IamA 25 y/o going blind (but I have a neat-o eyepatch) , AMA!

You played with your pee-pee too much, didn't you?

Only when it asked politely.

Are you going through any training for when you become fully blind? I have a friend who specializes in blind rehabilitation, for those becoming blind.

I did learn a great deal after I was diagnosed. Braille, orientation & mobility (using the cane), things like that.

That's awesome of your friend to help out those that need it!

Do you happen to use Jaws or Magic for computer use? Maybe Zoomtext? If not, what software do you use?

I support people at work that use the software, and it's pretty interesting. One of the people has your same diagnosis, and for about as long.

In fact, I did used to use both Jaws and Magic! Much preferred Magic, mostly because I don't like being talk at. Personally, I prefer using the Mac's built-in accessibility stuff. I just hold command and ZOOM WAY IN.

If you could choose the very last image you saw what would it be?

My beautiful girlfriend's face.

What about your current girlfriend? ^**Update: I just received confirmation from Satan that a seat is being held for me.

Savage

Zero chill

Low blow, didn't even see it coming.

I really didn't.

would you trade your hearing to get your sight back?

Hmm. Probably not, mostly because I'm used to it.

Nah, j/k. Give me my sight back.

But for real, I'm mostly used to it.

Go deaf in one ear blind in one eye

Already more than halfway there!

Do you have any pain? What coping methods do you use? Sorry this is happening to you. You seem so positive though. You'll be in my thoughts and prayers for a cure!

My eyes are constantly in pain. I take 3 drops twice a day in both eyes to reduce it, but I also self medicate with marijuana (glaucoma has to have some perks, right?). I'm mostly used to it. The pain is almost background noise at this point, if that makes sense. It only gets real bad when my eye pressure goes up, which can happen after major physical stress, emotional stress, being up too long, altitude shifts, or just random happenstance.

The only thing to really do is have a sense of humor about it. Otherwise, I'd just cry all day. Trust me, it's much harder to see through tears!

Thanks for your kind words!

My question was going to be do you get medical marijuana.

Nah, but I'll gladly take some if you're offering.

My state hasn't legalized yet.

My eyes are constantly in pain. I take 3 drops twice a day in both eyes to reduce it, but I also self medicate with marijuana (glaucoma has to have some perks, right?). I'm mostly used to it. The pain is almost background noise at this point, if that makes sense. It only gets real bad when my eye pressure goes up, which can happen after major physical stress, emotional stress, being up too long, altitude shifts, or just random happenstance.

I'm not sure what the options are but if your eyes become completely useless, can you remove them to relieve the pain? Or would you keep them if they could somehow be repaired in the future?

I'm not sure what I'd do, honestly. I'll def keep you posted.

By 99% gone, does that mean complete darkness? Or can you make out any shapes and this sort of thing?

Mostly darkness with some VERY minor light detection. My left eye's pupil is always WAY bigger than the right's because it's straining to take in light or find something to focus on. This is partly why I wear the patch: to cut down on eye strain.

What are the most common well-meaning trying-to-be-helpful things people do that are actually annoying, insulting, or depressing?

Excellent question!

When I ask what the instructions are for making food, don't tell me I have to take it out of the box. Give me numbers! Just generally when I am asking for simple bits of info, people feel the need to over-explain like I've never done it before.

Will you eventually go double eye-patch?

Man, you never go full eyepatch.

What do you take me for, an amateur?

Since you're only 25 do you think you will live to see again with advancements in medicine. Stem cell therapy, implants ect? http://health.ucsd.edu/news/releases/Pages/2014-09-22-eye-tranplantation.aspx https://www.stemcell.ucla.edu/news/promising-results-stem-cell-trial-blindness

I very much hope so!

My dream is to finally be able to drive one day. I feel like my teen/college years were squandered by the inability to drive wherever/whenever I like.

Hey if you want we can get married and I can give you some money and you can have like laser robot eyes

no homo though

I'm totally down. Robot eyes would be ballin'.

My girlfriend might get upset, though.

What do you do for a living? How has losing your eyesight impacted that/how will it impact it?

Currently I host podcasts and write some stories here and there. Mostly trying to focus on things not sight related, haha.

