Something Is VERY Wrong With My Eye

追加: 2026-05-19

[00:00:00]Just a few weeks ago, I had surgery for an eye that went from healthy to nearly entirely blind in about five months.

[00:00:07]Tell me that you'll tell me that you'll throughout this time I bounced between different doctors, hopping between hospitals, clinics, ferry trips, taxis, and flights. I went through several misdiagnoses, including being admitted to hospital twice. once for a suspected stroke.

[00:00:42]Made it. Meanwhile, every week my vision became progressively worse. What started as a distracting blur was developing into visual disturbances frighteningly fast. If I didn't get treatment quickly, I'd not be able to drive or to travel or to earn a living, yet alone caring for a [ __ ] ton of cats or even myself. My vision is so important to me because if I can't see, I really can't do much.

[00:01:12]Now, disclaimer, this video is not medical advice except for making that healthcare passport that I keep bringing up because guess what? You just don't know when life is going to hit you from the side on some random Thursday afternoon. There'll be clinical imagery and discussion of surgery in this film which might be upsetting for some particularly squeamish viewers. However, I would like you to persevere and I'd encourage you to watch the video. My story is a very rare example of a very common condition and the more that you know, the better prepared you will be if this happens to you or a loved one. If you've only got five minutes to spare, you busy busy people. I I see you there.

[00:01:53]Well, click this link for the healthcare passport video. If you don't have one, you need one. It might even save your life someday. This is the first episode in the story of how my left eye went from fine to nearly useless in about 5 months and the chaotic, sometimes absurd, genuinely scary path that got me to the operating table and beyond. That random Thursday, a late autumn morning, I woke up and popped in my contact lens as I usually do. Except this time, one of the contact lenses just didn't work.

[00:02:26]No matter how many times I tried taking them out, putting it in, taking it out, putting it in, it didn't make any difference to my vision. I thought they must have been a bad batch or something, like I needed a refund. So, I went to the optician and when I was there, they told me that they saw something on my retina and told me I had to go to the emergency department that same day saying it was likely a retinal detachment. So, they gave me a letter and a print out of my retina with the the scary suspicious bit they circled and they sent me off to the hospital.

[00:02:59]The hospital was quick to admit me and I had my first scans and blood tests and an appointment with the opthalmologist which is an eye doctor who to cut a long story short diagnosed me with probable CSR. But the OCT scanner which is a special type of scanner for taking images of the back of your eyeh wasn't working that day as the hospital hadn't paid their license fee like literally for their software. So it it expired and they just couldn't look at my eye. Now CSR stands for central cirrus retinopathy and it's caused by a fluid buildup behind the retina of the eye. It causes vision to become blurry and distorted and it usually goes away by itself. So without the uh the full diagnosis being confirmed, they sent me home and told me to come back in a couple of days which I did. The hospital had paid their software license. I had the OCT scan and they found no CSR. The hospital rediagnosed me with macular pala and a possible baro or branch retinal artery occlusion which can be caused by a type of TIA or stroke. This meant that I was straight out of the clinic and back to A&E where they wristbanded me and admitted me back into hospital for a day to conduct all of the heart and blood tests. Being told that I'd likely had a stroke was absolutely horrifying. Not horrifying in the way that I was informed like you can't drive anymore.

[00:04:28]Like I was no longer permitted to drive and my car was in the hospital car park.

[00:04:32]Um and it's not scary in the uh you know oh I'm being seen by a geriatric specialist now. But in the oh [ __ ] kind of way. There's something about feeling absolutely nothing. just completely numb with, you know, a plastic hospital name tag on your wrist and you're sitting waiting for your name to be called out and you know when you emerge from behind those doctor's doors that your life will somehow be changed forever.

[00:05:00]I live on an island with a tiny struggling hospital. As I make this video, it's currently at what's called Opal stage 4, which means that they're seriously struggling and have canled all elective procedures. It's a bit like how bigger hospitals were struggling during the peak COVID months. So, they couldn't deal with me and they flew me across to an eye specialist hospital in Liverpool for an MRI and a die test. I got to Liverpool and spent 30 minutes trying to figure out where I should be. I am lost in this hospital. I am so lost. I am so so lost.

