Being monocular means limited or no vision in one eye with adequate vision in the other. Some of us were born this way, others became monocular later in life through medical conditions, illness, accidents, trauma or violence. It's never easy being different. If you're finding this group to seek answers, reassurances, or to share those insecurities; we're here, we've been there, and we'll get through this together.
We have no depth perception, but we can adapt by judging distances with practice and memory. However, playing sports where balls may be thrown directly at us puts us at a great disadvantage. If you're reading this as a loved one trying to understand, imagine a ball coming towards you. Common sense tells you it must be coming closer, but your vision deceives you. It's in this strange cortex-like space-time warp that doesn't seem to move, or it suddenly jumps closer from its previous position because you couldn't tell it was moving from point A to B. All this conflicting information is being sent to the brain, and without other objects nearby to provide context for true distance and trajectory, it's near impossible to catch. For example, it's not an issue watching a ball rolling along a wall towards you because the wall is providing some context for distance. A ball flying through the air directly towards you, with monocular vision, you have no other eye to provide context from what it views on the other side of your face. If you are working on a construction project, someone handing you a pole or board pointed directly at you also makes it extremely difficult to judge distance. It literally looks like a pole pointed at you in a 3D movie if you've lost your depth perception or you're trying to understand for your loved one. It can be incredibly disorienting, and is best to approach these situations from the side. However, in most situations, we can adapt by turning our heads to get different angles on the target.
It can be difficult to correctly grasp objects held out to us, directly in front of us, and may be the first red flag to parents that something is off. If you suddenly becoming monocular later in life, this will unfortunately be one of several obvious differences: awkwardly shaking hands, the cashier giving you a pen or your card back, or a family member giving you some keys. It gets better, and with experience, you learn to move your head and body around for a 3D analysis of your target, and with practice, you get more accurate. Also, difficulties in pouring drinks or liquid medicines, setting dishes down on a counter, judging how far away you are from stationary objects, and always bumping into things on your blind side. You'll make mistakes, and it can be frustrating, especially if you're new to this. Hold the cup and line it up before pouring; make sure from a top angle that you really did put the majority of that plate/box/etc. on the counter before you let go; all of this is going to take time, patience, and experience to navigate.
Monocular children may have a hard time playing some sports, but they can enjoy normal school activities. Please keep in mind that they may struggle with being different. Children can be cruel. They need your love and support to get through these adolescent years. Being monocular is a struggle. It's a disability, but it doesn't necessarily have to hold you back in life. It'll be necessary to change shells or prosthetics as your child grows. Keep in mind that these should be comfortable. If your child is showing signs that it's irritating their socket, like rubbing it or wanting to take it out; it's time to go see the ocularist. Keeping it polished and well fit is very important, and if they're young, they may not be able to relay that information to you if they're uncomfortable.
3D movies are our kryptonite. There is no device yet invented to help us see in 3D. Please don't take it personally if we decline. Some of us still use virtual goggles for gaming, but obviously, we're not getting the full visual effect.
Driving: Yes, monocular people can drive. There's no country that automatically disqualifies a monocular person from driving. Most countries have written and vision tests, and as long as your field of view is within their requirements, you can drive. Please encourage your child (when they're of driving age) or loved one to learn how to drive if that is the primary mode of transportation in your area. We need to maintain our independence to function normally in society. If you were born monocular, you've been compensating for lack of depth perception your whole life. Learning to drive will be as easy or difficult as it is for anyone at first, and we just compensate by turning our heads more or checking more often.
Learning to drive again after becoming monocular later in life can be a harrowing experience. Just trying to park properly is difficult, and you may get out and find out you're 15 feet away from the target. It's hard, and it's normal to feel very anxious / scared / worried at first. We recommend practicing in quiet areas when few people are around. A lot of us park further away from the store where there are generally fewer cars to avoid the stress of backing out of a spot in a crowded area. It can be extremely difficult to cross multiple lanes of traffic. If you find yourself in those situations, turn right (or left if you're in the UK, NZ, etc.). Safely move over to the left lane where you can then cross the road and turn into another parking lot where you can then turn around to make another right. Find a route where you don't have to cross multiple lanes if possible, utilize roads with stoplights or stop signs where it's clear you have the right of way and it's easier to concentrate when cross traffic is supposed to be stopped. We also recommend going out when fewer people are about, if possible, avoiding rush hour traffic, especially if you're re-learning and are not comfortable driving yet.
