Someone gets me in the song that’s become my PNH anthem
'Thunderclap,' by a singer who deals with chronic pain, gives me a boost
Have you ever listened to a song and connected with the lyrics instantly? When you want to keep the song on repeat, or Google the words and sit staring into space while interpreting them?
Listening to music has always been my favorite way to escape reality; in fact, certain songs feel as if they were written specifically for me to hear. “Thunderclap” by Stefan Alexander is one of them.
I found this song after listening to an episode of the podcast “This Is Actually Happening,” in which Alexander talked about his own inspiring health struggles with chronic pain. I connected with his story and how it related to my diagnosis of paroxysmal nocturnal hemoglobinuria (PNH). Yet the lyrics to “Thunderclap” are what stirred my emotions; they continue to make me tear up each time I listen to them.
Three lines (or sets of lines) stood out to me:
‘No, this life isn’t easy/ Oh/ I won’t let it defeat me’
These opening lines gave me chills the first time I heard them. They’re exactly how I feel about my life with PNH.
At times my symptoms and blood levels have been so stable that family members have said they forget I even have PNH. But that doesn’t mean my life is easy. I make a conscious effort every day to keep PNH from taking over my life and to remain as positive as possible. I won’t let my disease defeat me.
‘No one understands what I’m goin’ through’
This line also resonated with me. I have loved ones who sympathize and empathize with my struggles, for which I’m grateful. But they don’t really know what it feels like to have PNH.
This line made me feel seen. I know other PNH patients might understand my struggles, but even with the same disease, our journeys are different. I can explain my life as much as possible, but in the end, I’m the only one who understands what I’m going through.
‘Why does everything keep happening to me?/ How can I survive another injury?’
The questions in these lines are often on repeat in my head. Any time I experience a symptom, unfavorable doctor conversation, hospital visit, or anything else that might come my way while I’m living with PNH, I think, “Enough already. Why me?” I follow that up with the question Alexander asks, with other words, in “Thunderclap”: How much more can I handle?
This internal conversation can be defeating, but it’s necessary for my process of coping.
Sulking in defeat is impossible to avoid in any health journey. In my case, I’ve found it easier to face my challenges straight on rather than trying to avoid them, and “Thunderclap” is the epitome of that process. The lyrics lead me down a road of despair and then encouragement as I remember “the battles I’ve fought and I’ve won.” It’s like a slingshot; you have to pull it backward to propel forward whatever you’re slinging.
“Thunderclap“ has become my unofficial PNH anthem for times when I’m frustrated with my condition and need to belt out in song. I encourage everyone to listen to it, or to find another song that resonates with you. Use it in times when you need a special way to muddle through your emotions and, ultimately, cope.
Note: PNH 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 PNH News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.