[00:05:38]>> I just have to do the thing. It's very difficult for two things. Jesus. Number one, autism. Number two, being a man.

[00:05:44]And that's what directions.

[00:05:46]>> I also checked in on the display screens in the the waiting room here.

[00:05:50]>> Dated my telephone number, which was like a 10year-old one. And I changed my ethnicity.

[00:05:57]Um cuz it's like my ethnicity was not entered. So I thought, oh, I put it in there as like white mixed Asian. I pressed black AfroCaribbean and I can't seem to go back and fix it.

[00:06:10]So a reception was expecting a black dude rather than a mixed race Malaysian guy. So great hospital stuff happened in Liverpool and the outcome was that I had a cataract which was a relief but it also raised a few questions. Why just one? Don't people get cataracts in both eyes at the same time when they're really old? And aren't they really slow to develop over months or years?

[00:06:39]As it happens, I pulled the short straw on this with a super rapid cataract. And of the three possible subtypes that it could be, I had all of them. It was super rare to get one at my age, rapidly developing, but according to the lead consultant, it isn't unheard of. Now, the visit was back in February, and at the time, she graded it as a grade 1 plus cortical, grade 1 plus PSC, and a grade 2 plus nuclear sclerotic. Now these are grading scales from one to four. And just a few weeks later, the cataract in my eye had advanced to a grade three to four. As the lens was changing so fast, it was also becoming more dense and my eye pressure was rising. The clock is ticking. I I don't have years. I don't have months to wait.

[00:07:23]More like weeks before my remaining functional vision disappears. If you don't know me, I'm Quinn from Autistmatic and a good friend of Mike's.

[00:07:33]Before Mike and I knew each other, I spent 30 years of my life in optics making and dispensing people's glasses.

[00:07:40]So, he asked me to do this bit.

[00:07:43]A cataract is not something on your eye.

[00:07:47]It's your natural lens going cloudy.

[00:07:51]Your eye has two main focusing bits. The corner at the front, which does most of the bending of light. That's the lumpy bit you can feel under your eyelid that contact lenses sit on. And behind that is the iris. And just inside the eye is the crystalline lens which does the fine tuning of our focusing especially for near objects and reading. When you get to my age, I'm in my mid-50s. It doesn't stretch as well as it did when I was younger, which is why I need different glasses to read with or multif focals like the ones I'm wearing.

[00:08:26]The cataracts that Mike had to have removed were defects that appeared inside one of those crystalline lenses.

[00:08:35]From Mike's point of view, when his cataracts formed, that lens stopped being a translucent marvel of refractive biology that literally bent light to his will to something more like a dirty cellar window or a cracked shower screen.

[00:08:50]Everything lost distinction until it felt like looking through the battered age yellow plastic of an old car headlight cover.

[00:08:58]Which is why even though Mike's glasses prescription was correct, the light getting into his eye was being distorted and scattered before it reached the retina at the back of the eye where vision actually happens, making it impossible for him to see clearly.

[00:09:14]Thank you very much, Quinn. Much appreciated. Catacts are often described by whereabouts in that lens the clouding is happening. My left eye was basically doing the full Pokemon evolution and collecting all three subtypes all three evolutions at the same time. So first the cortical cataract. This sits on the outer layer of the lens like spokes around the edge and it scatters light rather than allowing it to be cleanly focused. Visually, it means that glare ramps up, especially from things like bright sunlight or artificial lights or headlights. You get streaks and starbursts and that that feeling of why is every light trying to murder me more than usual. The weird thing about this type of cataract is that your vision can feel sort of okay when the lighting is calm or you're indoors at home, but then it just falls apart the moment that there is any contrast or a bright point of light. The second type of cataract is posterior subcapsular cataract or PSC.