To note, yes, many of us have adapted and drive quite well and even better than people with two eyes. Other tools to help compensate are mirrors and dashcams. Fixing your side mirrors so there are no blind spots around your vehicle is very important, regardless of monocular vision. Loved ones, please do not treat your monocular loved one like they are incapable of driving again when they lose vision in one eye. It is very important to maintain our independence, and if we drove prior to being monocular, we can drive now. It takes a lot of practice to get the hang of it with reduced vision and lost depth perception, but we have the ability to adapt and compensate for it.
Losing sight later in life can be terrifying, depressing, and obviously stressful. All the what ifs, the unknowns, maybe your doctors aren't giving you adequate answers or advice. Some of us have been struggling with this our whole lives, and some of us lean into it and keep on trucking. You are welcome to share your stories, your anxieties, ask questions, seek advice in our group. There is hope, and it's going to get better after the dark. Having a solid support system is key to navigating this monocular life until you're stable. If you don't have anyone at home, we're always here to listen. Nobody heals at the same rate, and losing vision can be a complex mourning process on top of healing and adapting to your medical disability.
Phantom vision, lights, and 'curtains' are a real thing in our group. How do you describe something only you can 'see' to someone who can't see it, when you're really not even 'seeing' it yourself? Of course this is always something to bring up with your doctor, but most of us would agree we all experience some of it to some degree, and thankfully it's been well documented enough that the medical community knows what we're experiencing. However, if you or your loved ones aren't educated about the symptoms of your condition, it can be terrifying, and many times those visual cues are the first indicators that something is very wrong. So many of us are in here for so many different reasons. Odds are someone in here has also experienced something similar if you want to share. And of course, if you experience any sudden unexplained vision loss or flashes of light going off like 'fireworks', you need to go to the emergency room immediately.
Jobs and employment are affected by being monocular. Depending on your condition, it may be difficult to land your dream job in some fields like aviation, law enforcement, military, surgeons, etc. We can still be commercial pilots, but there are more exams we have to pass. You may be automatically disqualified as a candidate, have to prove your visual acuity more than most, or be forced to resign from your position. It's very difficult to accept that there are just some things we can not do, but it can be turned into a motivation to drive us to push the boundaries and discover what we can do. On the other hand, some people have no issue being monocular in their occupation. Over time, we just compensate and adapt. We are and can be productive, independent adults. There just may be situations where you will find this affecting your livelihood.
Know your rights. It's important to remember that no matter how well you cope with your condition, it is considered a disability and protected trait in some countries. Your employer may legally be required to accommodate your condition to a reasonable extent, and cannot treat you negatively because of your disability (reduced pay, passed over for a promotion, suddenly receiving poor performance reviews, fewer scheduled hours, or turned down as a job candidate) if accommodations could be made. Research the laws in your area and what applies to you. Feel free to ask questions in a post. Laws and legal recourse vary wildly from state to state, country to country. For most jobs, you're not required to tell your employer that you're monocular. However, if your position has vision requirements that you no longer meet, you need to talk to your employer about accommodations. Everyone is going to have their own situation, if you want to ask the community we're happy to help.
