It has been close to four years since I lost my vision, but I keep telling myself that one day I will have robot eyes and it will be fucking awesome and well worth it. All of those sided Normie‘s with their regular eyeballs won’t be able to enhance and zoom 20 X like I will and the distant future. Maybe not tomorrow, maybe not next year, Hell, maybe not even in my lifetime but that’s what keeps me moving forward. It’s going to be freaking awesome.

I don’t know what to say as to emotions and “dealing” with them as I don’t know you personally, just know you are not alone. I’ve lived with RP for 30 years now, most days are good, some are bad.

So, I’ll just address the macpucker. A pucker is a layer of scar tissue that forms on the retina, the light-sensitive cells at the back of the eye.
The scarring is also called an epiretinal membrane and is typically concentrated on the macula. It sits in the middle of the retina and is responsible for the center of your field of vision. ‘They are telling you, they see scar tissue in your eye. This is common in RP, we all get it due to the deterioration of the rods and cones. Your doc just used a different term.

Whenever I get into moods like this, I always remind myself it could always be worse. Sure, I went suddenly and totally blind 4.5 years ago, but it could always be worse.

For example, I could currently be a 14yo girl in Kabul too terrified to even leave the house anymore because the Taliban are now in control, and terrified about what my future prospects in life are aside from becoming a sex slave to a Taliban soldier.

I could be a little boy in Madagascar right now who's main possession is an empty rice bag which doubles as both, a shirt and a bed. Due to the long standing droughts there's no food, and I'm stuck eating roots everyday. Since there's no electricity or gas either, we can't cook the roots and instead only let them soak in water before we eat them raw.

I could very easily be laying in an ICU bed right now struggling to breath with Covid causing multiple organ failure, while I make my peace with the world during my last moments.

See, it could always be worse...

Yeah, you’ll be just fine.

Being totally blind is not the end of the world so don’t count on it too much, and don’t hold your breath.

I am in my late 20s have been blind since I was 8 years old totally. I have been everywhere, done everything. Have a pretty fulfilled life, besides my family, but that’s another story for another day. I live a normal life just like you, I tell people I am just a normal person but can’t see, that’s all.

I travel, go to school/work. Can do art but not visually. Can do almost anything you can and technology may in the future enhance that. I have learnt my skills well so have a great digital literacy,and use computers extraordinarily well. Even if a website is hard to use I can use it.

I’ve traveled to 8 different states in the Us. 5 states and a property or six states whatever you count it as I did on my own. I had little trouble and just accessed it. I currently go to school and study computer technology. Most students are required to turn in the first chapter by tomorrow I am half way done reading the 3rd and will be turning that in probably today way ahead of the class. And getting As. This is a blind person, yes. All using adaptive technology. Plus I am posting on here. Still need to do my geometry homework. And will be done with at least chapter 1 by tuesday morning.

I have worked in a lab and have guided sighted students to use the website and register for classes helped in registration support in essence. I have helped out and volunteered around tech throughout most of my 20s. Have been one of the most robust and loudest advocates in disability offices. Represented the blind community several if not a handful times in my life. When I was on the accessibility board two years ago up to when the pandemic started, a student asked me if I was a graduate student studying this stuff. I said no. Basically saying I was really good at it.

I have traveled well and explored much of Southern California where I live and had the chance to set out and explore much of Frisco when I lived up there.

I can and do cook and clean like everyone else.

I say this not to brag but. To say whatever. If you go blind you will be fine, not the end of the world, you can adapt.

Hopefully you don’t but there’s no reason to be so scared of it. Relax. If you become totally blind life isn’t ending.

Maybe I can offer some reassurance about the retinal puckering part (just to note, I'm not a doctor or a retinal specialist). It's also called macular pucker or epiretinal membrane (ERM). It is a membrane that grows over the surface of the retina. It grows to a point and then remains stable most likely for the rest of your life. For many people who have it, it doesn't affect their vision. For those that do notice it, it can cause distortions (e.g. straight lines seem wavy) and decreased acuity. If it gets bad enough there is a surgery that can be performed called a vitrectomy and membranectomy.

If they said that yours is stable it's probably not going to grow anymore. If your central visual acuity is more or less the same as your last visit and you're not noticing distortions then I wouldn't worry about that part. Sounds like you've got much more on your plate. I hope that can at least reassure you about that part. Of course your retina specialist can provide you with more information about your macular puckers and how they may be affecting your vision. ❤️❤️❤️❤️❤️

Source: am a scribe at a retinal clinic

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I'm sorry. It's rough. I'm not in the same situation as you, however...

