Roxanne Black is the Founder and Executive Director of Friends’ Health Connection, begun when she was only a high school student, shortly after she was diagnosed with Lupus. Her deep felt desire was to share a camaraderie with another teenager with Lupus. Evolving from that point, Friends’ Health Connection connects people with various diseases and conditions to each other. Roxanne Black is a Rutgers graduate, has been appointed the 268th Daily Point of Light by former President George Bush, received a medal from former U.S. Senator Bill Bradley, and was named by USA Today while in college as one of the top eighteen college students in the country. Roxanne Black is the author of the recently published and eagerly awaited Unexpected Blessings: Finding Hope and Healing in the Face of Illness (Avery, 2008).
Roxanne, You’ve come a long way since age 15, when you were diagnosed with Lupus. How do you feel about yourself emotionally now, compared with when you were that teenager?
I think I was very insecure when I was young. You become more secure with yourself while you age – more comfortable in your own skin. Everyone thinks I’m so confident; in some ways I am and some ways I’m not. Exceeding your own expectations builds confidence. I’m surprised that 20 years later I’m still running this organization, considering that I started with nothing.
I’ve made some breakthroughs in healthcare – I’ve sat down with hospital administrators and convinced them to implement my program. In doing so, I’ve found that I’ve knocked down some walls in healthcare. I’ve shown that patients connecting with one another for support can be extremely valuable.
In some ways illness made me grow up faster. I’m proud overall that I’m still here. Illness humbles you, and it allows you to see the world differently.
How do you feel physically?
I feel great now! I’d had arthritic symptoms. The transplant (my second two years ago) was a gift of life. I take medicine everyday and go to the hospital each month for blood work. I stay out of the sun now, and my best time of day is evening. I try not to make illness the focal point of my life. It doesn’t define me.
What has been your greatest challenge in life?
I’ve had several key challenges, but the loss of my mom was the greatest. She died suddenly in 1995 from an asthma attack. She was my rock. Illness brings people together, like nothing else. You bond together on a deeper level. Once I met Christopher Reeve; he told me that he saw a lot of marriages with spinal cord injuries fall apart. The strong marriage catapults you to a higher level.
When my mother passed away, a friend gave me an important piece of advice. She told me that loss is like a camera. Initially it zooms in, focusing on the details, but over time the camera pulls back and then you remember your many times together. You move on, the hole is always there, but that person is always there too.
How has the Lupus changed your life for the better?
I write about this in Unexpected Blessings. Throughout life, challenges and gifts come to us. In the beginning we think, “Why me?” Life throws you these curve balls. Illness taught me what matters. Sure Gucci handbags are nice, but they’re not what matters in life. Instead it’s the people you meet along the way. Through our hardships we see beauty and learn where our values should lie. One time I was in the hospital. Every day I had a cleaning lady who would sing Amazing Grace, and say a prayer for me. That helped me get through that hospital stay. Health and friends, laughter, this is as good as it gets
Do you feel that you’ve lived up to the expectation of helping others?
Initially there are expectations. I think that my expectation is when you do your personal best, that’s what matters. You can’t worry what people think. You have to go with your heart. If you’re happy with it, that‘s all that matters.
I made a conscious choice growing Friends' Health Connection, because it gave me a purpose and was rewarding. If I have a vision, I always have to go for it and try my best. I try to make my vision a reality. They told me I might be very ill for the rest of my life, but I never let doctors’ negativity influence me. I always thought I would be fine. I really believe I was meant to get sick so that I could help others.
If you could do anything over again, what would it be?
It’s hard to live with any kind of regret. We have to accept that we’re constantly changing and growing. Then later in life we understand people differently. I write about my father in my book. He had an OCD condition, and as a child, I didn’t understand this. As we age, we recognize that people need compassion, even if we don’t understand. We don’t know what that person has been through.
How many people are associated with Friends' Health Connection?
Last year 16,000 people attended our events and approximately 15,000 people have been connected to Friends' Health Connection friends through the years. With the publishing of Unexpected Blessings, Friends’ Health Connection is also launching our new online community. It’s free and it’s intended for those with health challenges and caregivers who wish to connect with each other. It’s nice to be able to log on and tell someone I‘m having a bad day, and network with others who can understand and help. Our connections represent people in many different places: Africa, Israel, Asia, Japan, Europe, and they cover hundreds of chronic diseases, both common and rare.
Where do you anticipate Friends’ Health Connection to be 20 years from now?
I have a lot of things I’d like to do in life. Personally, I’d like to see Friends' Health Connection continue to flourish and touch lives, being known as the premiere place where people with illness get connected for support, a main resource to which patients and caregivers turn. We also would like to continue be known as a source for outstanding health and wellness speakers.
I think we’re so involved with politics, but what it comes down to is people helping people. The beauty is how we care for one another, even in our small communities. Each person’s own interactions and good deeds are what keep the world going round.
Roxanne, what do you want us to know best about you?
I put my heart and soul into everything I do. It hasn’t been easy. There are always things you cannot plan for. I’ve done my best with what I have and I am grateful to everyone who’s helped me.
You can survive. Each of us has the power within us to make a difference. Don’t give up. There were times I was sick and thought “This is how it’s going to be for the rest of my life.” I’d like to give hope that you can get through things. Recognize all that you do have right now. Look at what you can do and work around your limitations. Cherish the blessings, the wisdom you’ve learned, and the insights you’ve gained along the way.
Read the Book Review of Unexpected Blessings.