IamA 25 y/o going blind (but I have a neat-o eyepatch) , AMA!
I was diagnosed with glaucoma and macular degeneration back in ’04, the day before I started high school and on the 4th anniversary of my father’s passing. I’m a pretty fun dude. I’m basically going blind slowly and my eyes are very sensitive to light (especially the left one, hence the eyepatch). I’m great at parties. My left eye is already 99% gone and the other is making it’s way closer and closer to being a useless piece of goop in my head. I am legally blind in the “good” eye and can not drive as a result. If I didn’t wear the patch I would would look seemingly normal. Problem is, that’s not the case and I am quite blind (I’m just good at faking it. But seriously, get your eyes checked, kids.). You won’t offend me, so ask whatever you like! The way I see it, this can only help me better explain my situation to strangers (which is a regular point of confusion for most).
My Proof: http://imgur.com/au0A2iL
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.
Will you eventually go double eye-patch?
Man, you never go full eyepatch.
What do you take me for, an amateur?
If you could choose the very last image you saw what would it be?
My beautiful girlfriend’s face.
Is your girlfriend hot or do you, like, not even know?
She is very beautiful, or so she tells me.
Nah, seriously, she is fantastic and I love her very much for everything that she is and strives to be.
If you don’t mind me asking, how’s your relationship with her changed since you were diagnosed, if at all?
I was diagnosed long before she came along, so she’s pretty much up to speed.
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.
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.
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 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.
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.
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.
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.
Did you switch to school for something else?
No, unfortunately I dropped out. Figured I’d get out before I was in debt up to my mostly dead eyeballs.
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!
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
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
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!
You played with your pee-pee too much, didn’t you?
Only when it asked politely.
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!
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!
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.
Is the blindness a result of the glaucoma or the macular degeneration? Is the eye pain a result of high pressures?
The blindness in my left eye is due to glaucoma. Before that diagnosis, I already knew I had amblyopia (which is a fancy way of saying lazy eye). When I hit puberty and the glaucoma hit, but dumb eye was as affected, leaving it to become the “good” eye. The macular degeneration affects both, but that’s why I am slowly going blind. The pain is totally from eye pressure, which is regularly 2 or 3 times what it ought to be.
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.
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.
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!
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?
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?
Do you think you’ll get a seeing eye dog?
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…
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.
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.
What does blindness look like? Is it just darkness?
Close your eyes in a dark room.
BOOM
Blind Simulator 2015.
What about the “lights” that moving around that you see after some time in the dark? You know the same ones you get when you press on your eyeballs/rub your eyes too hard. Are they there or is it pitch black?
They appear from time to time. Pisses me off more than anything. Get out of here, random lights!
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 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 ever considered taking up a life of piracy?
Ha. I’ve heard every pirate joke in the book.
Also, yes.
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.
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 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).
PS4 or Xbox One?
Wii U!
But also PS4.
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).
What do you do for a living?
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!)
What do you do for entertainment?
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.
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.
Have you ever considered taking up music in some way? Or maybe you already play a musical instrument? That’s something that doesn’t require sight necessarily and can be immensely rewarding. Good luck my friend!
I actually used to play trombone. I stopped after the vision got too bad. I was always 1st chair, so I made an effort to memorize every sheet of music as opposed to just reading it during concerts. The stress of remembering all the songs alongside trying to adjust to new sight levels, learning Braille, taking my regular classes, and just being a teenager eventually got me to quit. I’d love to revisit it. Too bad my neighbors would murder me, haha.
Have you undergone any surgeries? Filtering bleb or trableculoplasty?
No surgeries as of yet. My doctors seems almost afraid to do it, so I’ll not tempt fate haha.
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.
Are you religious? Has this change in your life sparked a religious surge?
No, and not really. I’ve never been a particularly spiritual person.
How do you plan on working around your new limitations? How much do you know about sensory substitution and echolocation?
I plan on making my own job to fit my own needs. I hate the idea of dragging down a pre-existing group with my disability.
Can you see in your dreams (like better than in real life)?
I rarely dream, honestly. When I do, I don’t notice any significant difference in visual quality. I’ve been mostly blind for 11 years now, so maybe I’m just used to it.
Do you think you have a disadvantage/advantage compared to other blind people since you are going blind later in life?
There are definite advantages, mostly that I understand how to get around in the world. I walk around pretty normally and most people would’t even know if I didn’t tell them or didn’t have to pull out a magnifying glass to slightly read, haha.
If you had your eyes checked would that have prevented this?
If I had a better eye doctor growing up, yes. But I had a shitty one.
How much pressure do you put on yourself to do “this and that” from “what movies to watch” to “get married now so you can see all of the event and remember the pictures”? I would imagine I’d go pretty crazy just having the choices bounce around in my head and not doing anything. What keeps you “planted”?
I always try to remember that my problems are insignificant in the eyes of the planet.There’s so much to do in the world and while I may be limited by my particular scope, I find it more important to focus on other’s point of view than my own. The only thing I feel I must do is try to understand the scope of everyone else’s world. You can’t learn and grow and change without perspective, so I choose to look through your eyes and not my own.
Mine are crap anyway.