[00:10:13]Now this sits on the back surface of the lens near the optical hot spot that light has to pass through. Now this type of cataract disproportionately wrecks any near vision and reading. It also creates halos and glare and bright conditions and often it's reported as feeling worse than it actually looks to a clinician on paper because it's actually in right in the middle of the optical path. This type of cataract makes the world look like it has a a thin kind of greasy smear over it and no amount of squinting or blinking or refraction gets gets you back to a crisp crisp vision. The third type of cataract is the one most people understand as cataract. It's the nuclear sclerotic cataract. It's the main part of the lens and that's where the lens gradually hardens. It becomes denser and it changes color. It moves towards a yellow kind of brown color. It makes colors look kind of warmer. It puts that kind of like Mexican summer filter onto your vision. And it also changes the focus point of your lens because as the lens becomes more dense, your prescription changes. So, this one can feel like a steady loss of crisp detail and contrast, like someone's turning down the resolution. It kind of feels like you've got this kind of coloration. That was easy for me to understand. It was easy for me to pick up on the color differences because my other eye was fine. So, I could kind of like go, why is one eye like really white and blue and the other one's kind of like yellowy hazy. Any one of these cataract subtypes can be a bit annoying. One component gives you glare, another one just trashes your close-up clarity, and another one just eats away all of your contrast and general sharpness. So, you end up with vision that's not reliably correctable with glasses because the issue is not just focus, it's the quality of the light. It's the quality of your vision. Usually, when something goes wrong with your body and you go to the doctor, you get a medical diagnosis and that means it comes with a set clinical pathway, right? So you have symptoms, you go get them checked out and you get a diagnosis and then instantly there's your treatment plan.

[00:12:13]Here's the pathway. That's how the medical model of disease and medicine works. But as an aside, it's also why the medical model of disease is a terrible lens for which to manage autism. But that's a story for another day. Receiving a diagnosis of cataracts on the NHS means that yes, the health care is free, but the weight lists are and in the aisle of man over two years long. And that's despite them putting me on the urgent case list, which at the current time is about six months away.

[00:12:40]So it would have been Christmas before I could have had any surgery at all. At the speed I was degrading, it's risked permanent vision loss. It's amazing and I'm super grateful that we have a free healthcare model at all. Like every country should have that. It's a social safety net, but it does have additional limitations. It's not perfect. First part is removing that cataract. And when that cataract or cloudy lens is removed from my eye, well then your eyes unable to focus on anything. It's the lens that's gone. So an artificial lens has to be implanted in its place. There are tiers for artificial lenses. Yes, we could tear chart them. The NHS funds only the most basic tier, which would give me distance vision, but it would have meant no aigmatism correction and about 13 diopters, which is so much of difference between my operated eye and my other eye. My vision would be really messy. I'd have to use a monle or an eye patch or constantly use a contact lens, but I wouldn't be blind.

[00:13:46]The next tier of lenses, and yes, you do have to pay extra for this one, are what's called toric lenses, just like the monopocals. They give you a stigmatism correction, but otherwise are just focused for one particular distance, usually far. Now, they're only focused for one particular distance because they're basically plastic. They are set in the factory. They don't accommodate or allow your eyes natural muscles to focus the lens and refocus it for reading. Say the next tier of lenses gets a little bit more tricky and it's a complex minefield. The multif focal or triocals or EDF or extended depth of field lenses. Now this whole family of lenses split the incoming light into more than one focus point and then it's up to your brain to adapt to figure out what to do with the resulting image. The advantage to these lens types is that they can give you more focus depth. So distance in far and intermediate, so your computer use, and a bit of near or reading vision without needing reading glasses necessarily. The downsides that they often too often cause glare, halos, streaks, or other visual disturbances.

[00:14:55]And as they're splitting the incoming light into little bits, there's some loss of contrast, too. Now, that's unfortunately where the current state of technology is for eyes right now. For the most part, medical technology will eventually get to the point of replacing the natural lens with a proper one for one kind of fully synthetic accommodating lens, but we're not there yet. So, I made the decision to go with the current state-of-the-art lens, an AI designed spiral non-defractive. So, it's a refractive lens manufactured by a British company called Raina. Now, they're not the largest company in the world in this area, and this lens is very much in the early adopter stage, but this company was the first to ever make a lens. And this lens promises on paper some exceptional characteristics from near through intermediate and distance, all without any light loss because it's refractive, not defractive, and minimal glare. Again, because it's refractive, not defractive. So reading the research, it only has one peer-reviewed study so far and it's a manufacturer sponsored study using data from around a dozen surgeons and all of the patients. Well, let's just say I don't fit into that cohort because I'm a couple of decades too young.

