Restoring Vision Loss - Is It Possible?
Vision loss might seem straightforward—simply the loss of vision. But let's break down the main parts of the vision pathway and see what it would take to regain vision when these systems break down. The pathway can be simply divided into two main components: (1) the eyes and (2) the brain. Here's a detailed breakdown of this pathway.
The eyes serve as information receivers and function as highly sophisticated signal processing modules. They capture complex patterns of light in the form of photons. Each photon carries different energetic signatures based on its color or wavelength, which activate light-sensitive chromophores. This activation induces a shape shift or protein conformational change in opsins. The specific molecule attached to an opsin determines which colors of light it will respond to. Humans and animals possess various collections of photoreceptors that receive and process light differently. The basic categories include cone photoreceptors, which detect intricate colors, and rod photoreceptors, which detect low levels of light, particularly in peripheral vision. This visual information undergoes processing at another layer in the retina, where it's spatially integrated by a collection of cells. Finally, this integrated information travels to the ganglion cells, which are neurons that send the preorganized signal to the brain for further processing.
The preprocessed information is sent to the occipital lobe part of the brain, where the light, dark, and color information is now taking shape into edges, lines, and shapes. This initial visual processing in the primary visual cortex (V1) begins to organize the raw visual data into meaningful patterns. As the signal progresses through the visual association areas (V2-V5), increasingly complex features are extracted and analyzed. Further down the visual processing pathway, the brain starts to add object recognition and depth perception which is tied to memory systems like the hippocampus and prefrontal cortex. These higher-order visual processing centers integrate current visual input with stored memories and experiences, allowing us to not just see objects but to recognize them, understand their significance, and place them in meaningful contexts. The dorsal ("where") and ventral ("what") visual streams work in parallel to process spatial relationships and object identification, respectively, creating our rich, meaningful visual experience of the world.
Visual pathway once the information leaves the retina and goes through the occipital lobe, V1.
All this to say, I am genuinely all for bionic implants in every way. Several of my friends have been closely following developments at Elon's Neuralink company (see Blindsight future clinical trial information) and strongly believe this represents the future of sensory augmentation technology. For this revolutionary approach to function effectively, we need to establish sophisticated connections between biological and technological systems and determine viable methods to replace damaged or lost ocular components with advanced prosthetics. These could include retinal prosthesis systems that are surgically implanted directly into the retina—similar to the groundbreaking Argus II system developed by Contingent Inc—which provides rudimentary vision to individuals with certain forms of blindness. Alternatively, we might explore noninvasive solutions such as specialized contact lenses that sit comfortably on the cornea, like those being pioneered by Mojo Vision with their innovative micro-LED technology that projects images directly onto the micro-LED. The truly transformative potential emerges when we consider how these sophisticated visual input devices might establish wireless connections with neural interface technologies like Neuralink, which could then transmit the processed visual information directly to appropriate regions of the brain in a format that neural circuits can effectively interpret and transform into conscious visual perception. While this integration presents enormous technical challenges, the possibilities it suggests are nothing short of remarkable.
And who's to say, whether this information feeding my brain wouldn't be altered or curated by the Neuralink as a propaganda tool to alter my reality? The implications of such technology extend far beyond mere vision restoration—they reach into the domain of cognitive autonomy and perceived reality. What if it was used to spoonfeed me every information and every propaganda mind control content without needing me to know or to consent to? What if subtle manipulations of visual input could gradually reshape my beliefs, preferences, or political views? The philosophical questions about authentic experience versus manufactured perception become critically important in this context. And will this happen in my lifetime? Seems like a lot would have to work very well together for it to happen. The technical hurdles are enormous—from creating biocompatible interfaces that don't degrade over time to developing algorithms sophisticated enough to translate digital signals into meaningful neural activity patterns. The regulatory pathways and ethical considerations alone could delay implementation for decades. But I dare you to give me my vision back and I'll be happy to succumb my mind to whatever alternative reality you give me. When faced with the profound darkness of blindness, many might willingly accept the theoretical risks of manipulation for the tangible benefit of seeing a loved one's face again or navigating the world independently.
touch my arm to engage with me
My vision loss is a painful experience that is hard for me to share. Sharing requires me to admit that I am a patient, and there is something heavy about being a patient. I am not a stranger to the healthcare system, nor being admitted to the hospital, nor navigating through it. But when my brother had brain cancer and my mother, sisters, and I had to coordinate our family dynamics to provide adequate care for him, it made me witness another level of patients in the hospital. Hence, my vision loss is nothing compared to losing my brother to cancer. By no means is comparing my vision loss to his cancer comparable. It’s different. But when confronted by friends and family who are curious and want to know how my vision is going and how they can help, I feel shame. The shame of being an impostor. I can still see, but it’s limited. I can barely describe what I can’t see, and there are times when different lighting with or without clouds can change the same scenery instantly. My vision is limited, and if I didn’t see it, then how do I let others know that I missed it? It is hard to identify the missing information until someone points it out, and then my typical response would be “no, I don’t see it”. When you are short-sighted by an experience or object, it is somewhat blissful until you realize you have missed it.