I went to school for film (after the diagnosis, because I'm stubborn). but that didn't pan out because sight is mandatory at a certain point, haha.

AS far as how it will affect those things... Unsure. I do a TV podcast now, so I wouldn't be able to watch TV. I'll find some other nonsense to talk about, though.

As a dude who loves podcasts & also hosts one, would you mind linking to yours? Not just to give you an excuse to plug them, but because I'm always interested in finding something new to listen to.

Hell yeah I'll plug my mediocre shows!

I host a few shows on the Mild Fuzz Podcast Network, including Almost Cancelled (TV podcast), Super Podcast 64 (Nintendo podcast), SUPER ULTRA GOLDEN (anime podcast, not the host but whatever) and I regularly appear on others.

We're on YouTube, iTunes, & Stitcher. Thanks for the organic plug, dog! What's your show?

EDIT: Links! TV Podcast on iTunes: https://itunes.apple.com/us/podcast/almost-cancelled/id881353946?mt=2 Nintendo Podcast on iTunes: https://itunes.apple.com/us/podcast/super-podcast-64/id1021972163?mt=2

If you insert some links into your comment I guarantee you'll get a ton more people checking them out.

We are a lazy people here.

Right you are. Thanks for the suggestion!

Good luck! Always a lot of interesting stuff out there to talk about.

Thank you! I wish you good luck in life as well.

Did you switch to school for something else?

Podcasts are blowing up right now, so I hope you can catch that wave.

No, unfortunately I dropped out. Figured I'd get out before I was in debt up to my mostly dead eyeballs.

God, I can't even imagine having to go through this. Sounds like you're handling it better than most. What do you think you'll miss most about seeing? Have you started preparing for when you're completely blind (like learning braille, etc)? There are so many questions, but I don't want to inundate you...Thanks for doing this!

The biggest thing I miss is just being able to pick up a book and read it. I used to be an avid reader. Book a day kinda guy. But that's not feasible anymore, so it's exclusively audiobooks for me. Once it's all gone... I'll probably miss the faces of my family and friends the most. Dark, perhaps, but honest.

I learned Braille back in high school "in case." I also learned how to walk with a cane... across streets... and freeways... blindfolded. Problem there was they kept taking me out of my classes to teach me, so instead of getting as leg up on the future, I fell behind on my studies when I still could've learned by actually reading. But that's a whole other story about public school districts being screwed up, haha.

Please, feel free to ask anything. My shitty experiences may at least amount to an interesting read!

Wow, thanks for the honest replies. I'd be horribly sad to not be able to read books anymore.

I know it's juvenile, but way back when I was a kid, I was always afraid of going blind b/c I just knew my sisters would dress me like an idiot and let me go out in public like that. So I've gotta ask, how do / how will you deal with dressing yourself? Is there a trick or technique to it?

Do you think you'll get a seeing eye dog?

Haha, I'm not THAT blind yet!

I dress myself much like you do. I'm nude and then I put on some clothes. We all sleep nude, right? Right?

I might get a dog once it does get that bad. A friendly pal that's with me at all times sounds pretty comforting. I'm just worried about stepping in his poop...

We all sleep nude, right? Right?

I'm 32, just started doing this a couple years ago.

I cannot overstate what I was missing.

Prior, used to always do underwear or underwear & undershirt

Take it from a man who can't see well: FEEL THE SHEETS.

Get that tush all up in that thread count.

You've made the right choice in life.

I didn't think you were that blind yet, but I mean, when you are blind blind...have you thought of that? Jesus, I'd be freaking out.

At least if someone bitches at you about you not picking up the poop, you can break out the "Way to yell at a blind guy" thing...

No worries. I freaked out for a long time, but that only makes the situation worse (1. Because stress drives up my eye pressure which leads to more nerve damage which means less sight & 2. Because that only made the people around me freak out, too, and then who is going to drive me to Taco Bell at 3 am?!).

Luckily, I am a male who only requires a shirt and pants to enter most buildings so that's not too much to handle. I keep all of my stuff fairly organized, just in case.

Not sure if you are serious about the poop but some dogs are trained to shit on command

I was just joshin'. I'm a bit of a smartass, haha.