[00:16:08]So it's early early and it's not yet approved in the US yet. I'd also looked at a lens called the Bosch and Lom and Vista Envy which is a multif focal design which could have given me slightly better reading but was more likely to cause a drop in contrast.

[00:16:24]There was a recall for something called TAS last year which I have to say put me off the model this particular model a little bit. I won't bore you with all the details of my research. It was hard enough doing most of it with just one working eye and it took longer to study than my ABA documentary did. that's linked here if you want to watch that one. Then it was time to pick a surgeon.

[00:16:44]I wanted to go back to the eye specialist hospital that I was diagnosed at because they have amazing quality surgeons, the some of the best surgeons in the UK and it's a proper hospital doing all hospital things. So there's backup if something went wrong. Um I had an email from the surgeons PA and noticed that when I went to do some due diligence on that person that they only operated on around 120 eyes last year.

[00:17:07]And that's not an encouraging number. I wanted to see a surgeon who does at least 600 surgeries a year. So I did what any former Microsoft, former defense, former NHS autistic software engineer would do and I scraped the UK's national opthalmology audit data for surgeons in my area using the lenses from my short list and I ranked them by surgical volume and postoperative complication rates. Just going through some of these some of these surgeons. So this is Liverpool which is close enough.

[00:17:39]Uh I can go here and I can search for records and there is not enough data.

[00:17:51]Okay, that's not a good sign. Okay, this guy now I've seen him on YouTube. I'm sure I have recognize his face. So let's have another little look.

[00:18:01]Okay, cool. He's been found and show percentage data 63 operations in a year.

[00:18:11]The complication rate is a bit lower than benchmark but just 63 operations like okay. How about this one?

[00:18:28]Open your eyes.

[00:18:32]Tell me that you >> I'm not saying that's what every autistic person would do, but um you got my ven diagram earlier there. Anyway, I picked a few and I contacted them by email, obviously. So, some of the better surgeons offered me a video call, which was the most video call. These are some of the most nervous video calls I've ever had in my life.

[00:19:13]>> One thing um we sort of fear in myopic or short-sighted patients and young patients like yourself is obviously retinal detachment. I know Indu must have examined your retina and I will do another thorough examination as well but um this is one thing to bear in mind if you have a cat we dilate your pupils we put some drops in your eyes which may make your vision closer a little bit blurry >> and then that way we can have a look back the health of the eye check the cataracts as well.

[00:19:44]>> Thank you.

[00:19:44]>> All right. Bye.

[00:19:45]>> Take care.

[00:19:46]>> Thank you. You too. All the best. Have a good day. Byebye.

[00:19:48]>> Bye for now. It's like an inverted job interview where the candidate that you choose is the one who wields the scalpel near you in your eye while you're still awake. So, so, so to say that I was stressing and ruminating on this choice over and over and over again all day and all night and even when I'm dreaming is an absolute understatement. One of the good things about the way that my particularly monotropic brain works and focuses attention is that I can lock onto a problem and build a genuinely useful mental model of it fast. When the NHS kept throwing different labels at my eye, retinal detachment, baro, CSR, stroke, TAS, macular pala, all this stuff. I did what I always do. I took copious notes and I researched hard. I then used them to ask some better questions and I kept my notes like my life depended on it because honestly it kind of did. The same wiring has a horrible downside. When I'm focused I can miss other input that should be really obvious. Case in point, my first hospital appointment. Okay, so uh I've just spent a night premier in visit the first clinic, possibly the clinic. I guess I won't know until until I know. But today I get some imperson answers and so it's so stressful and I'm really really tired. All right, I'm here. Nervous. I traveled from the aisle of man over 100 miles to the hospital I was certain I was meant to be at. I was on time. I was ready. I was prepared. I had my drink, my tea, and my safe snacks. I was ready.

[00:21:30]All my notes. I was good. I walked in and I marched up to the reception and tried to check in. Uh, tap tap tap tap tap. Silence. They told me I wasn't on the list. Lost my name again and again and the spelling of my name. This can't be right. I I checked and I had double checked. This whole healthcare nightmare was my life for the last few months to the point where I obsessed with ensuring I got it right and planned every last detail. I was where I was supposed to be at the exact time that I planned. So, I did the most autistic thing imaginable.

