The Day the Music Lived

The emotions of an 11-year-old girl named Riley take on a life of their own in the 2015 Pixar movie “Inside Out.”

In the animated film, the control center of Riley’s brain is headquarters for five emotions portrayed as the characters Joy, Fear, Anger, Disgust, and Sadness. They control Riley’s actions and store her memories as colored orbs. Her most important memories are those that are brightest.

If I were Riley, the control center of my brain would constantly play music, and every important memory would have its own theme song.

One of my favorite memories of my son Cullen is when he was a toddler. I vividly remember him joyfully playing on his push-and-ride toy while belting out the chorus to Dobie Gray’s “Drift Away.”

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Cullen was a bright old soul at 3 years old, and most importantly, he was healthy. I was blissfully unaware that five years later, he would be diagnosed with idiopathic pulmonary arterial hypertension (PAH) and receive a heart and double-lung transplant at age 14. Was it coincidence or foretelling that Cullen’s first favorite song is about how music can help people cope with stress in life?

At first, I thought the music died the day Cullen was diagnosed. But it has lived on to provide a positive way for him and our family to feel our emotions, deal with them, and express them.

Thinking about those long nights I stayed up with Cullen when PAH was making it hard for him to sleep can trigger my post-traumatic stress. I control it by remembering the lullabies I sang to him and the songs we listened to that helped comfort us during those long, worrisome nights.

When Cullen was too old for lullabies, I took him on long drives and let him control the radio. We still enjoy this practice, except now he wears AirPods connected to his cellphone, and I select what plays through the car’s speakers.

Music is also Cullen’s favorite way of cheering me up. When he senses I’m upset or in a bad mood, he forces me to listen to Seal’s “Kiss From a Rose,” Thin Lizzy’s “The Boys Are Back in Town,” or the Beatles’ “Hey Jude,” which are songs I detest. I don’t have anything against the artists or the name Jude, I just find the repetitive lyrics annoying. But when Cullen sings along at the top of his lungs using made-up words, I can’t help but crack a smile and give in to laughter.

Speaking of laughter, when Cullen was in the hospital recovering from his transplant, my husband, Brian, frequently played “Breakaway” by Big Pig. Brian would sing along and bop his head to the rhythm, prompting weird glances from the nurse. Many of you will recognize “Breakaway” as the theme song from “Bill & Ted’s Excellent Adventure.”

When Cullen was 10 months old, I carried him into a stuffed animal store and walked out with him hugging a fluffy pig that he selected. This one stuffed pig somehow grew into a collection of pig-themed items that Cullen added to throughout his childhood. Because of that, I assumed Brian was playing “Breakaway” for the pig reference in the band’s name. I recently brought it up with Brian, and I was surprised to learn that it meant quite a bit more.

While I was familiar with the movie, I never really paid attention to the song’s lyrics. The first verse is heartbreaking when you think about Cullen’s PAH struggle:

“All my life I wanted to fly
Like the birds that you see way up in the sky
Making circles in the morning sun
Flying high in the sky till the day is done
(I can’t break away)
Like a child in his fantasy
Punching holes in the walls of reality
All my life I wanted to fly
But I don’t have the wings and I wonder why
(I can’t breakaway).”

With tears in his eyes, Brian explained that the first verse epitomized so much of what Cullen had been going through. PAH had denied Cullen much of his childhood, and no matter how closely we followed his medical regimen, the future had seemed so grim. He was PHighting his destiny and longing for freedom!

Thankfully, the second verse — and Bill and Ted — offer hope:

“Whoa, well mama told me
When I was young
Stand tall girl
You’re No. 1
(she said)
You can’t be what you wanna be
But you can shake the course of your destiny.”

This verse reminds us that we don’t always get the life we want. Even when horrible things happen to good people, we can PHight to change our destiny. Keep striving for a better life. Don’t give up!

Cullen fought PAH hard for six years, and he has beaten formidable odds post-transplant for seven.

Brian found inspiration in the song and the movie. If Bill and Ted can beat the odds, Cullen could too, and he has!

Whether it’s PAH, transplant, or some other adversity, whatever you are going through, don’t let the music die. Let it live and positively influence the core memories you are making.

Note: Pulmonary Hypertension 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 Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.