By Karla Robinson, MD
One of the Kings of Comedy as he is affectionately known, Bernie Mac is heralded as one of the greatest comedians of all time. While he was bringing in the laughs, many didn’t know he was battling the chronic disease sarcoidosis. While his death in August 2008 at the age of 50 seemed untimely and he is sorely missed, his legacy lives on not only through the classic films, shows, and stand up routines, but also through his foundation, The Bernie Mac Foundation.
Urban Housecall Magazine sat down with his daughter Je’Niece McCullough to find out more information on their family’s experience of living with sarcoidosis, The Bernie Mac Foundation she now runs with her mom, and their determination to increase the awareness of sarcoidosis in the Black community.
UHM: First of all, I just want to thank you so much for taking time out of your busy schedule to talk with us today. Your dad meant so much to so many of us, as he made us laugh till we cried! What was it like growing up with one of the greatest comedians to have ever lived as your dad? Never a dull moment I assume....
JM: First of all, no thanks needed. Actually I should be saying thank you for allowing me to talk about my father and sarcoidosis, as it is definitely a disease that needs to be talked about and I’m grateful that part of my dad’s legacy involves bringing it to the forefront of the medical and public communities.
Now as far as what it was like growing up . . . this is definitely a question that I am asked quite frequently and yet I’m still not quite sure how to answer. To be honest, I can’t really say what it was like because it was all I ever knew. He was just Dad to me. He wasn’t Bernie Mac to the world until I was much older. And the funny thing about that is that while the world began to pay attention and view him as this otherworldly persona, he was still Dad. He never changed. He was still this dominant, charismatic force in my life and in the lives of those he touched. I will say that you are right in your assumption that there was never a dull moment. My father was a big ball of energy and he had an innate gift of lighting up any room he entered. Yes he was funny, but as his daughter, I can’t claim that I always found him funny. He and I were and still are kindred spirits. My dad was truly my soul’s mate. He knew me better than I knew myself and at times, that was beyond frustrating. I spent a great deal of time fighting with him and with myself—just so I could prove him wrong! It’s funny now, but I really miss that dynamic now.
UHM: Typical father-daughter dynamics! There’s nothing like the bond between a father and his daughter. As a proud daughter I’m sure you had to develop some favorites throughout your father’s career. What was your favorite Bernie Mac role and why?
JM: Hmm . . . this is a tough one for me. I genuinely thought my father was hilarious in every movie—even the ones that weren’t good. But I’d have to say his last role as Floyd Henderson in Soul Men is my favorite. I think he blended the comedic and dramatic aspects very well. I think he really got to show his acting chops while remaining true to himself. Dollar Bill from Player’s Club and Mitch Gilliam from Head of State are close seconds because they were so ridiculously over the top.
UHM: I’d have to agree, those are some classic roles! While many of us remember him as a true King of Comedy, a lot of people didn't realize that he was battling sarcoidosis most of his adult life. Do you think he often used comedy as a means to cope when battling his illness?
JM: Knowing my father the way that I do, I’d say he absolutely did use his comedy to cope. My dad used his comedy to cope with a lot of his issues—the pain of losing his mom at a young age, and growing up without a father and what he felt was a cohesive family foundation. So it would not surprise me to know that he used his comedy to cope with a disease that was limiting his physical capacity.
It’s a trait that I love about him, but wished he had relinquished a bit. He never really complained about his own limitations. He always remained strong and calm and proclaimed “You know nothing bothers me. I bother it!” He was very proud, and while I love that tenacity, I can imagine how lonely that must have been for him in dealing with something that was so physically limiting and probably painful, but not feeling like he could be that vulnerable to the world. I’m grateful that he had comedy as his outlet though.
UHM: Did his disease ever interfere with his career either when filming or doing stand-up comedy causing him to have to pass up certain films or roles, or having to delay a shoot?
JM: For the most part, his disease didn’t interfere with his career. As I said, he was very proud and he didn’t allow anything to stand in his way. However, there were a few moments when his disease impacted his career. In 2004, after being hospitalized several times, Fox studio became nervous regarding the show. Taping was extended for the season, and his role as Frank Catton in the Ocean’s sequel had to be cut due to the schedule.
Additionally he was actually slated to play the role of Bobby Davis (Martin Lawrence’s character) in Wild Hogs. This was shortly after it was publicly announced that he was afflicted with sarcoidosis. Unfortunately, because he had been hospitalized and it was announced that he was sick, the studio wanted him to pay an additional $1 million for insurance—even though he had passed the physical exam they had him undergo. He refused and so as you saw, he wasn’t in the movie. But those are the only things I can even think of.
UHM: We know your dad died after suffering complications of pneumonia and this was largely in part because his lungs were already compromised by sarcoidosis. His death seemed so sudden and unexpected to most of us, but had you or the rest of the family and those close to him noticed that there had been a decline in his health over the years as he struggled with sarcoidosis?
