In the preface to her new book, “Unexpected Blessings: Finding Hope and Healing in the Face of Illness,” Roxanne Black, founder and executive director of the Friends Health Connection, uses the perfect image to capture how her world fell apart when she was diagnosed with lupus. She describes a favorite childhood toy — a take-apart model of the human body with bones, organs, and blood vessels, called Visible Man — and then writes:
“The Visible Man made me believe that bodies were flawless, magnificent machines, perfectly designed. In the fascinating jumble of livers and stomachs, there were never kidney stones, blockages, or tumors. So when I was diagnosed with systemic lupus at the age of 15, not only was I shocked, I felt betrayed.”
But as Black went in and out of hospitals, in the throes of anger, self-pity, and a steroid-induced weight gain, her mother suggested that perhaps she had become ill for a reason. Her mother’s comment, which inspired a change in Black’s perspective from self to others, was a turning point. It led first to Black’s creation of a lupus support group and then to the founding of Friends Health Connection — now a national organization that presents prominent speakers on a wide swath of health-related topics — to bring together individuals with the same illnesses for mutual support.
Black will appear at a book signing on Thursday, October 30, at the Robert Wood Johnson Hamilton Center for Health and Wellness at 3100 Quaker Bridge Road, Hamilton.
To start that first support group, at age 15, Black invited her lupus specialist to give a lecture, reserved a community room at her town library, and then convinced a health reporter to write a feature to publicize the event. “I get determined when I want to do something,” says Black. “A lot of people think about things, and say, ‘what if,’ or ‘some day.’ I feel like once I have an idea, it comes alive. It is what is in my mind and I just have to go through the steps to make it real.”
The meeting was a great success. Dozens of people filled the room, and although many were two or three times her age, they coalesced into the ongoing support group she needed.
That first group was the germ of what was to come — the founding of Friends Health Connection. “The whole premise is people helping people,” says Black. “When one person can say to another, ‘I understand; I’ve been through it,’ a magical bond is formed.”
Though Black was fortunate to have wonderful friends and a loving family — her older sister, Bonnie, even donated a kidney to her — not everyone is so lucky. Even close relatives may not feel comfortable talking about what the patient is going through. “Though people can empathize or be there to support you, they don’t know what it is like to use steroids, lose hair, or connect to a machine to do dialysis unless they have done it,” says Black.
Not only was the creation of Friends Health Connection a service to the community, but it also gave Black a realm, outside of her own health, where she was in control. “Starting an organization gave me something positive to focus on and gave me a purpose,” she says.
Black’s first sally was a heartfelt letter to reporters about her idea to connect people with the same health challenges. Written 20 years ago from her dormitory room at Rutgers University, the letter yielded a small article in USA Today and a segment on CNN, which together spawned more magazine articles.
The letters poured in from people with both common and rare diseases, from all over the country. Although Black herself was in and out of the hospital battling her own illness, her work didn’t stop. “I set up my hospital room like an office,” she remembers. “I would bring in office supplies, and my mom would pick up the mail and wheel it up to me in cases in wheelchairs.”
Using a Dewey decimal card storage drawer that the library was throwing out, she filed index cards by disease, with each one listing the person’s name, age, symptoms, medications, hobbies, interests, and attitude. “When someone contacted me, I would lay the cards out on the floor,” she says. “It was like the Match Game.” When she found a match, she would put the people in touch and inevitably they would call a few months later and tell her things like “This person has become my best friend” or “We talked all night the day before I had my surgery.”
Since then the growth of Friends Health Connection has been onward and upward. Johnson & Johnson provided initial funding. In 1990 Black was recognized by President George H.W. Bush as one of the Thousand Points of Light, and a press release by the White House press secretary spurred even more growth.
Fifteen years ago, Friends Health Connection added a lecture series featuring health and wellness leaders as well as inspirational speakers, and three years ago it added a nonprofit speaker’s bureau for hospitals, nonprofits, corporations, and conferences whose fees help support the organization. For years it has worked with hospitals to distribute information about Friends Health Connection when patients are admitted and discharged.
Black lived in East Patterson until second grade, when her parents separated and she and her mother moved to Allentown, Pennsylvania, to be close to her mother’s family. When Black was in fifth grade, they moved to Atlantic City.
Black’s father taught math and business in the worst section of the Bronx. Her mother was a registered nurse and an artist, who eventually went back to school in art therapy. So of course when Black was homebound, they would stop at A.C. Moore to load up on craft supplies. “I loved making things,” says Black. “It was a distraction, but it helped me relieve emotions within.” Spoken like the true daughter of an art therapist, Black says that making a mess was the exact opposite of a sterile hospital environment.
As a chronically ill person, Black has had to learn to adjust her life to the limitations her illness imposes. Because ultraviolet light from the sun can trigger a flare-up, for example, she and her husband will take walks or kayak close to sunset. “I’ve learned to appreciate that time of the day,” she says, “and my husband is right there with me.”
From her experience as a patient, she has also learned about the do’s and don’ts of care-giving. When she was sick and living at home, her mother would do everything for her, but her friends at college used an approach that was much healthier psychologically. They would say to her. “Tell us what you really can’t do. You can’t stretch and can’t lift, but you can wash dishes.” Because they expected her to pitch in like everyone else in ways she was able, she did not feel helpless or like a burden.
For Black, the process of helping so many people through major life challenges has taught her to see the commonalities among human beings. “When push comes to shove, we’re all people,” she says. “None of us is immune to illness, no matter what religion or ethnic background or how wealthy we are.”
To date, the Friends Health Connection has linked up about 15,000 people. Among these have been famous people like Deepak Chopra, Andrew Weil, and Christopher Reeve. But what Black calls the “unexpected blessings” in the title of her book can come from anyone — like the hospital cleaning lady who sang “Amazing Grace” for her. Black says, “I think about what stands out from my life and all my experiences are the people who come in and out of your life, remain unnamed, but profoundly impact how you see things, the experiences you have, and how you interpret the world.”
Author Event, Thursday, October 30, 7 p.m., RWJ Hamilton Center for Health & Wellness, 3100 Quakerbridge Road, Hamilton. Roxanne Black, author of “Unexpected Blessings” and founder of Friends’ Health Connection. Booksigning and talk. Register. Free. 800-483-7436 or www.friendshealthconnection.org.