A powerful performance from the past reminds me that ‘It’s OK’
Life with FA is unquestionably hard, but I am so much more than that
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My family and I recently started streaming season 20 of the popular show “America’s Got Talent,” also known as “AGT.” I love seeing my children react to the beautiful singing, athletic dancing, mind-blowing magic, edge-of-your-seat danger, and much more.
To quickly summarize, all acts must audition for four judges, who vote yes or no to advancing the contestant to the next round of auditions. After a second round of cuts, the remaining acts appear on stage in a “live” show, where they perform for a voting audience.
When a judge finds an act particularly outstanding, they can hit the “Golden Buzzer,” which sends the performer directly to live shows, bypassing the next round of cuts. One episode in season 20 was dedicated to the memorable “Golden Buzzer” acts over the years.
I’ve long been a fan of “AGT,” and rewatching one particular audition from 2021 moved me to tears again. A soft-spoken, petite beauty named Jane Marczewski, aka Nightbirde, took the stage and was interviewed by comedian and judge Howie Mandel. She told the judges that she’d be performing an original song called “It’s OK.”
Mandel, after learning that Nightbirde hadn’t been able to work lately because she’d been dealing with cancer that had spread throughout her body, said, “Oh, so you’re not OK?” Nightbirde smiled and replied, “Well, not in every way, no.” Then she added, “It’s important that everyone knows I’m so much more than the bad things that happen to me.”
After a stunningly beautiful performance of her song, she told judge Simon Cowell, “You can’t wait until life isn’t hard anymore before you decide to be happy.”
I felt, once again, moved by her philosophy of dealing with life-altering medical situations with the most positive, peaceful, resilient, humble, and compelling attitude.
I have Friedreich’s ataxia (FA), which is very different from cancer. The mindset required to battle each different iteration of a disease is very personal and widely varied. They are not comparable journeys, but so much can be learned and applied to life beyond specific medical situations. The comments by Nightbirde, who sadly passed away less than a year after that audition, changed my approach to life with FA, and I thought it was worth sharing to honor her legacy.
A diagnosis of FA certainly could fall under the category of a “bad thing.” However, as Nightbirde said, I am so much more than the bad things that happen to me.
I am more than the girl with FA in a wheelchair who has fallen and broken lots of bones. I am a friend, wife, mother, daughter, sister, cousin, niece, granddaughter, aunt, pet owner, neighbor, child of God, and so much more. I have a wonderfully fulfilling, laughter- and purpose-filled life that no diagnosis can take away from me. It certainly changes and affects countless areas of my life, but I won’t give it the power to negate all of the good in my life by defining everything negatively.
FA makes life hard, but as Nightbirde said, I am not going to wait until life isn’t hard anymore before I decide to be happy. My FA isn’t going anywhere anytime soon, but neither is the grit and grace I draw from to make the most of things and enjoy my beautiful life.
“Because God loves us, none of these troubles can ever beat us. He makes us win against them.” — Romans 8:37
Note: Friedreich’s Ataxia 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 another 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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