Have you considered getting a skin tone eyepatch with a drawing of an eye on it so it's less noticeable?

Perhaps if I was more of a milk drinker.

My 23 year old son has been blind (and deaf) since birth. We've always felt that having always been blind is better (emotionally I guess) than having sight and losing it later in life. What do think about that?

I would agree. Part of me wishes I was always this way so I didn't know what I was missing. I'm kinda in a weird spot between "normal" and blind where it's hard to relate to anyone or be able to accurately express what I can/can't see.

Maybe being blind from the start simplifies things, but maybe it doesn't. It just sounds simpler to me.

I hope the best for you and your son.

Pshh eye patch are so 1600's.

Was it interesting to watch the degradation of your sight?

I had eye strain even though my optic nerve was killed. The brain wants you to see so bad and It tries so hard.

Psh, I know, but I'm bringing that shit back. In a big way!

It has been, and will continue to be, interesting to slowly watch my sight fade. Sometimes it feels like I literally see a different world than everyone else. Not a better one, mind you, but certainly different!

Can you expand on how you were diagnosed? What were the first symptoms you experienced?

Well, I was a very avid reader but even I put off my summer reading. Mostly because they were crap books. Regardless, it was time to read The Old Man and the Sea before I began high school. However, I realized I couldn't make out the text anymore. I ran into my mom's room saying "I can't read this," holding up the book. She replied with "I know, I know. It's a pretty boring book." I clarified and then things got scary and weird. We went to a bunch of specialists until someone finally diagnosed me.

Same thing happened to me, but I was 19 and reading a book for fun. I have Best's disease, which hasn't affected me nearly as bad as your glaucoma, but this AMA has made me think about preparing myself for the possibility of blindness.

It never hurts to be prepared. Good luck to you!

Real Question. I too wear an eye patch (left eye, 21 years now). Where do you get them? My supplier has gone away and I end up with the dumbest looking patches.

The World's Best Eyepatch

http://thebesteyepatch.com

They are fantastic. Made of silicone, so totally durable and washable. They are made by very lovely people that have a passion for this stuff. Plus, tons of fun colors to coordinate your outfits with!

When i went to the eye doctor a few months ago he said the pressure behind my eyes was so high he thought it was glaucoma and he had to run some tests... luckily i don't have glaucoma. I'm only 21 but my sight has been getting progressively worse every year since i was in the third grade. I have so much pressure in my eyes at times it gets very uncomfortable. I am pretty concerned. Is this how it started for you?

YES.

Average pressure should measure between 10 to 20. When I went in, my left eye was at 51. They said I should've been screaming.

What does blindness look like? Is it just darkness?

Close your eyes in a dark room.

BOOM

Blind Simulator 2015.

What was your reaction when you got to know about your disease for the first time?

No lie, I laughed out loud. Hard. It seemed absurd to me. I find out I'm going blind 4 years after my dad died to the day. The day before starting high school. Seriously, wtf? You can't make up that kind of shit.

A lot of the nurses cried, though.

Ha you sound like me, my dad died of ALS, my favorite book at the time was about a man with ALS. The laugh cry.

You have an inspirational attitude, not because it feels like you never hurt but because it feels like you've accepted the pain and are focusing on other stuff. Which realistically is the only way to deal with chronic pain (been there, my hands hurt every day for years, has gotten so bad I couldn't dress myself). Anyway, stay strong, and I hope you can remember how to find this place again if/when you get knocked off track. Thanks for sharing.

Keep strong! We got this shit in the bag.

Speaking one dude to another:

Have you figured out a way to use this to get you laid?

Because unfortunately this is how I would spend my time.

Pfft. Of course I have. ;)

The eyepatch works, my friend. The trick is reading body language because I can't read faces.

Have you considered opening up a law firm called "blind justice"?

I tried, but this Murdock guy ran me right outta town.

Have you ever considered taking up a life of piracy?

Ha. I've heard every pirate joke in the book.

Also, yes.

You'd make a great Dread Pirate Roberts

I'm hoping to make a great AMA first, but we'll see if I have time.

Would it be alright for me to ask what do you do in your spare time to entertain yourself? Also how big of a difference do you notice in how "powerful" your sense of hearing, taste, etc is now that your eye sight has faded? Also, you seem like a really nice guy I hope one day medical science finds a way for you to see again.

