Nwando Ebizie is a multidisciplinary artist who has spent years creating music, performances, and immersive art that reflect her unique way of experiencing the world. What many people don’t know is that her creative path has been deeply shaped by Visual Snow Syndrome (VSS).
In a recent Q&A with the Visual Snow Initiative, Nwando shared her personal story: how she discovered she had VSS, how it’s affected her life, and how she’s using her art to help others feel seen, heard, and less alone.
Read her Q&A below.
Can you share a bit about yourself and the journey that brought you to where you are today?
“I’m a multidisciplinary artist. I make all kinds of works, from music to photography to immersive operatic experiences. I am led by research, which includes ritual practice, accessibility, and combining science and art.”
When did you first notice your Visual Snow Syndrome (VSS) symptoms?
“For as long as I can remember, I’ve seen the world in a way that is apparently strange, not the accepted norm, but I only had confirmation that I was experiencing a different reality from others in 2015. One night, the moon was full and low, and I was driving over a bridge in the car with my parents. I casually mentioned how hazy the lights looked that night. They were concerned I had early-onset cataracts, so I went to the optician.
One trip to the optician later confirmed that there was nothing wrong with my eyes, which in fact were near 20/20 vision. But further conversations with my other friends confirmed that what I perceived out there in the world was very different from what they did.”
How did you come to realize your symptoms were VSS, and what was your diagnostic process like?
“So I began talking more and more to people. I remember one friend suggested I had glitter in my eyes. Another just flat-out refused to accept what I described. I had been suffering at the time from depression, anxiety, depersonalisation, and derealisation. I had been given antidepressants by my GP, which seemed to make some of my symptoms worse.
I did try to talk to the GP about the VSS symptoms, but it just seemed to confuse him. He kind of said, ‘slow down, one problem at a time.’ So I just left it and left the appointment with antidepressants.
I took a break from work but really started doing other work. I had received an arts bursary and used the money to research my symptoms. I found out about Palinopsia and eventually found out about Visual Snow Syndrome.
I met with Dr. Goadsby and Dr. Puledda to learn more about it. Dr. Puledda ended up being part of a series of projects exploring sensory perception that I put on at museums and art galleries in London. As part of this work, I tried to find out about other people throughout history who might have had VSS. I never really found concrete evidence of this (I was mostly looking at artists and writers), but I did find out a lot about sensory perception. I went on to collaborate (on art/science projects) with a series of neuroscientists, including Dr. Bracey at UCL, Professor Scott at UCL, and Dr. Cooper at the University of Melbourne.”
How have you shared your experience with VSS with family, friends, or collaborators, and how have they responded?
“Over the past seven years, I’ve communicated my VSS experience with friends, family, and about 20,000 people around the world — in exhibitions I’ve created about it in Singapore, Melbourne, London, Manchester, and online — through a music video I created, an Instagram filter, and various talks in Amsterdam, Folkestone, and online.
During my exhibitions, I always try to create space for people to discuss their own findings about VSS. At the exhibition I did during the Brighton Festival, we surveyed people, and around 10% of those surveyed said they realised they had VSS from attending the piece. I’ve had so many fascinating discussions with people about their perception and their symptoms. My family has come to see the exhibitions I’ve made. In one of them, during a talk, one aunt said that she also experiences some VSS symptoms, and that her mother (my grandmother) did as well.
It has been an amazing way to connect with people — and most importantly for me, to help people see that they are not alone.”
When meeting others in person, do you typically share that you have VSS, and what influences that choice?
“I think it is really important to normalise neurodiversity, so I talk about this often. I think it’s important for people to recognise that we are all on a neurodiverse spectrum. It helps those of us with VSS to not feel like we are broken or strange. And it helps others be more accepting and make adaptations. For example, I have an access rider for everybody I work with that details the symptoms and the adaptations I need (e.g. no overhead strip lighting in areas I’m working for a long period of time).
I hope in providing this information I not only help myself, but make it easier for others to ask for adaptations — and so improve their lives!”
In what ways has VSS impacted your lifestyle or creativity, and is there anything that helps you manage your symptoms?
“A massive impact. It is a big part of the reason I prefer to work from home if possible, ruling out many jobs and career paths. It has had an impact on the way I socialise and the way I navigate the world, including places I won’t go to or risk feeling unwell. I have definitely lost work due to the adaptations I ask for. On the positive side, it has made me see the world in a different way from some people. It has made me more accepting of others and made me better at advocating for myself and others.
When my partner moved in with me, he remarked on the ‘crepuscular’ environment! I need the lights low, I need to remember to rest. I probably need a lot more sleep than I get!”
What responses have you received from audiences engaging with your VSS-inspired work?
“One of the most amazing sensory experiences I’ve had. It is beautiful, calming and exciting at the same time.”
Others said my work helped them feel safe and understood. One audience member wrote:
“Really out of the ordinary. Feel like I am somewhere else mentally. Good to remember that other realities exist, that we are not alone and that we can share and enjoy what we have with others.”
Another said: “The music and imagery were so exhilarating. It draws you in, body and mind.”
From music to visuals to carefully designed sensory spaces, my work invites people into a shared experience and helps others discover that they might also have VSS.
Is there anything else you would like to share with the VSS community?
“It can be frustrating, lonely, and painful having VSS. I think it is important to know you are not alone and that you are not broken. Focus on the things you can do to make yourself feel better, more comfortable, ask for adaptations and keep reaching out and talking about your experiences.”