JM: In hindsight, I can definitely say I noticed a decline in his health. He moved slower, he was on oxygen, he did have more difficulty breathing, and I will even say that I noticed his mental state began to change. As I said, my dad was very proud and he was very strong. Even though he was very vocal about his health updates and doctor’s appointments, he kept a lot to himself regarding how he felt and what his experience was about. But I noticed that he began to go through what I believe was a depressed state as his physical limitations caused him to recognize his own mortality. But the funny thing about my dad was that he never believed he would live a long life. He always thought he would die young. He never even believed he would make it to 50. Yet watching him, while I can’t speak for everyone else, it was a thing I took for granted. He just seemed so strong that I didn’t think of him suffering. It was literally inconceivable to me. It wasn’t until he was hospitalized that it began to hit me that he just might not make it.
I’d also like to mention that a lot of his problems stemmed from not necessarily the sarcoidosis, but the complications of the medication used to treat it. Originally he was on prednisone (a steroid medication) for many, many years. However, prednisone induced diabetes and other side effects he was not pleased with. So his doctors began to switch him and experiment with a lot of immunosuppressors, which as you know, suppress the immune system, leaving him susceptible to contracting pneumonia so many times. Because the sarcoidosis had caused so much scarring on his lungs, he was really operating with the capacity of one lung. There were times where my mother and I would kind of chastise him for not being as active as he once was and he would rebuttal almost angrily with “You don’t understand how I feel!” That’s the most he would say. But I say all that to say that yes knowing him as well as I did, I couldn’t help but notice the changes.
UHM: With sarcoidosis being such a chronic disease, often times there is a gradual decline that takes place over many years. It can be really hard for the family and friends as those changes begin to take place. Although Bernie Mac is no longer with us, his legacy lives on through his foundation, The Bernie Mac Foundation. Can you tell us about your efforts for increasing sarcoidosis awareness?
JM: I can definitely tell you about our efforts. My father founded The Bernie Mac Foundation himself in 2005. It was during that time that his health began to decline and he began experiencing difficulties. I think he realized how fortunate he was because of his wealth and fame, whereas others could not claim the same. He wanted to put a spotlight on this disease because as you know, it primarily affects African Americans.
My dad was diagnosed in 1983, and unfortunately, over 20 years later, the experience for those receiving diagnoses today is the same. The disease is difficult to diagnose because it mimics so many other diseases. It’s hard to treat because it is not known what causes it. Therefore, treatment is often experimental. Our entire goal is to raise awareness and money so that more research is done in order to ultimately find a cure for the disease. However, at this point, we’ll happily settle (momentarily) for research contributing to correct diagnoses and effective treatments. We have partnered with both the Respiratory Health Association and The Foundation for Sarcoidosis Research (FSR). Thankfully, with our fundraising efforts last year, we were able to give FSR $50,000 toward a $100,000 grant that we promised to them. That money will go to fund the Bernie Mac Scholarship, which will be granted to the top researcher in the field.
We’re trying to raise awareness in nontraditional ways. We want to do things in keeping with my father’s spirit, so we’re having a lot of cool fundraisers like music events and comedy shows so that we can “edutain” folks instead of lecturing. That way, it stays in people’s minds and hearts and hopefully inspires them to get involved. We’ll also be working to create strides in legislation regarding how insurance companies treat Sarcoidosis patients.
UHM: It sounds like the Bernie Mac Foundation has a lot of wonderful things on the horizon to help improve the areas of sarcoidosis research, diagnosis and treatment. I really appreciate you taking the time to share your family's sarcoidosis experience with us, and we will continue to do our part to increase the awareness of this disease.
For more information on the Bernie Mac Foundation and its efforts to improve sarcoidosis research, visit it online at www.berniemacfoundation.com.
1. Sarcoidosis is rare. This is untrue. Clinicians are finding that it may be even more common than once believed. Because it is a disease that is believed to be often undiagnosed or misdiagnosed, it is hard to have a true measure of the prevalence of sarcoidosis. However, most estimate that 40 in 100,000 Blacks are living with sarcoidosis.
2. Sarcoidosis only affects the lungs. This is not true. Sarcoidosis is an inflammatory disease that can affect virtually any part of the body. The eyes, kidneys, heart, brain, nerves, thyroid gland, skin, lymph nodes, reproductive system, joints and muscles, the liver and spleen can all be affected by sarcoidosis. The lungs are still most commonly affected, with over 90% of sarcoidosis patients having some level of lung involvement.
3. I’m young and therefore don’t need to be concerned about sarcoidosis. It’s actually a disease most frequently diagnosed in those 20-40 years old. It’s generally more common for the symptoms of the disease to manifest in this age group. While it has been diagnosed in those over 40, often times it is because of delayed diagnosis or misdiagnosis for many years.
4. Sarcoidosis has a cure. Unfortunately we are still in search of a cure. Although there is ongoing sarcoidosis research, a cause or cure has yet to be determined.
5. Sarcoidosis is not deadly. This disease can certainly be fatal. It’s estimated that 5% of sarcoidosis patients die as a direct result of inflammatory changes caused by the disease. However, many more sarcoidosis patients go on succumb to the disease as an indirect result of its complications or from its treatments. A diagnosis of sarcoidosis should always be taken seriously.
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