Olivia’s Journey: Music, Migraines, and NVLD Advocacy

When I first met Olivia, she radiated creativity and openness. As one of the NVLD Project’s social ambassadors, she’s passionate about raising awareness and building community for people living with Nonverbal Learning Disability (NVLD). We sat down to talk about her life, her music, her health challenges, and why she chose to step into advocacy.

Olivia introduced herself simply:

“I’m Olivia. I’m 30 years old and from Illinois.”

But her story is anything but simple. She’s a singer-songwriter who’s been in love with music since childhood.

“I’ve been writing songs for years. I picked up the guitar about a decade ago—not to become an expert, but so I could get the music from my head into the world. Recently, I’ve started learning piano, too.”

Music isn’t her only defining thread. Olivia also lives with NVLD, chronic abdominal migraines, and the lingering effects of low muscle tone diagnosed when she was just nine months old. The NVLD Project doesn’t officially list low muscle tone as a symptom due to a lack of research, but for Olivia, it was one of her earliest indicators.

She explained that her abdominal migraines began in childhood. They’re a rare form of migraine that manifests in the stomach rather than the head—episodes that can turn suddenly from feeling fine to needing IV fluids at the hospital.

“They say most kids grow out of it, but I didn’t. Later, I started getting traditional migraines in high school, which sent me for multiple MRIs. Nothing showed up, but the pain was real.”

I could relate—my own migraines began in college around the same time I was diagnosed with NVLD. Neither of us has seen enough research linking the two, but the overlap is hard to ignore.

Learning the Name for Her Differences

Olivia’s diagnosis story is unusual. She was diagnosed at nine years old, but her parents didn’t tell her until she was fourteen. At first, this might sound strange, but her parents’ reasoning made sense.

“It was the early 2000s—there wasn’t much information out there, and they were told I had a mild case. They worried I might tell friends who would look it up online and think I was something I wasn’t. I’d already been bullied, so they wanted to wait until the time felt right.”

The moment of discovery came unexpectedly. During volleyball training before high school, Olivia found herself reflecting on past interactions—things that didn’t quite make sense at the time. One memory was telling classmates she was on Vyvanse without knowing what condition it was for. Another was repeatedly asking her mom questions because she still didn’t understand the answer.

“I finally asked my parents directly: ‘What do I have?’ My mom said, ‘Nonverbal Learning Disability.’ They spent an hour telling me about my symptoms and how they’d led to the diagnosis. They admitted they’d planned to tell me eventually—I’d just beat them to it.”

For Olivia, the label brought clarity. It explained her struggles with motor skills, spatial awareness, and processing speed. Like me, she found that knowing the name gave her a new lens on her past.

Turning Experience into Advocacy

During the pandemic, Olivia decided to revisit a book she’d been working on since she was twenty-two—a coming-of-age memoir about growing up with NVLD.

“I kept overthinking and rewriting, so I thought maybe blogging would be easier. That’s how I found the NVLD Project. I reached out, we had a Zoom call, and they invited me to write for them. That’s how I became an ambassador.”

The blogs gave her a way to share her story without the pressure of completing a full manuscript. Writing about NVLD also reconnected her with her creative side in a different medium from music.

The Representation Gap

Olivia and I share a frustration: the lack of NVLD representation in media.

“On TV, if a character has a learning disability, ninety percent of the time it’s dyslexia—maybe dyscalculia once in a while. Dyslexia is important to highlight, but there are so many other conditions that deserve visibility. I’d love to create a show one day about growing up with NVLD. Representation matters, because people can’t understand what they’ve never seen.”

She gave the example of a former coworker with dyslexia asking her to read an address for him. Because she’d seen portrayals of dyslexia on TV, she understood his request without judgment.

“That’s the kind of empathy NVLD needs. Right now, most people hear ‘nonverbal learning disability’ and say, ‘But you can talk.’ They don’t get that it’s about nonverbal cues, spatial reasoning, and so much more.”

The name itself is another point of debate. Some experts have floated alternatives like “visual-spatial learning disorder,” but Olivia and I both agree that any new term needs to reflect the full range of symptoms without narrowing public perception.

Moving Forward

Our conversation circled back to the spectrum-like nature of NVLD. For some, symptoms are mild; for others, they’re severe enough to make tasks like driving impossible. Olivia’s journey shows how personal experience, creative passion, and advocacy can intersect—how one person’s story can ripple outward to make others feel seen.

For her, music remains the heartbeat.

“If my songs make even one person feel understood or less alone, that’s all that matters. But if I can also open doors for more NVLD stories in film and TV, that would be a dream come true.”