The sadness lies in finding out what you missed and living in a reality where you are a patient. The biggest hurdle and source of anxiety is being in social situations. Every moment a new person walks into a room, you don’t know if that person is your friend or not. Or even when you are meeting new people, you cannot read the social cues to determine whether the person talking is addressing you or someone else, or whether they are still talking to you. Initiating and engaging in conversation that used to be easy is now as foreign as visiting a new country. So when I cannot engage in conversation, I would rather listen to my surroundings and feel the air around me. I’m sensitive to smells and sounds, so I spend more time sitting still to experience and enjoy the vibe. Hence, loud areas with a variety of noises make it hard to engage and hone in on a conversation. It’s because when people speak to each other, they engage through eye contact and are constantly reading facial cues for whether the person is excited and interested in the topic, I can’t do that. Without my eyes, I need people to engage with me through touching my shoulder or arm to let me know which side you’re talking from and that you’re talking to me. Even though I’m an extrovert, navigating this new world is exhausting, hence this began a creative endeavor to put together instructions, a manual, and/or tools to help other folks know how to engage and help me. So I’ve made a list for my friends so they know how to help me, and maybe it will help others in this journey.
Touch my arm to let me know you're speaking to me.
When giving directions, grab my hand and point it towards the direction while explaining to me how to get there or where it is. Verbally explain things step by step if you’re going through it with a kid, which helps me map it out in my mind.
When I’m out socializing, I ask that I be with you most of the time. I would prefer not to be left alone or with strangers. If you need to leave me, please leave me in a spot where I won’t need to engage with people. I cannot sense danger as easily, and being left alone with a stranger triggers a lot of anxiety for me.
I’m okay following you around, you don’t have to explain everything to me. But it helps me understand where things are, so I can create a mental map of everything.
If I am at an event where I might know a few folks, then it is helpful for me to know who is here and coming in.
I’m happy to meet folks and engage in conversation, and as long as I’m near you, I don’t have to be part of every conversation you’re having and vice versa. But I would appreciate being checked in during a conversation, maybe when you feel we need to transition, so I know you’re near. I can’t sense if you’re near, and that triggers anxiety for me.
Finally, I’m not sad that I’m losing my vision. But it’s disheartening to lose my autonomy (to understand this, I recommend reading “The Country of the Blind”. I don’t want to depend on you for every single thing, especially when I used to be able to do it myself before. But that is just a part of me that I have to accept and slowly turn that unique perspective into a creative endeavor.
Part 2: Developing Retinal organoids
I got a chance to share my progress on developing retinal organoids on Rare Disease Day at UCSF on February 6, 2024. The entire day was filled with amazing scientists, entrepreneurs, and folks working at nonprofits to help connect patients with treatments. I got to talk about my personal patient journey in developing a model for my rare disease, which is an intronic mutation in the EYS genome.
I chose to talk about my personal experience around finding a grant and seeking opportunities to model my disease, demonstrating that we are able to grow retinal organoids with late-onset retinitis pigmentosa, and extending the patient journey in finding a treatment and balancing day-to-day care. Below is the link to the talk and my talk starts at 54 minutes.
Listening to Loss
I've dealt with two losses about a month apart. It makes it hard not to think there's something divine about our experiences—that life isn't just a mathematical collection of deterministic and random events. Academia has deeply ingrained in me the scientific method, teaching me to develop tools in search of well-supported theories about how the world works, always within comfortable confidence intervals. Yet the more deeply we explore our world and universe, the more we realize our tools are merely blunt instruments, feebly attempting to capture the wealth of invisible cosmic forces.
