A night of nostalgia proves compassion counts with chronic illness
Witnessing acceptance and inclusion onstage resonated deeply with me
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When I learned that New Edition, Boyz II Men, and Toni Braxton were touring together, I knew my husband and I had to go. We grew up on their music, and songs from 20, 30, even 40 years ago still make my heart sing (they make me sing, too, but no one wants to hear that). The New York City show we attended was even better than I’d anticipated.
I’ve seen multi-act concerts before and expected the usual format: the first takes the stage for a full set, then the next, and so on. But this tour flipped the script from the start: All three headline acts came out during the first song. Throughout the evening, they took turns performing individually, as groups, and as backup for one another.
Braxton dazzled with her vocals, dance moves, and costumes. At one point, I turned to my husband in awe. Incredulously, I exclaimed, “And she’s doing all of this with lupus!”
Years ago, systemic lupus erythematosus was one of the conditions I was misdiagnosed with before my doctors figured out I have sarcoidosis. The two conditions have similar symptoms, affecting skin, muscles, joints, nerves, and more. It can be difficult for me to get dressed some days, so I can’t even imagine changing costumes multiple times within a few hours, let alone strutting across the stage (in heels!) while belting out lyrics and bringing a crowd to tears.
Boyz II Men wooed the audience with their ballads and brought pure joy as they joined New Edition’s classic routines. But one of the longest ovations they received came when original member Michael McCary, who left the band in 2003 due to health issues (later revealed to be multiple sclerosis), took the stage during their last song, bringing his baritone spoken verse back to “End of the Road.”
I remember feeling so disappointed years ago when I’d read that McCary felt “betrayed” by his bandmates for their reaction to his health challenges. However, he later revealed that he hadn’t told them — or even his wife — about his diagnosis and resulting depression. He didn’t want his loved ones to know, and didn’t ask for the understanding or support that he needed. Now that they know, it was heartwarming and reassuring to see them embrace onstage.
When New Edition took the stage, it wasn’t “just” New Edition. Original band member Bobby Brown joined the group onstage, singing alongside his replacement, Johnny Gill. Each solo artist sang his own hits, and breakout group Bell Biv DeVoe performed their most popular songs as well.
At each intro, whether they were retaking the stage, playing the first note of a song, or getting into position for a 1980s-era dance move, the crowd went wild. While we reveled in every combination, there seemed to be extra love shown whenever Brown appeared. After decades of personal trauma, drug and alcohol abuse, and serious health challenges, he is now in recovery, and both his former bandmates and fans were thrilled to cheer him on.
Inclusion matters
As I reflect on the spectacular show, what struck me most wasn’t just the music or the nostalgia. It was how all the artists supported one another. It was seeing how people with so many different health struggles were welcomed, embraced, celebrated, and included at whatever level their abilities enabled them to participate.
That acceptance naturally resonated with me, as I live with my own health challenges and disability. Like Braxton and McCary, pain, fatigue, and other symptoms have limited my activities and cut into my social life. But, also like Braxton and McCary, I have learned to adapt.
Just as McCary initially hid his diagnosis, many people with sarcoidosis struggle with whether, when, and how to tell others about ours. It’s a significant predicament: We don’t want to be seen as “less than” or pitied, but if we don’t disclose, we may feel resentful when people are not as understanding as we’d like.
When we do speak up, it can change our world. Accommodations at work can help us continue working longer, but only if we ask for them. Mobility aids and accessible seating can enable us to go places we otherwise couldn’t, but only if we use them. Loved ones can only understand what we’re going through — and what we need — if we actually tell them.
It is easy to devalue ourselves when we get sick. When we are not able to fully participate in the life we once had, we may project our fears and insecurities onto others, believing they are better off without us. While it’s true that we may lose some superficial friendships, those who truly love us will cherish the opportunity to include us in any way they can.
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.
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