Living with a chronic illness means carrying two stories at once: the one written in medical charts, and the one written everywhere else. The appointments, the pain, the limitations, they shape us, yes. But they don’t erase the parts of life that continue in the background. The things we have to do, choose to do, get to do, or simply love to do. The things that remind us we’re still whole.
The everything in between. The pieces of life that unfolded alongside the illness, not in spite of it. The parts that kept us grounded, connected, and human when our bodies felt unpredictable.
For me, one of the first and strongest threads was, and is, music.
Music was the one place my illness couldn’t follow me.
Music wasn’t just a hobby; it was a lifeline. It gave me a place to belong when my body felt foreign. It gave me confidence when illness made everything else feel uncertain. It reminded me that even when pain demanded attention, joy could still take up space too.
And that’s why I’m sharing this. Not just to tell a story, but to offer a reminder: we are more than what hurts. We are shaped by the things that carried us through.
This is my first chapter of that truth.
The Soundtrack That Raised Me
Growing up with Juvenile Idiopathic Arthritis (JIA) shaped so much of my early life. But it wasn’t the whole story. There were other forces shaping me just as deeply, and one of the biggest was music.
Before I ever understood what a chronic illness was, I understood harmony.
Before I learned the language of pain, I learned the language of sound.
I grew up singing with my father. He was a musician through and through. The kind of man who could pick up almost any instrument and make it feel like an extension of himself. Guitar, bass, keyboards, whatever was around. Him and his twin brother actually. And yes, they both sang country rock. Black men singing country rock long before it was cool, recognized or celebrated. They didn’t care about fitting into anyone’s expectations. They cared about the music. My father was often referred to as the other Charlie Pride or what today we would call Charlie Pride 2.0.
When my parents bought our first house, the basement became my dad’s world, his kingdom. Keyboards lined up against the wall. Guitars on stands. A bass leaning in the corner. Amps humming. Microphones ready. Speakers that could shake the floorboards. It wasn’t a basement. It was a studio, a sanctuary, a classroom, and a stage all at once.
My dad and I spent hours down there, just the two of us, singing until our voices were tired and our cheeks hurt from laughing. He taught me how to hear a song from the inside out. How to feel the rhythm in my chest, how to trust my voice, how to let myself take up space in a room. We were the family party entertainment, the built‑in band, the soundtrack to birthdays, holidays, and random Saturday nights.
Those moments shaped me as much as any medical milestone ever did. Music gave me a place where my body wasn’t the story. My voice was.
Music was the backdrop of my entire childhood. It filled every corner of our home, every weekend, every car ride, every memory. Before I ever had a diagnosis, I had a soundtrack.
The Rhythm of Our Family
Some of my favorite memories were Sunday mornings. My brother and I would wake up to music and come downstairs to find my parents dancing in the living room. Real 1950s style, full of spins and steps and joy. Fats Domino, Chubby Checker, Martha & the Vandellas, Aretha Franklin. They moved like they’d been dancing together their whole lives. Maybe they had. We’d sit on the stairs or the couch, watching them with smiles and laughter, soaking in the love and rhythm that filled the room.
As the years went on, the dancing changed right along with the music. One morning we came downstairs to find my parents doing the Bump, to Evelyn Champagne King. I’m talking full commitment, hips and all. Then, before we knew it, the living room had turned into a reggae party. They were good, too. So good that my brother and I got bumped and spun around the room right along with them. The soundtrack shifted, but the joy never did.
Even in the hardest seasons, there was always a song waiting for me.
And then there was my dad’s eight‑track player in his 18‑wheeler. Yes, I said eight‑track. I know some of you have no idea what I’m talking about. This was the era before Bluetooth, before CDs, before cassettes. You slid this big chunky cartridge into the player and hoped it didn’t eat your favorite song. His truck was filled with Gladys Knight & the Pips, Al Green, Smokey Robinson and whatever else he loved at the time. Even on the road, music followed him.
There was always music in my home. Always.
It shaped me just as much as any medical milestone ever did. It gave me confidence, connection, and a sense of identity that had nothing to do with illness. It reminded me that I was more than a diagnosis. I was a voice, a harmony, a daughter raised in rhythm.
High School: Finding My Own Voice
By the time I reached high school, music wasn’t just something I grew up with. It was something I chose. Something I stepped into. Something that felt like mine.
A few of my friends and I would sneak into the music room whenever we could. One friend played piano beautifully, and the rest of us would gather around and sing harmony. Diana Ross & the Supremes, “Come See About Me,” and other old school songs that let us blend our voices and feel like we were creating something bigger than ourselves. We took choir and music lessons, not because we had to, but because it felt like home.
Those afternoons in the music room changed everything. They led to two memorable experiences in my life.
A guy from another school heard of me singing and asked if I’d be willing to be the lead vocalist in a band he was putting together. I said yes. I didn’t even hesitate. And suddenly I was rehearsing with musicians, learning arrangements, and stepping into a role I never imagined for myself.
Some of our rehearsals were in my basement, with my dad listening from the sidelines, offering tips, nodding along, or giving that little smile that said, “You’ve got this.” It was surreal. The same basement where he taught me to sing was now the place where I was becoming a performer in my own right.
And then came the moment none of us saw coming.
Our music teacher went to the school board, quietly, without telling us, and asked if my two “backup” singers and I could join the Toronto-area high school bands traveling to New York to perform. These were instrumental bands that normally played show tunes, not vocal groups. It was completely out of the ordinary.
But the board said yes.
So there I was, standing on a stage in several New York City high schools, singing my heart out with my friends beside me. The lights were bright, the auditorium full, and for those minutes, those precious minutes, nothing else mattered. Not my leg. Not my diagnosis. Not the self-consciousness that sometimes crept in.
Just the music. Just the moment. Just me.
Why Music Comes First
Music was the first place where I felt completely free. Where my voice mattered more than my JIA, where joy lived louder than pain, where I could step into a moment and feel whole. It carried me through childhood, lifted me through high school, and gave me a sense of self that illness could never take away.
That’s why I’m starting my Everything In Between experience here, with the soundtrack that raised me, and the memories that shaped me. The parts of my life that remind me I have always been more than a medical story.
Illness shaped my life, but music shaped my spirit.
Music was my escape, my grounding, my reminder that life held more than pain. What’s yours? Share something that brings you joy or helps you step outside your illness, even for a moment. Your story might be exactly what someone else needs to hear.