[00:22:05]I I doubled down. I insisted politely but firmly that yes, I was on the list and yes, I had traveled a long way.

[00:22:12]Therefore, the system must be wrong.

[00:22:15]The system wasn't wrong. I was wrong. I was at the wrong hospital.

[00:22:20]>> Made it to the right place in the end. I went to the wrong one. It it took an embarrassingly long moment for my brain to let go of I have an appointment long enough to process at a completely different building in a different town which is funny in hindsight but it also matters.

[00:22:37]This is what this intense focus looks like in real life. This is pretty common for me if I'm honest with you. This is how every day is. This is how my this is how I am. This is how my life is. It it can make me brilliant at troubleshooting, but it can also make me confidently argue with a receptionist while I'm standing in the wrong postcode. I had the appointment um uh eventually at the right hospital and I recorded a short message from my Patreon supporters. Thank you so much all of you. Some of you have been worried and I do appreciate that. So, let me tell you what's been going on. Oh, if you're new here, it's not normally like this and that's the truth. See you. Bye for now.

[00:23:18]It was only a few weeks after my NHS appointment that I returned to my local doctor who said, and I quote, "It's really weird because to have a cataract developing within a few weeks is not common. I've never seen it progress that quickly." And after a slit lamp investigation, they said, "Oh, yeah, it's much worse than that." Well, well, that's good. By this time, night driving was getting rather exciting. My right eye was healthy and 2020 with a contact lens, but my left eye open. I could see a lot of glare, like streaks across my vision. It looked weird. I was already light sensitive, but this was just dafted. If you've seen my video, the one where my head got glued back together and I lost some dive kit to the sea.

[00:24:01]Poseid must have really wanted my mask, snorkel, and dive weight belt that day.

[00:24:04]Anyway, if you've seen that video, you know what I'm talking about. It's a filming gig where I sustained blunt force trauma to my head and that's most likely the cause of the sudden vision loss down the road. Up to 65% of direct ocular traumas can lead to cataract formation. And although this wasn't a direct impact to the eye itself, it's most likely what caused the cataract in the first place. This is just a mess.

[00:24:28]Thank you to Fran, the lovely autistic cat who sent me a load of pretty stickers during this time. You didn't know, but they arrived at a time and really chewed me up. And as you can see, I went to town on my suitcase, just so that you know it's mine. It's covered now in a in a shitload of shiny cats.

[00:24:43]So, thank you so much. It was Tuesday night, the night before my surgery.

[00:24:49]Suffice to say, there was no live stream that day.

[00:24:52]It's the 21st of April. It's about half 11 at night and I am in an apartment 12 hours out from eye surgery and I am scared. I am pretty I am pretty anxious about it. The most startling thing if you switch, you know, if I switch eyes is that my left eye is so intensely blurry.

[00:25:23]And not only that, but there's a color cast as well. Like the colors are different. I can barely make out the camera. And all of the lights have got these rainbowshaped halos around them. I can see the kitchen down lights behind me. They are quite small lights, but apparently the there is a wide sort of halo around them. There's also lines emanating out from the halo quite large. There's also kind of obviously a big mist as well. It's It's not a great look. There are no specialist eye surgeons on the island where I'm from. So, I've had to catch a flight to come to the mainland in order to uh to get the surgery. I'm going to be back here quite a few times over the next few weeks. And that's partly why there's so much disruption, I think, on my YouTube channel. I'm really sorry about that. It's why my backdrop's different. I spend a lot of time reading, and that's been really difficult lately. It's been really difficult. I mean, I can make things I can adjust my screen settings on my phone and my tablet and my my laptop to to make it easier to read, but I read fast and I just haven't been able to keep up with what my brain is able to take in. And and it's incredibly frustrating. Um, so as you've noticed on my YouTube channel, the usual detailed heavy science communication content that I usually make, I just haven't been able to do because I can't read papers. I can't read stuff. I can't skim. I can't there's things I want to be able to do that I was able to do even weeks ago that I can no longer do. The first thing once this is done and I've waited a few weeks for my eyes to properly heal, I'm going straight into the sea. Nothing's going to stop me. I'm going to be straight in the ocean. I'm going to I'm going to walk. I'm going to enjoy nature. I'm going to go out into the ocean. I'm going to go and and swim in a river. I'm just I'm I'm out of here.