How can we possibly find words to describe such profound and deeply personal events in our lives? In our quest for understanding and healing, we often turn first to the rational mind, attempting to process our wounds, grief, and loss through careful reasoning and analysis. We find ourselves desperately trying to make sense of what has happened, focusing intensely on the practical details and logistics, perhaps even entertaining futile thoughts about reversing senescence. Yet we discover, sometimes painfully, that even the most rigorous logical analysis cannot bring peace to an inquisitive mind that must, by necessity, eventually yield its carefully controlled mental territory to the raw power of emotions and feelings. This fundamental transition from thinking to feeling seems particularly daunting when the very gift of intellectualization—a trusted companion that has helped us navigate countless challenges in the past—must now be gently asked to step aside, to take a deep, nurturing breath, and to create a sacred space of quiet where we can truly listen.
There are many levels to listening, each requiring a different quality of attention and stillness. Only when we truly calm our racing thoughts and quiet the constant chatter of our analytical minds can we begin to perceive those subtle, invisible forces that flow through our body, mind, and surroundings. Deep within us lie innate tools, gifts we've carried since birth, waiting to be activated—tools that allow us to tap into vibrations and signals that initially seem imperceptible to our ordinary senses. Like a dormant windmill suddenly catching a gust of wind, this awareness can unfold dramatically, revealing an overwhelming wealth of information and subtle cues that were always present but previously unnoticed. The truest, most profound form of healing emerges when we dare to connect authentically with our raw emotions—our deep-seated pain, our burning anger, our gnawing frustration, and our hidden shame. This healing journey demands we develop special listening skills, ones that enable us to sit patiently and courageously with these intense feelings, creating a safe space where we can process them fully and completely, truly hearing and honoring the important stories they have to tell.
As we develop and strengthen these deep listening tools, we begin to see the forces around us and realize we aren't alone. Saying goodbye isn't really goodbye, because these forces live within us. The ones we've lost have shown us how to love, how to play, and how to experience life every day. We just have to learn to listen.
The Power of a conversation is connection
This past year has been one of the most difficult moments in my life. My brother was diagnosed with Grade 4 glioblastoma and had four surgeries to remove the tumor, stop the bleeding, and put an implant to prevent pressure from building in his brain. My family and I had to set up his care, manage the logistics of care, and cover the costs. I spent six hours a day waiting to answer a generic phone number from the hospital. I wouldn’t want to miss the critical dense medical information that I had to distill for my family to decide on my brother’s care. Once missed, then who knows when I will get the callback or know who to call.
During those 6 months, I was speechless. I didn’t know how to convey the confusion, anger, and frustration I had with dealing with inconsistent information and such an inefficient medical system. I didn’t know how to ask for help because I was in the thick of figuring out the problem, collecting data, and sorting the critical tasks at-hand. I was at a loss for words. After those 6 months, my brother was stable and all the care logistics could be done without new information. I started to sit back and processed the “what just happened” moments. I reflected on the times I had to leave my kids when I flew down to see my brother or the moments I lashed out because I felt overwhelmed with the screaming. But in fact, my emotional bucket was empty and I didn’t have enough to tolerate even loud noises. I felt nonfunctional because in my mind I was still unfairly comparing myself to my 20-year-old self and wondered “how come I can’t think as fast or still retain the same memory like before”.
My deepest healing started from a conversation with a friend. Even though I didn’t necessarily have the words to describe the mountain of feelings, she just sat and started drawing with me. We didn’t do anything specific except a marker on thick paper. Slowly our parallel play opened us up to talk without eye contact. Something about making eye contact when you’re vulnerable cuts so much deeper and the avoidance of the eyes helped me open myself up to listen. I heard her story of losing someone dear to cancer as well and that opened my heart to listen deeper; deeper to the loss and grief and deeper to the tragedy. Part of coping and healing is processing the tragedy and slowly evolving the feeling of grief as unexpressed love.
For me, the deep sorrow is deeply rooted in the assumption that I had more time with my brother and that we had time to share a rave one day, and now that day will never happen.
After 6 months, I searched for space to delve into my connections with myself, my feelings, my body, and my relationships. I teased apart the important connections I needed to make with myself and understand how my body, mind, and feelings worked as a 40 year old woman. I began to listen to my inner voice and hear them to understand where they were coming from. I dove into my ancestral past and delve deeper into the generational trauma of my parents’ escape from the Vietnam War. After my excavation, I have learned to redefine what it meant to love myself. I envisioned myself as art and admired myself for the first time after believing that self-love is defined by the people who love you. I realized that I love and should love myself more than anyone else hence I should be more patient, more gentle, and more kind to myself. Even the ones that love us the most can never love us the way we love ourselves. That is what I promised to do and honor my brother’s tragedy: I will love myself more and honor my feelings. Slowly but surely, I am building my foundations and principles on how to connect with myself. This connection makes the healing journey more powerful and I hope to teach these skills to my children and folks suffering from the same pain.