Writer, artist, and vocalist Celestial Jones has made Visual Snow Syndrome (VSS)—a condition she shares with her mother—a central part of her creative and personal journey. From her earliest memories, VSS has shaped not only how she sees and experiences her surroundings but also how it shapes her work. In a recent conversation with the Visual Snow Initiative, Celestial reflected on life with VSS, describing how it inspires her artistry, drives her to help make a difference, and fosters connections with people who have impaired vision or experience the world differently.
Read her Q&A below.
When did you first notice symptoms of Visual Snow Syndrome (VSS)?
“A story my mother often told is that when I was a child, she came home from work one day to find me beneath the sofa crying. I was young, maybe around three, distressed, and telling my older sister that there were ‘ants’ everywhere. My older sister was confused and told my mother she didn’t see any ants, and that’s when my mother realized I had eyes like hers.
I have maybe one or two memories where my vision is ‘clear.’ The rest of them resemble my current sight, with Visual Snow Syndrome being an overlay that never comes off.”
How has VSS has impacted your daily life, perspective, and sense of identity?
“There were days growing up where I didn’t mind it. Sometimes the visual distortions were even entertaining. Other days, I was sure I’d go blind. I remember being about eight and searching online for ‘static vision’ and finding only one or two vague web pages. I asked my mom what it was, and she didn’t know either.
My perspective now is more grounded, but I still reflect on it often. The worries are more adult now: what if it gets worse and I can’t drive? What if it affects my work? Recently, a platform I use professionally updated its visual interface, and I could barely navigate it. I wasn’t the only one struggling, but Visual Snow Syndrome made adapting harder.
Having VSS has made me very aware of accessibility. When you walk through a hallway or open a website, you might not think about how design affects someone who sees differently. Because I do, I’ve become someone who fights for accessibility. I’m currently collaborating with the creator of that platform to make an update that’s more visually accessible, not just for me but for others with vision issues.”
What is something you wish more people understood about VSS?
“I was recently told by an organization I work with that I need to ‘fix’ my condition, as if I could make something incurable disappear by choosing to.
That experience captures the dismissive attitudes people with VSS, and disabilities in general, often face: that we’re somehow a problem to be solved rather than people navigating life with a condition we didn’t ask for.
I wish more people understood that Visual Snow Syndrome exists on a spectrum. For some, it’s mild. For others, it’s debilitating. It can impact daily life, work, and well-being, and often coexists with other conditions. There’s room for every experience within the VSS community. Each person’s reality is unique, and that diversity deserves understanding and respect.”
How has sharing this condition with your mother influenced your outlook and experiences?
“I’m grateful I grew up knowing someone else saw the world like I do. My mother has VSS too, though we didn’t have a name for it then. I’d tell my siblings I saw ‘TV static’ or ‘dots everywhere,’ trying to explain it.
My parents are tough — no hand-holding — so I learned to push through challenges. I told my mom once about my worries, and she reminded me that she’s lived with it longer than I have. That helped me put things into perspective.
As a kid, I sometimes found comfort in it. If I couldn’t sleep, I’d watch the flickering static behind my eyelids like a game: counting sheep, but different. Other times, I’d be scared of it getting worse. But both sides of that experience shaped me into someone who’s accepted VSS for what it is, not what I wish it wasn’t.
Having a family who shares this experience showed me how powerful it is to connect with others who understand.”
How has living with VSS inspired your work as an artist, writer, and vocalist?
“I consider myself a little weird, in the best way. Visual Snow Syndrome is one of the things that helped me embrace being different. It’s not going away, and it’s not something everyone relates to.
That same perspective flows into my art and music. I’ve learned to create without worrying about who it’s for. The people meant to connect with it will. I’ve become more comfortable in my artistry: not trying to hide what unsettles me but finding beauty and peace in what makes me unique.”
How do you use your creativity both as a personal outlet and as a way to inspire change?
“Let’s say I’m trying to convince you that someone is a great singer. I could just tell you, ‘They have a beautiful voice.’ Or I could describe it as sounding like the sun breathing rays into sound, which would make you feel it more. I could tell you about a cause or I could make you feel it.
‘No One’s There’ was an art piece I made exploring death and the afterlife as a state of calling out for someone to answer, hoping someone’s there but not realizing you’re alone. It was a small blue mirror box that chirped. People stopped, listened, and some cried.
That’s what art can do, reach people emotionally. It’s one of the best ways to raise awareness. Next year, I’ll be exploring fashion as another medium.”
What inspired you to collaborate with the Visual Snow Initiative (VSI) and speak out about VSS?
“In some alternate reality, little Celestial opens a textbook and says, ‘Oh, so that’s what this is.’ The doctor gives it a name. A few classmates have heard of it. Maybe there’s something to make it more manageable. Maybe she just grew up not being afraid of it.
That’s the future I want to help build, one where VSS is understood, diagnosable, treatable, and not so isolating.
When I found the Visual Snow Initiative (VSI), I knew I wanted to contribute to that mission: raising awareness, supporting research, and helping others feel seen.
Medical innovation often begins with people doing good they’ll never personally benefit from, planting trees whose shade others will enjoy. I want to be part of that forest.”
How do you hope your story will support or encourage others in the VSS community?
“I like to think of myself as a living billboard for VSS. I’ve probably met people who have it without realizing. The best way forward is to keep talking about it. If you’re reading this and you have VSS, share your story. The more voices we have, the more progress we can make.”
What advice would you give to someone newly diagnosed with VSS?
“My journey has been about acceptance, finding peace with what I can and can’t do. There are things VSS may limit, but it also brings new perspectives and possibilities. My advice is to embrace what you can do. There are so many of us out here finding our own ways to thrive.”
In addition to the Visual Snow Initiative (VSI), are there any other helpful resources, communities, practices, or upcoming projects that you would like to share?
“Volunteering with Vibrant Works, a local organization that empowers the blind and visually impaired, has been incredibly rewarding. For anyone with VSS looking for community, I also recommend connecting with organizations for the blind and visually impaired.
I’ve taught living skills classes, showing people how to cook or navigate spaces safely. I’ve also met others with vision conditions, and we’ve shared experiences about the challenges of being misunderstood by doctors.
I’m planning a charity fashion show in 2026. Each piece will represent a different condition [that affects vision], including Visual Snow Syndrome.
You can follow updates on my website or social media. I’m excited to keep creating, advocating, and sharing stories that help others see the beauty in difference.”