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.