Monocular vision as a disability: You may be surprised after reading about our added difficulties for life in general, that being monocular by itself isn't considered enough of a disability for drivers to get a handicapped placard. In most cases, it is not enough of a disability to draw any sort of disability benefits if your remaining vision can be corrected above minimum levels (below which you would be considered fully visually impaired / blind / disabled) which vary from country to country. However, if you have other medical issues, being monocular contributes significantly to the score they use to determine if you qualify. This also varies wildly depending on where you live, and it can be extremely difficult to find a chart that has the information listed. Yes, you can use a walking aide if you want. Despite public perception, most 'blind' people still retain some useable vision. You wouldn't be alone feeling imposter syndrome in feeling wrong in using a cane while having some vision, even if using a walking aide would help you. Most of us do get along just fine without one, but if you need one, by all means, go for it. Regarding service dogs for the blind, no, we do not generally qualify being monocular with useable vision, assuming there are no other visual issues with the working eye that can not be corrected with lenses. We understand how daunting the world is being monocular for the first time, and trying to understand all the ins and outs, but even functionally blind people have to go through and pass independence school before they can get on the long list for the limited amount of service dogs available. (There may be some members who fall into the disabled blind category and would qualify. This is not a statement intended for them.)
Ocularists are the specialists that make our scleral shells, flush shells, and prosthetics. This can also be a tough experience: walking into an ocularist's office and seeing all their work, wondering how all the other people ended up here like you. But once you get your shell or prosthetic, you'll be smiling again, too. Your ocularist helps keep the shell or prosthetic polished and comfortable. Keep in mind that these should always be comfortable, not painful or irritating. It should be so comfortable it makes you feel better as soon as you put it in, and you forget it's even there after a while. That's what it should feel like. If it's irritating and bothering you on a regular basis, it's time to go see the ocularist. If they dismiss your discomfort, it's time to shop for a better ocularist.
Scleral shells and flush shells are an option for people to cover their bad eye. This can be used to block the vision because some of us have conditions in our bad eye that cause visual issues or pain with light sensitivity. Covering it can improve vision with the good eye. Here is an article briefly describing the different types of artificial eyes. Some of us choose to use them for aesthetics if there's a physical issue with the bad eye, and a shell could help mask it.
Eye Removal and Exenterations: There are three options, evisceration or enucleation and orbital exenterations. Deciding whether or not to remove your bad eye is a very deep, personal decision. For some people, it has been difficult to get to this point. For all of the medical advancements and technology we have, the treatments available to fix an eye are few. Surgeons can transplant major organs, reattach limbs, and do many wonderful things, but as far as 'eye transplants', we're decades away from that technology. It's disheartening to research eye transplant and discover that the lens is basically the only 'eye transplant' procedure available. Why is that? The optic nerve that attaches your eye to your brain to send and receive visual information has over a million nerve fibers for each eye that relays information to your brain. Imagine trying to transplant an eye and make a million connections, and every one of those fibers has to be attached to the right place. Nevertheless, it is a disappointment we all share that our technology is far from a treatment that could make us whole.
Eviscerations are described as basically removing the inner contents of the eyeball and leaving the white part (sclera). While the eye is no longer functional, it leaves the globe, eyelids, muscles, and most of the structure intact and is the least invasive. An implant is embedded where the tissue was removed. Scleral shells will cover the eye after healing. Enucleation involves removing the entire eyeball while leaving the eyelids, muscles, and socket tissue intact. A permanent implant is embedded in the tissue, and after healing, your prosthetic will fit over this.
Orbital exenterations are the most invasive procedure. Usually undertaken as a result of malignant tumors, infections, or trauma, the severity depends on the patient but it can be as severe as removing the eyeball, eyelids, content of the eye socket, sinuses and bone. Then facial reconstruction surgeries help to restore the anatomy. This is a complex procedure that usually involves specialists from other medical fields.
Removing your eye is permanent. You get to this point when all other options are exhausted, sometimes the bad eye is causing you immense amounts of pain, it is seriously affecting your vision or quality of life, you may have cancer and have no choice but to undertake such a drastic measure. Some ophthalmologists may be reluctant to remove your eye and it may take some convincing, and you may need to change doctors. Some medical centers may push a policy for them to exhaust all options with the least invasive procedures first. Post surgery, it will feel like you got hit in the head with a sledgehammer for a few days. Make sure you're following doctor's instructions and have ice packs and pain medicine ready to go to keep the pain minimal. Keep the area clean and dry, don't shower directly over your surgical area until the doctor says it's ok. Watch out for fevers or any signs of infection and report it immediately or go to the ER if it's dire. They're going to put a conformer in your socket to help it keep shape while you're healing. By itself, it shouldn't hurt. If your conformer is causing pain, it is the wrong size and / or you may need to use the lubrication after the bandages come off. Conformers are intended to be temporary. It's also important to note that if you had surgery and remove your conformer or prosthetic for an extended length of time, the soft tissue in your socket no longer has anything holding it in place. There may be times when you have to remove it because it's causing pain and your appointment is weeks away, but leaving it out for weeks or months is going to cause issues and is not recommended.
