An interview with… Me! Your Author
Today I was preparing a survey with interview questions for folks who live with Visual Snow Syndrome and realized that maybe I should answer the same questions for this blog! To let readers know a bit about who is writing this thing. Let’s DO IT.
Let’s start with the basics:
The name you would like used: Liz Brent-Maldonado
Pronouns? She/her/hers
How old are you? Thirty-six years old
Where do you currently live? San Francisco, CA
What else would you like me (or potential readers) to know about you as a person not related to Visual Snow Syndrome?
I’m trying to think of something that’s not written on my main website page or social media… One thing is that I’m an introverted person. I can go out and get things done in the world and talk to people, and I love teaching, but in short sprints. I do best working at home on my own projects. I like solitude a lot. Despite having had an online presence since I was a preteen, I struggle with social media and knowing how to “present myself.” At the same time, I am a very driven person. I am driven to write and make art and teach. But I have a sense of humor, too, and try to keep things lighthearted. :p
Regarding your Visual Snow Syndrome:
When did you first notice that something was going on with your vision?
When I was about eight or nine (I honestly can’t remember the exact age), I told my mom that I was seeing colors in the trees. I was seeing shades of red and orange moving over and around bright green trees in summer. When my mom expressed confusion and surprise, it was the first time I had confirmation that I was seeing something different from what other people saw. And, I was seeing it all the time. Even when I closed my eyes.
What visual symptoms are the most noticeable for you?
My entire life I’ve seen visual glitter, colorful shimmering waves, and what I call “sparkle vision” or the “sparkle field,” covering my entire field of vision. This can show up as a glow around the edges of things as well. I see glowing, silhouette-like after images of people or things when I look at them and then look away. Or if they move. These after images are very noticeable against a solid-colored background like a blue sky or white wall. I also often see halos or spears of light around light sources. All these symptoms are much more pronounced at night or in a dark environment.
What nonvisual symptoms are the most noticeable for you?
Anxiety, depression, and brain fog. I also have occasional migraines and insomnia, and really random tinnitus.
What was your initial response to your symptoms?
When I was a child I was drawn to stories about magic and superpowers. I thought I must have a superpower! But the problem is that it didn’t seem to have a use - a way to use it to save the world, etc. I kept hoping that I was seeing a clue to other dimensions, or invisible creatures, or something I could harness and collect like the spirit bombs in DragonballZ! Or that I was seeing something like atoms, or other peoples’ emotions. But whenever I observed it carefully, it didn’t seem to correspond to anything or to be influenced by anything.
Most of the time, as I got older, I ignored it and tried to forget about it.
How and when did you first learn about “Visual Snow Syndrome” as a condition?
In 2015 I began writing autobiographical essays and my visual phenomenon stood out to me as something I should share and try to learn more about. From 2016-2018, I was in touch with scientists working on Tetrachromatic Vision, which was the closest thing I had found to what I see. When that led to a dead-end, I kept researching and eventually found the Visual Snow Initiative. That was when I realized that I had VSS because all of the known symptoms lined up, including nonvisual symptoms that I didn’t know could be included. Even after discovering the VSI, it took some time for the research to come out that this is a neurological condition, not a visual system condition.
Have you attempted to be formally diagnosed by a medical doctor or another professional expert?
Yes, I am currently in the process of a formal diagnosis through the University of California San Francisco and their Neurology Clinic.
Who is Number One on your personal support “team”? This could be family, friends, coworkers, mentors, counselors or therapists, your primary care doctor, or anyone at all who is supportive of you.
I can’t pick one. It really does take a Team. The main players are my husband, my parents, and my big brother. Even though no one in my family has this condition, they are always curious and supportive of how I am doing. I also have a core group of friends who I can talk to about anything and that really helps. And though I am not currently in therapy, I have had many helpful and wonderful therapists in my life. Yay, therapy! Professional mentors have also been key in my life.
Living with VSS:
What helps you the most when it comes to managing VSS day-to-day?
Ignoring it. This is the “superpower” I never realized I had until I started researching more about VSS and learning what it’s like for other people. But I think other people could learn how to ignore it as well. Meditation also helps immensely by giving me space in the day to let my brain and body unwind and process.
What is less challenging now than when you first experienced VSS?
Talking to other people about it. For most of my life, I very rarely shared what my daily visual experience is like because no one seemed to know what I was talking about. Finding out about the online community around VSS and the VSI has helped, and when I got more serious about writing a book about my experiences, that forced me to talk about it more. When you tell people you’re writing a book, they always want to know what it’s about!
What is something (or somethings) you are still learning to manage when it comes to your VSS symptoms? What is still challenging?
A challenge I run into now is when I focus too much on my symptoms, it actually gets worse. So writing the book has been slow because honestly, when I think too much about my VSS, my anxiety gets worse and I feel more scattered. Writing takes a lot of focus and also a lot of screen time. All of this can be difficult with VSS symptoms. And I hate having internal conversations like, “Is this an excuse to not work? Or am I actually struggling?” It can be difficult to tease out.
Also, an ongoing challenge is dealing with the healthcare system in the USA. Yes, this has an impact on my symptoms because it is SO STRESSFUL. I am lucky to currently have health insurance. But as an often-freelance-part-part-time person, it has been a nightmare to have it consistently as an adult.
If you were to have a guidebook for managing VSS, what is one thing you would absolutely want in that guidebook?
Encouragement and hope. “You’re not alone and this condition will not kill you or make you go blind.” There is a lot of hope out there, especially as more research is done.
What do you think the VSS community most needs to know or hear right now?
We need to be patient and kind. This is a hard thing to hear when folks are struggling with alarming new symptoms or labels like “disability” and “neurological condition,” which have negative connotations in our society, not to mention the label “disorder.” Scientific research is slow and needs time and money. We need to be patient and kind with ourselves and the professionals doing the work. I get very worried when I see medications and solutions being thrown around online. I hope people are being careful and thinking critically when they read unproven advice.
Is there any VSS research you’ve heard about that makes you very excited?
There was a paper that was just published about the commonality of “migraine as risk factor” across a spectrum of conditions (you can read it here). I find this kind of research exciting because it’s so helpful to see how many neurological conditions may be related and that research for VSS can assist with research for other perceptual disorders.
Is there anything about your story specifically, or about VSS in general, that isn’t being talked about? To put it another way, is there anything that you feel is missing from the conversation about VSS?
I want folks living with VSS to know that they already have “internal resources” for managing this condition. I believe that mindset and self-awareness can go a long way to living a full life even with a chronic, neurological condition. This doesn’t mean we should or will be happy all the time. The struggle is real. But we can find ways to enjoy our lives and be ourselves.
If you could go back in time, what would you tell yourself who is just noticing their VSS symptoms?
“You do have magical superpowers! The more you focus on sharing your experience and knowledge with others and less on your actual visual experience, the more magically helpful you will be.”
If there was a cure for VSS, would you take it?
No. I’ve lived this way my entire life and can’t imagine looking at the world without the sparkle, even if some of the other symptoms are difficult. I believe adjusting to life without VSS may be more difficult than living with it.
Anything else you would like me to know? Or any questions you have?
I would like folks to know that I am writing this blog, and the book I am working on, in an attempt to share more about what living with VSS is like, help others living with VSS by sharing what I have learned in my journey and studies of mindfulness, and inspire more VSS folks to do the same!
We need more narratives and conversations around neurological experiences of all kinds.
I still have a lot of questions about “what does it all mean?” and “will my book ever be published?”! But we’ll get there, one step at a time. :)
Thank you for reading!