[00:27:42]Amazingly, my new interro lens is being delivered to the theater by UPS. Yeah, that UPS. I know it's kind of funny when you think about a Cora's route just delivering everything from plant pots to new eyes.

[00:28:01]But my implant hadn't arrived, so I had a bit of bonus rest time while they rushed one to me. The hospital did let me know um before I left. So, I just went back to bed for a couple of hours and I needed it because I slept terribly. The team who did my surgery and care were flawless. I mean, amazingly flawless. Like, they were absolutely lovely and tolerated all of my questions and and never rushed me once, at least that I'm aware of. I was booked in on a quiet surgical list day that's usually reserved for the most complex cases. So, the hospital was quiet and there were less people around.

[00:28:36]So, I made it.

[00:28:39]You can see the state of my eye right here. The this white circle, it looks like a white marble. It's opaque and it is my natural lens. It should be crystal clear, not opaque like this. My iris had to be held back with these wires and the cloudy lens was removed via a process called fico emulsification. And that's essentially ultrasound to break apart the cloudy lens which then gets sucked away under vacuum. The surgeon was absolutely S tier, by the way. I was I was feeling completely confident, 100% confident in my surgeon. I did warn you at the start of the video, but if you missed it and you're particularly squeamish, you might want to skip forward 10 seconds ago. At the start of the surgery, I could see three bright lights in the surgical microscope. And once my lens was being cut away and removed, this whole visual field just opened up into a giant circle of patterns and colors. It felt like an alien abduction, if I'm honest with you.

[00:29:35]except they were working at the other end. Anyway, because of my head trauma, this wire was placed into my eye as a sort of scaffolding support before the new lens was inserted and rotated into position. The wire will outlive me almost certainly. I knew they were inserting a capsular tension ring before they even told me because I saw it coming and spitting around and then sort of like fitting into my eye. Was it kind of weird? It was really, really weird.

[00:30:01]Probably the only experience. It feels very cyborgish. It's very very cyber punk. Eventually the new lens goes in and follows it in and that gets inserted and rotated in position two. Whilst the lens is only a tiny little lens and it goes into your eye all folded up and then it opens out which is kind of magical to see from the other side as well. I could see the unique spiral pattern of the refractive circles which are encoded into the lens itself. It's like looking up at the bottom of a wine glass almost. I almost wanted them to pause the surgery for a bit just so that I could like count the rings and study them a bit before eventually I wouldn't see them anymore. Before I knew it, I was sitting quietly recovering with a cup of Yorkshire tea and oat milk and feeling my adrenaline slowly dropping.

[00:30:49]I have some pineapple.

[00:30:54]I have pineapple.

[00:30:56]I need tea. Okay. Uh, I'm not sure what to say except um, eye surgery is done.

[00:31:05]In the morning, I take this off um, and see what I can see. See what it looks like under there. Clean it up and so on.

[00:31:13]This is my pot of Yorkshire tea. This is my second pot of Yorkshire tea. Do not travel for surgery without this. This is what makes it all better. But also stepping out outside the building, the lights were incredibly bright. I practically had to walk just squinting squinting along. It's a it's a very spiraly lens. And you could I I could see these spiral lines.

[00:31:37]Even during the the procedure, I could see them when that was inserted. I could see the the spirals. Got eye drops. Let me just make sure. And uh interestingly I I'm not allowed to exercise now for a couple of weeks. Then I have surgery again and again it's another couple of weeks of low activity. I had to hang around in the hospital for half an hour as well.

[00:32:02]So the doctor could check that the that the lens was centered correctly. As long as the lens is within plus or minus 5° it's still going to be accurate.

[00:32:11]>> Anesthetic is wearing off now.

[00:32:14]My eye is it's itchy. It's watery. Um and I'm being a wuss, but like it's like I want to scratch it so much so much.

[00:32:41]Part two will be out in a few days. See you then. Bye for now.