’m most calm and not worried about too many things, lupus doesn’t affect me. But when I start to stress and take on more than I should, or I’m in the middle of a production, it flares up,” says Talia. On the final day of her last show, her symptoms went into overdrive. The demands of dealing with a cast and crew, of opening a new show, and battling the nerves that go with it proved overwhelming.
“I didn’t want to display my stress in front of everyone, so I did the meet and greet, went home and that’s when a spasm hit.” She stayed in bed until 11 the next morning. When she finally ventured out, she headed straight to a place where she could get spa treatments to boost herself up.
The twins initially resisted slowing down, but they haven’t had much of a choice.
“My sister is a roadrunner,” Sherita says of Talia, “she always goes, goes, goes, so to see her in a state where she can barely move came as a big surprise. I’m a roadrunner too, but this disease has calmed me down a lot. My husband takes care of the household financially, which allows me to take a break and step back.” On her worst days, she says, “I’d rather go through childbirth than have a lupus flare.”
Some days both sisters report being symptom free and “running like 20 year olds,” the normal pace for them before the disease struck. They imagine that there are a lot of roadrunners out there who have the condition but don’t know it, or worse ignore the symptoms until they become too difficult to manage.
Sherita, who recently moved back to their hometown, Cleveland, married Mark Carthon, Sr., who himself has been battling a health challenge or two in the last few years, which brought them closer, and made them more compassionate towards one another.
“There are some days,” Sherita added, “that I’ve thought: ‘God just take me home.’ If I didn’t have my husband, I’d be a basket case.”
Talia gets a great deal of moral support from her husband, as well. For her, a flare up can last 24 to 48 hours, where the pain is both horrible and debilitating. She’ll take a muscle relaxer and pain meds and then lie down to endure the muscle and bone ache until she can make it to the other side of the episode. “I wake up and feel like I’m an old lady with arthritis,” Talia said.
Still, the twins push through the challenges, set ambitious goals for themselves, and pursue their dreams with abandon.
“Kudos to anybody battling this,” Sherita says, “because it’s not easy. I keep it in perspective by focusing on health, rest and work. My husband and I also laugh a lot. Talia and I are not the first ones to have this disease, and we won’t be the last. I hope we can use what we’re experiencing to do some good.
by Pamela K. Johnson