Of course you can ask that! Mostly rot what little sight I have on the computer or video games. I have to use magnification programs to read anything on here, plus I sit SUPER close to the TV to do anything. But, I'm stubborn and I love my Mario games too much.

I do feel that I sense things around me more, but only because I make a concentrated effort to do so. My hearing is actually kind of bad because I have awful wax build up. Taste is nothing special compared to the usual, as far as I know.

Thanks for the kind words!

hairy palms too?

Mostly just a hairy ass.

Everyone here is asking you relevant questions, I just want to know how you traveled one month into the future?

Damn, you caught me. I don't know. I guess I stayed up too long. It's like that Angry Beavers episode.

Are mirrors real?

I hope not. If so, I look like trash today.

Have you investigated the feasibility of getting one of these bad boys?

If you have a direct link to one, I will proudly wear it every day in honor of your services.

If you had the opportunity would you have your eyes replaced with the new bionic eyes they make? Turn yourself into a real life cyborg.

Unfortunately, my optic nerves are too damaged for such a kickass procedure. A man can only dream.

Going blind, how does it limit your freedom? Can you cook? Clean? Go shopping? I guess it's all standard questions that any blind person could answer, but as a young independent adult, I'm curious.

As a young independent adult, I do everything I can by myself. Even if that means it takes way longer. As I've said in other replies, I am quite stubborn. I pride myself on being a good cook, cleaning up my messes, paying my bills on time, walking miles just to get orange juice, whatever I need to do. I'll take pictures of whatever box/bag/Lunchable I plan on eating and enhance that mofo until I can read the instructions.

I always make sure that wherever I live, I'm immediately close to a grocery store. At the very least, I shall feast.

Have you visited any places just because you'd know you wouldn't be able to see them in the future?

I've been making more of a point to travel recently. Went to New York and LA so far. Worst part is the altitude screwing my eye pressure. Talk about having a red eye after a red eye.

Where else should I go?

How do you know when you have finished wiping after a poop?

I don't. I"M STILL WIPING.

Oh wait, no more brown on the paper. Guess I'm done.

Are you... pretty good? ^{PleaseGetTheReference}

I so wish I got the reference...

I feel defeated. Thanks for making the blind guy feel worse!

do you ever tip your eyepatch and say m'lady?

Only when I want women to leave me alone.

....justin?

...No?

Will you get biotics instead?

I assume you mean bionics, as in a bionic eye or something. If that's the case, no. My optic nerves are too damaged to have any response for a Terminator-style robot eye.

If that's not what you're referring to, then I am out of the loop.

First off thanks for doing the AMA. I have a few questions. Are you scared of going blind completely and if so what are your biggest fears? When you found out, how did you cope with it and how do you feel about it today? As I understand it, when someone loses one of their senses be it hearing or sight, the other senses get stronger. Have you experienced this at all and if so can you explain how?

Yes, very very very scared. But I heap on copious amounts of dark humor to ease my constantly paranoid thoughts. My big fear is becoming totally apathetic once the sight is totally gone. I love visual media so much, I may just be depressed indefinitely.

I didn't cope with it well. At all. I found out the day before I started high school, so the whole experience was pretty shit. Kids are dicks anyway, but throw in something they don't understand and isn't immediately visible to them... no bueno. It's really the driving motivation behind the eyepatch: to show people that SOMETHING is going on in the eye region of my face. I'm still dealing with it, but I'd be a liar if I said I was totally cool with it now.

No extra senses that I know of. Kinda got ripped off on that one.

Does your left eye still look normal, or is it clouded up or something?

It appears normal, outside of the pupil being super huge because it's trying to detect light. Either that, or I get zombie eye where it's all bloodshot and hurts like hell. That happens near the end of the day, usually. At the very least, the eye will sometimes wander and be one of those crazy lazy eyes.

But it typically looks normal (or at least that's what they tell me).

Did any of the eye drops work for you? I was diagnosed with Glaucoma only in my left eye in 2012. Though it was already too late to save anything but light perception they put me on the eye drops and did the filtration surgery.

