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by Stacey Cahn, Chief Correspondent, CreakyJoints
Roxanne Black—www.roxanneblack.com—is the founder of “Friends’ Health Connection,” the pioneering online network where chronically ill people can share their challenges and their pain. She is a whirling dervish, who may seem typical of a 43-year-old working woman juggling roles as a wife and mother of an active 4-year-old in the Jersey suburbs—but this multi-tasking supermom has lupus.
Roxanne was diagnosed with lupus, a chronic, inflammatory, multisystem disorder of the immune system, at the age of 15. Before that, she had been the picture of health, an active, athletic teenager. Feeling alone and cut off by her disease, during her freshman year at Rutgers University, Roxanne envisioned a support service that would allow anyone anywhere suffering from a chronic illness to find someone to talk to; someone around the same age with the same health problems.
It was 1989 and after appearing on CNN and other news outlets to discuss her dream, Roxanne, from her hospital room where she was surrounded by dialysis equipment, extracted patient stories from the thousands of letters she received. She’d write key criteria on index cards, and, with volunteers, hand match patients. Soon, a woman with cystic fibrosis bonded with another woman with the same disease a thousand miles away. Two men with similar brain tumors were talking weekly on the phone.
This network would become Friends’ Health Connection, now an internationally recognized organization that has touched tens of thousands. Roxanne received several honors for her efforts; she was appointed the 268th Daily Point of Light by President George Bush and named one of the top eighteen college students in the nation by USA Today.
Lupus, unfortunately, has had its complications for Roxanne. She has undergone two kidney transplants—the first donor kidney came from her older sister Bonnie in 1992. After that kidney failed, Roxanne received a second transplant in 2008, this time, two tiny kidneys from an 8-month old infant who had died, which was” devastating but lifesaving.” Those kidneys will eventually grow, replacing the failed ones, which are not being removed because it’s “major surgery”; they shrink through atrophy. “Yes, if you add it all up, I have five kidneys,” says Roxanne who is quick to point out the two transplants not only gave her a second chance at life but a third one, too.
Roxanne recounts her lupus and life journey in the book, Unexpected Blessings: Stories of Hope and Healing first published in 2008. “Even through life’s most difficult challenges I think there are blessings and gifts that are to be found if we are open to seeing them,” she said.
Roxanne credits her trying to find a sense of purpose for giving her the ability to cope. Among the many who have praised Roxanne’s book and message include Dr. Oz and Deepak Chopra.
“Life happened to Roxanne while she was busy making plans. Her heart felt experience reminds us of the sacred experiences we all share,” wrote Mehmet Oz, M.D., while Deepak Chopra, M.D., noted, “With wisdom and grace, Roxanne Black shows us that we can find laughter amid tears, and a sense of deep optimism in spite of our struggles and pain. UNEXPECTED BLESSINGS is deeply moving.”
In 2013, Roxanne’s beliefs were put to the test again when she was diagnosed with Lymphoma. “I was put on chemo to knock it right out. This was a game-changer for me,” Roxanne recalls. “Suddenly, it felt like a question of life or death.” It was a sobering reminder to live life to the fullest. “It made me want to do everything that I used to say ‘someday, I’ll have the time to do this.’ The time became right now.”
For health reasons, Roxanne scaled back “Friends’ Health Connection” to online live webinars but she does take calls, answer emails and people are still connecting. Roxanne devotes her time to staying well and playing with her daughter, now a preschooler. They “share” an arts and crafts room at home where there is always a new project underway. There is a lot of laughter in their lives along with construction paper, glue and glitter. “Every day we just to do something fun.” The latest project is making jewelry.
“After everything I’ve been through, I’m more grateful for the little things” she marvels.” I say that I am ‘grateful for the mundane” and when life is just average, to me it’s just wonderful.”
You can learn more about Roxanne Black, her story and the Friend’s Health Connection at www.friendshealthconnection.org and find out more about her book, “Unexpected Blessings” at www.roxanneblack.com.