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I lost my sight in the space of a week when I was a teen. I had eye surgeries that were supposed to fix it. They didn't end up working and they just gave up. So I had to start over with learning pretty much everything while also trying to get through the eighth grade. It mentally destroyed me and even though I got back on track and ended up going to college and doing a bunch of different stuff, mentally I was so depressed and just wanted to end it all for good. While the technology and software for the blind and visually impaired is far more advanced and awesome than anything I had during middle school, high school, or during and after college, it's not like it gives you anything remotely close to true equal access when compared to a sighted user.

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I have had no sight now for 26 years. While I have some work, hobbies, two kids, and finally moved to a decent area, I still have bad days. Not being able to drive, read print, being very limited job wise, and the fact that I am forgetting what things looked like etc. That last thing probably upsets me the most because it's all I had left. When I try to think of specific images a lot of the time these days, my brain just comes up with nothing. It's really upsetting and nobody gets it.

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Throughout this whole experience, when it comes to doctors, state agency people, TVIs, mobility instructors, and even friends and family, I am rarely asked how I am doing. that is a huge issue and nobody seems like they want to go there.

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I wish that people who are involved with a person who has gone through sight loss, or is currently going through sight loss, would talk to them about this. The mental part of this and the frustration and damage it can cause should be openly discussed and not brushed under the rug.

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Just my two cents!

I'm so sorry. Have you tried joining group tele-support groups? Lighthouse Guild sponsors some, but there may be others.

https://lighthouseguild.org/support-services/telesupport-groups/

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How do I deal? I take life with a healthy dose of cynicism. My life motto is prepare for the worst and hope for something mediocre to happen. I’m basically never disappointed because I’m always able to handle whatever comes my way since I prepared for it and sometimes I get pleasantly surprised by outcomes. I have glaucoma. I’ve had optic nerve damage for as long as they’ve been taking scans of my eyes but until last year, I didn’t have any visual field defects. The only treatments for glaucoma involve lowering inter optical pressure. My pressures were never high. Lack of blood flow to my optic nerve from my chronic intractable migraines is killing my nerves. Despite my neurological team’s best efforts in finding preventative medication, the only thing I can do is manage my symptoms. The migraines have to run their course which means the optic nerve will continue deteriorating unless my brain suddenly stops misfiring on its own. At the rate I’m going, I’ll be totally blind in my left eye in 5 years or less. The rest of my visual field is horribly distorted from the visual migraine so I can’t even tell what I’m looking at most of the time. Glare has me unable to see anything but lights any time electric lights are brighter than the daylight and any time the sun can touch my eyes. All this and knowing it’s only going to get worse and I find it just a minor annoyance. All because I prepared by acquiring new skills to so I could continue to do the things I want despite vision loss. Frame it a little bit like a puzzle. What’s the missing piece to make my life whole? I love to read and have a hard time understanding speech. So I learned Braille. Problem solved. I tripped over curbs walking at night so I got a cane and learned to use it. Problem solved. I couldn’t read the computer screen for more than a few minutes even with it magnified and high contrast. I got a screen reader and a Braille display. Problem solved. On and on. The only time I’ve been depressed with this outlook on life was last year when I got a migraine that was so bad for so long (this was also the same time my vision distorted really bad) that I lost my ability to think clearly. I couldn’t hold a thought in my head long enough to finish it to problem solve. I was practically a vegetable for 7 months. It was horrible. If you still have the ability to think, you just have to work on solving your problems. Turn vision loss into a minor annoyance by finding a way to do what you want anyway. It may be really hard at first because the depression is so deep and maybe you need a chemical jumpstart (As in see psychiatrist). No shame in that. Whatever gets the job done!

RP here. I’ve had the cataract surgery and it actually helped in some ways. They implant a lens in your eye and so my distance vision became clearer and better. The downside being that I now have to use reading glasses because the lens doesn’t adjust like your natural lens to objects close up. Good luck

I have RP. Been dealing with it for three years. Losing vision is a loss, and you should mourn that loss.

What helped me to cope was two things:

1) Joining the National Federation of the Blind and talking to people who had been through what I had been through
2) Attending rehabilitation to learn a new set of skills to live the life I want.

I have found that there are non visual techniques for almost everything. I have had to give up very little of what was important to me. Though I still really miss carving canyons on a motorcycle. I still camp, hike, and work.

With the right training being blind is inconvenient but it doesn’t have to control your life.

Feel free to send me a PM. I am happy to talk more about it.