Juj – The Quiet Shape of Hope in Every Note
I remember the first time I realized hope wasn’t loud. It didn’t arrive like a miracle or a sudden cure. It came quietly, almost unnoticed, in the spaces where everything else had been stripped away.
For ten years, illness had shaped the edges of my life. It started when I was just a kid growing up near Philadelphia—when something as simple as not feeling well slowly turned into something no one could explain. At first, it was GI issues, strange symptoms that didn’t seem connected. Then came the insomnia. I was thirteen, lying awake night after night, trying everything just to sleep. Nothing worked for long. Then came the pain—muscle aches, stiffness, rashes—and still, no real answers.
By high school, my world had started to unravel. I couldn’t retain information the way I used to. I would pass out randomly—at home, in public, even in airports. My life began shrinking in ways I didn’t understand yet. And then, at seventeen, after years of searching, I finally had a name for what was happening: Lyme disease, along with Bartonella and Babesia.
I wish that had been the turning point. It wasn’t.
There were periods where things felt slightly better, where I could almost imagine a version of life that looked normal—but it never lasted. In 2020, everything crashed again. I was in and out of hospitals, passing out frequently, my body no longer cooperating in ways I could predict. That’s when I was diagnosed with POTS. Around the same time, my insomnia—already unbearable—became something else entirely. Days without sleep. Not hours—days. And somehow, my body wouldn’t even crash afterward. It just kept going, exhausted but awake. It’s hard to explain what that does to a person.
Then came the seizures. The confusion, the blackouts, the tremors I couldn’t control. Eventually, I was diagnosed with temporal frontal lobe epilepsy. Another label. Another layer. But by then, I had already learned that answers didn’t always mean relief.
There were long stretches where I couldn’t get out of bed. Times when I needed help to do the most basic things—eating, showering, getting to appointments. I had to rely on the people around me in ways I never expected. My sister stepping in to speak for me when I didn’t have the strength. My mom taking care of me when I couldn’t take care of myself. My boyfriend being the rock I needed the past 5 years with no questions ever asked. Friends who became part of my support system, helping me hold onto some version of independence when my body wouldn’t allow it.
And through all of it, there was music.
It never left me, even when everything else did. I found ways to keep going—building a small social media business so I could work from home, pushing myself to perform when I could, even knowing what it might cost me afterward. There were nights I made it through a show only to end up with a paramedic or in the hospital. But for those moments on stage, I felt like myself again. Not just a patient. Not just someone surviving.
Still someone becoming.
My LymeLight treatment grant was one of the biggest blessings I’ve encountered in my Lyme journey. Not only did it give me hope and options for treatment that I hadn’t tried before but it also gave me a community that made me feel like I could do this and get through the ups and downs Lyme brings. They’ve embraced my creativity and allowed me to use my passion for music to express myself and raise awareness for Lyme.
This past year, something shifted—just slightly, but enough to notice. I found treatments that started to help, even if only a little. I tried things I couldn’t always afford—SOT therapy, IV treatments, medications that came with impossible price tags—and for the first time in a long time, I felt a glimpse of what “better” might look like. Not cured. Not fixed. But moving.
Hope, I’ve learned, isn’t about everything suddenly changing. It’s about the small openings—the moments where the weight lifts just enough for you to breathe differently. It’s about choosing to keep investing in a life that hasn’t been easy to live.
I still have days where I can’t get out of bed. Nights where sleep doesn’t come. Moments where everything feels uncertain again. But I also have this: the knowledge that I’ve made it through every version of this so far.
And that has to mean something.
Because even now, even here, I’m still reaching for a life that feels like mine.