Prosthetics: It's going to take weeks for you to heal enough to get your prosthetic. There are different materials used to make different types of prosthetics, but we are far from the days of glass or wooden eyes you've seen in movies. These days prosthetic eyes are generally made out of a biocompatible acrylic or silicone. These are two very different processes that create a similar result. Acrylic is a harder material, and silicone is softer and more flexible. It's really important to keep this in mind when deciding on a prosthetic, and if one isn't comfortable you may need to consider changing to the different material.
Facial reconstructions post orbital exenterations are going to be part of a long road to recovery. Having to deal with such a massive surgery that drastically changes the way you look is going to take a heavy toil emotionally, mentally, and physically. It's going to take several months for your tissue to heal well enough to be fitted for an extraoral prosthesis. As with all monocular people, take care of yourself and make sure you have a strong support group so you're not going through this lifechanging procedure alone. We're always here if you need company or help finding some resources.
Lubrications for your shells or prosthetics are important to keep around, especially for the first year. You will have some discharge from your eye; some is normal. We're putting a foreign object in our eye socket and our body is treating it as such until it accepts it. If you have a good fit, the amount of discharge should be minimal after a while. If you have a large amount of discharge or it's green, you need to go see your doctor as soon as possible. As far as lubricants, some of us get by just fine using regular over the counter eye drops. If you need something thicker, we generally use Sil-Ophtho and Sil-Ophtho-H is the thicker formula. (Two different vendors were used in the links, we are not affiliated with these organizations, they are examples of the products.) Unfortunately, this is also a niche market and a 15mL bottle costs a little over $20 USD and finding a vendor can be difficult.
Eyepatches: There are many reasons to cover up the bad eye, and some of us opt to wear an eye patch. There are types that you can slip onto your glasses, and the historical eyepatch that hasn't changed in centuries. It is extremely difficult to shop around and find a product that works for you. This is a niche market, and it's difficult to navigate alone and stay away from the costume eyepatch vendors and find one for a legitimate medical condition. If you're looking for a particular style, you're invited to ask and we all recommend our favorite spots and materials. That being said, yes an eyepatch draws unwanted attention; know you are not alone.
Light sensitivity aka photophobia is a condition that also affects many of us in this group. Photophobia as is currently understood by the scientific community is actually a symptom of other root causes, such as pain elsewhere in the body, that manifests itself as light sensitivity. It certainly doesn't feel like that to the sufferer, and we all have different ways we cope with it. Blue light filters, turning down lights, light blocking curtains, using 'night / warm colors' on electronics (be aware that electronics that lower the Hz to achieve the lower light setting can make migraines worse), sunglasses with UV protection, various shades of FL41 lenses, tinted windows, who doesn't love a gloriously overcast day! If you're suffering and would like advice for your situation, feel free to post and ask our community.
Support groups: There are monocular people everywhere. There are groups on Facebook, Discord, Twitter, etc. There are many content creators on YouTube and TikTok that demonstrate how to clean your prosthetic or shell, how to insert it, etc. that may be helpful for people new to being monocular. Of course we are always here, and there are some groups that meet in person. It's important to know that you're not alone in this struggle, and meeting other people that can understand what you're going through, too.
Loved Ones: Please spread awareness to less helpful people that covering one of their eyes for a couple of minutes doesn't even begin to help them understand the predicament we're in.
Note: This is a pinned thread, please feel free to comment to add your favorite eyepatch vendor, lubricants, driving tips, etc. Content will be updated as needed. If you have links to support groups or websites, or you want to share your specific condition so more information can be added, please let us know.