On July 4, Russell, 58, walked the 6.2-mile race in 1.5 hours. She had hoped to run the entire race, but after the journey she has been through over the past few years, just walking, and walking continuously, was enough to send her into a physical and emotional upswing that has proven to be healing. “That race has helped me just to say I feel like I am back on track with my life,” Russell said. “The last two years have been really hard.”
Scleroderma, a rare group of diseases which involves the hardening and tightening of the skin and connective tissues, affects women more often than men, according to the Mayo Clinic. It also disproportionately impacts Black Americans, who are diagnosed with the disorder at a rate of 23.7 people per million compared to 18.3 people per million for non-Black people, based on data from the Scleroderma Foundation. Black patients are diagnosed at younger ages, and they are more likely to develop complications in lungs and other organs.
If we are lucky, most of us won’t experience the debilitating impacts of a disease like scleroderma, but we can learn a lot about the power of positivity and the importance of resilience from Russell’s journey.
At age 40, Russell started competing in triathlons. She had exercised all her life, but triathlons were next level. Over the years, she worked up to the Ironman. The first time her fingers began growing cold, an early symptom of scleroderma, Russell was prepping to run the Honolulu Marathon. Doctors diagnosed her with Raynaud’s syndrome, a narrowing of blood vessels that cuts off circulation to fingers and toes. But then her hair began falling out. Doctors couldn’t pinpoint an exact cause but Russell knew something wasn’t right. She swept her hair into what would become her signature curly puff, put on the gloves that would become her signature fashion statement and kept on training.
She was still plowing through 10 months of marathon training when in 2009 the diagnosis came after a trip to Mayo Clinic. She had scleroderma. She completed the event, but at the finish line, she struggled to breathe. Pulmonary fibrosis had thickened the lining on the walls of her lungs. Her specialist at Johns Hopkins Hospital said in 10 years, she would need new lungs.
“I was thinking, are you kidding me?” Russell said. But she didn’t let her mind go too far. “I never doubted I would get new lungs and come out on the other side and still be able to train. I just said, I am going to have to put it off for a while.”
By 2011, Russell’s doctors put her on oxygen, at first only at night, then a full 24 hours with a small portable tank that she could carry on her shoulder.
When she arrived home with an oxygen tank, Michael Russell assumed they would not be attending a scheduled black-tie affair. Lovette Russell had other plans.
“If I had a broken arm and had a cast, I wouldn’t be pressed,” Russell said. “(The oxygen tank) just became a part of me for seven years.”
Michael Russell was in disbelief. “I was like, what are you doing? Aren’t we going to fret about this for a little bit?” Russell said, but his wife wouldn’t hear of it. “She set the tone that she was not letting this define her life.”
When a transplant was imminent, Russell moved to San Francisco and lived with a relative while waiting for a donor at the UCSF Medical Center, the hospital with the highest success rate for transplants, particularly among patients with scleroderma, she said. It took years for her to get a match, but she handled the uncertainty with her typical aplomb, said friends.
In 2016, Lovette Russell completed 3 miles of The Atlanta Journal-Constitution Peachtree Road Race with her son carrying her oxygen tank. She did the race again in 2017, but was only able to complete 1 mile. This year, after a double lung transplant, she completed the full race. (Courtesy of Lovette Russell)
“She set examples for all of us. She teaches us every day how to be a better person and how to emphasize what is really important in life,” said her longtime friend Jack Sawyer. He has worked alongside Russell on a number of philanthropic efforts, including the annual Swan House Ball benefiting the Atlanta History Center.
“She is more of who she has always been,” he said. “This has given her an even greater platform to make a difference.” Russell shuns the spotlight, he said, but has shared her story with patients across the country in an effort to help those who need encouragement.
On June 26, 2019, Russell got a new set of lungs, but the recovery she thought would take one year was quickly derailed by a series of events. Medication had left her unsteady on her feet, and she fell twice. The second time, her muscles too weak to break the fall, she broke her nose. Surgery required a careful balancing act with her scleroderma, and it shook her confidence. “I look in the mirror and I am like who is this person? My nose was swollen and my eyes were black,” Russell said. “That was an emotional hit.”
Russell returned to Atlanta in January 2020, just before the pandemic shutdown. She was often so exhausted she couldn’t get out of bed. Her hair had started to fall out, this time due to thyroid dysfunction. Her weight had dropped from 130 pounds to 98 pounds. Then, this past January, after a year of precautions, Russell and her husband both got COVID-19. She believes antibody treatments helped speed their recovery.
“It created a lot of anxiety,” said Michael Russell. “We were both able to recover quickly, but it was scary not knowing what would happen.”
Russell’s steely determination continued to propel her forward. If she could get through all of that, no way was she missing the Peachtree Road Race. She could barely walk down the hallway of her house when she first arrived home, but for nine months, her circle of supporters — including her two adult sons — helped her celebrate even the smallest victories.
Just days before the race, Russell had to have three fingers partially amputated on her right hand after low circulation left the tips of her fingers with dead tissue.
The night before the race, she was so excited she could barely sleep. The next morning, she got dressed, put on her gloves and got moving. She didn’t stop until she reached the finish line.
As she moves back into feeling more like herself, Russell said it has remained important to her to help others. She has continued her work as the chair of the Hughes Spalding Community Foundation Board and as a trustee of Spelman College, her alma mater.
Her goal, she said, is to help people of color in Atlanta go from cradle to college.
Her daily mantra, she said, is to live life to the fullest.
“I have such a blessed life and have had so many really great things happen to me. (This illness) is part of my life. I am able to carry it on my shoulders without it being dreadful and depressing to me,” she said. “It has motivated me to work harder.”
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