They work decently for me. Initially, they actually did more harm than good, but my eyes adjusted and the drops seem to do fine (except for stinging my eyes).

So I'm assuming your vision in the other eye is gradually going away. Is it actually noticeable from day to day, or is it only noticeable if you compare your current quality of seeing to a year ago/a few months ago?

Tough question. I don't have pics of how I saw a year ago, but it's definitely worse. Day to day would be hard to tell.

The shitty answer is that it sneaks up on me without realizing.

2-Part question if you don't mind.

1. What do you do for a living?
2. What do you do for entertainment?

Thanks in advance, and good luck!

1. Technically,. I only make money from Social Security Disability. However, I am attempting to make a career out of podcasting (crazy, but does't require sight!)

2.Listen to audiobooks, hang with friends, drink too much. The usual for a 25 y/o, I assume, outside of the whole driving and total independence thing.

Play any instruments?

I always told myself that if I went blind I'd learn blues guitar and make a living at it.

Used to play trombone. Boner 4 life!

Do you have some kind of 'bucket list' of things you want to see before it all goes dark? Like going abroad to see a famous work of art or some kind of natural grand vista?

I'd love to make a movie and see it projected on the big screen.

Realistically though, I want to travel Europe.

Do you have plans to ever buy a parrot?

No, but I have plans to find some booty. How's yers lookin'?

Hey, not sure if I'm late, but is a transplant an option for you in the future? Or do you just have to face the inevitable?

If so, how does it make you feel knowing that you will eventually never be able to see a thing?

I assume as long as my optic nerve is in decent shape, a transplant could theoretically be possible. I'd really need to look into it further, but it sounds super fucking scary haha.

Forgive my ignorance, but is there any potential for a cure for this?

Thanks so much for your uplifting attitude and spirit.

No cure at this point. Let's hope for something in my lifetime!

Would you be signing up to experimental treatments that have the possibility to bring your sight back? Or would you be more worried about a worse outcome?

I'm far more frightened of losing what I have than hopeful something will return.

Have you ever considered suicide?

What sight will you miss the most?

I have, but not over the eye stuff. It was a bad break-up and the thought didn't linger for very long thankfully.

I think I'll most miss the eye sight. Sunsets are up there, too.

Hey man, I'm 29 years old, been living with glaucoma for 13. My sight was saved by an amazing surgeon, it's the reason I still have vision in my left eye at all.

The eye pain is the worst. I'm on 2 drops a day into each eye to manage it, and I'm terrified of it going any further. and the headaches, fucking hell.

Anyway, I understand your pain and have a few questions.

Where do you receive treatment, and what are your eyedrops?

What's your favourite kind of music, and what are you currently listening to?

Do people treat you like an invalid, even though you're thoroughly capable?

Do you have a job?

Always nice to make the acquaintance of a fellow eyedropper.

Mine are Alphagan, Lumigan, and Kosopt. Might be spelling errors there, but I'm too lazy to go hold my magnifying glass up to the bottles.

I'm a sucker for 90's alternative. My all-time favorite band is Harvey Danger. So underrated. Check out their album "Little By Little..."

They do when they don't know me very well. It's pretty much the worst feeling ever. Other than AIDS or genocide, of course.

About a year ago I started getting sudden bursts of severe pain located t the back of my eye. THen lights started to get rainbow halos around them. Recently, I've been getting little black/greyish floaters that appear in my vision, then slowly go away.

I'm worried it could be glaucoma. My optometrists says my eyes look fine, but I'm seeing a specialist soon.

I also get a weird starburst effect when looking at bright objects. They break up into a feld of black and white, ill defined shapes.

I don't want to diminish your struggle, but do you recognise these symptoms?

Not my symptoms exactly, but there's some similarity in there. Definitely see a specialist.

I've always wondered this: what do you "see" from your blind eye? Is it black? Is it something indescribable?

Mostly black, I guess. Some hints of light around, but mostly black.

[deleted]

Maybe? Hard to tell. I grew up constantly attending family funerals, so I was coping with death before the blind thing. Seems a bit trivial by comparison.

Have you tried the "nice to meet you" and grab a tit move yet?

Nah, I'm not really into the sexual assault scene.