Bring your karma
Join the waitlist today
HUMBLECAT.ORG

Blind and Visually Impaired Community

Full History - 2014 - 09 - 19 - ID#2gvlhg
13
Currently with sight, but told I should expect to go blind. Please advise. (self.Blind)
submitted 8y ago by Faldorn
I have recently been informed I should expect to go blind. I have normal sight now, save a new blind spot in my peripheral vision (I'm told it will grow and I will have more over the years). The cause is optic nerve atrophy. We don't know the rate yet. It could lose most my sight in 5 years, or maybe just be partially blind for 20 years. (Not sure yet.)

I am honestly rather scared, but I know I will eventually be okay with it. I actually hyperventilated and passed out in the doctors office when I started realizing the seriousness of the diagnosis.

I'm worried about the expected stuff. Being financially self sufficient, functioning normally (cooking, cleaning, getting groceries), maintaining friendships. Finding someone to love and be with the rest of my life (I currently have someone, but afraid of how this will be handled, over time, as it is a burden and we are not yet married).

I was wondering, was anyone else here in my situation previously, and how have they handled it over the years / any advice on how to prepare / move forward.

I'm in my early mid 30s and I'm a computer programmer, if that is relevant to any advice that might be given.
dmazzoni 8 points
If you're interested in continuing to do computer programming, it's a pretty fantastic career to continue to do as a blind person. If you learn to read braille, a refreshable braille display is great for coding. These days there are tons of accessible web sites and apps, but as a programmer you could adapt those that aren't already accessible and use them anyway.
homeschooled 6 points
>Finding someone to love and be with the rest of my life (I currently have someone, but afraid of how this will be handled, over time, as it is a burden and we are not yet married).

If she loves you, this won't change anything. You can also find someone who will love you despite the "impending doom" coming your way. My boyfriend has RP and it's a possibility he'll go blind and I don't care because I love him and that's something that is a part of him, so of course I take the good with the bad. The things you're worried about are things that someone you love will help you with. And your friends/family. You will be OK. It's normal to be very scared though, I would be too.
Faldorn [OP] 5 points
Actually, 'he' (As if being blind wasn't going to be a minority enough, I'm a gay blind person).

And I know, I should stay optimistic. It is just that before this happened I was always an assume the worst, hope for the best, project somewhere in the middle sort of person. I'm a little shaken because the worst usually doesn't happen, and now that it has I'm temporarily leaning more worst case =P Anyhow, thanks for your kind words. He does love me, but we've only been together 9 months. So it is difficult for me to stay optimistic, even if there is room for it. Anyhow, I may be rather sighted for a few more years to come. So I'll have time to grow what I have without being a burden. I hope! Here is to settling down and building a domestic life with someone and not just me and my cat =]
homeschooled 4 points
Ah, sorry that my subconscious is stuck in the past! :) It will be difficult to stay optimistic, but at the end of the day, being negative won't help, so you might as well make the best of the situation. If you are negative about it, it might scare the people around you into being scared too, you know?
Faldorn [OP] 3 points
Absolutely. I'm just still in shock. Found out just yesterday. I am trying an antianxiety medication for a very brief period (never been on something like this. It feels weird), and I'm pretty even right now. I just need to get past the shock phase and then rev into planning mode. I am extremely fortunate to have time to prepare. (I'd love it to be 10-20+ years, but may only be 5)
kissitallgoodbye 2 points
I was with my guy for a little over a year when I was diagnosed with retinitis pigmentosa which is similar to yours... slow loss of vision, high likelihood of total blindness within only a few years, no peripherals anymore. We're married now, so theres some hope. I found learning Braille by sight with Memrise really helped, and I just got some Braille stickers for my laptop keys to help me learn by feel. Ive had many a panic attack and cried myself to sleep more times than I can count when the weight of the diagnosis fell on me. Im a lot better now, its been almost 2 years. Still terrifies me that I wont be able to be fully self-sufficient or maybe not even be able to know what my children will look like. There are programs to read screens and medicine is making huge strides so fingers crossed on that.
Faldorn [OP] 1 points
Thanks. Reading this actually helped make me feel better, somehow. Any advice for what I should do now while I have some solid sight? (Besides learn braille?)
I know it sounds silly, but I've actually been practicing doing things with my eyes closed (Vacuuming, etc). Just to make myself feel more comfortable with the inevitable.
kissitallgoodbye 3 points
Ive done that too. Showering is trickier than youd think. Or maybe Im just clumsy (oh wait I am).

See as much beauty as you can? Just watch the world. It sounds hella cheesy but just take a step back and look at your own city with tourists eyes. Take pictures and look at them over and over. Memorize the faces of people you love. Expand your vocabulary so you can describe things better - I just told my dad that the brakes of a car I just took for a test drive (itll be in my name only, I wont be driving it for real) sounded and kind of felt gritty, like how it feels when you get sand in your shoe.
Bob_0119 3 points
I am so sorry to hear about you prognosis. I was born with bad eyes, so I never really knew any different. I, much like you, hope for the best, plan for the worst. Here's what I'd do.
1) Don't rush out and get a cane just yet. No sense going out and buying a bunch of assistance devices until you know that you'll use them.
2) In my state, there is a department for the blind a visually impaired. Check to see if there is something like that where you live and reach out to them. They may have support groups, and classes that may help you prepare for an eventual loss of vision. They can sometimes provide assistance devices and training for when you begin to struggle.
3) 5-20 years is as much an educated guess as anything. My pediatric eye doctor told my parents I would be fully blind by the time I was 25; I'm 40 and while my vision has dropped into legal-blind territory, I can still see.
4) Don't let your prognosis consume you. Don't be a "blind, gay man" just be you. I'm not sure if it makes sense, but if you get bitter about the hand you're dealt, you may just run off those who would still love you for who you are. Don't lose that guy. Get used to accepting and asking for help. Let those who love you help you. It can help them not feel helpless about your situation.

Not sure if it helps, but you can get through this, and you won't die alone. If you can get through life as a gay man, you're strong enough for this!
ObscureRefence 2 points
Late to the party, but just wanted to give an "I know that feel, bro." I'm 30, losing distance and night vision, and I'm trying to come to grips with what I can and can't do. I recently got told that my hopes for a surgical fix are off the table, and you bet your ass I cried for half an hour.

On the plus side, my friends have been super helpful and my biggest problem with asking for help has been my own fear of being a burden. Figuring out some creative solution for getting around my problem and having people help without making me feel bad are great feelings.
jage9 2 points
I was pretty much born blind so can't relate to the whole losing vision bit. But networking with or surrounding yourself with other successful blind people could really help. As mentioned before, computer programming is a field that lots of blind people are in, especially since it often is performed with command-line tools depending on the language. I would assume, though I could be wrong, that being gay would help you a bit when it comes to knowing what discrimination feels like and how to deal with it or spin it in a positive direction. But in the long run, I think you'll do fine.
[deleted] 1 points
[deleted]
alwaysoz 1 points
I was diagnosed with macular dystrophy ~18 years ago while I was a teen. Centre part of the eye does not see and that blind spot grows over time and your vision worsens. Because it is gradual, you learn to adapt and in most cases you don't really notice it. It is tougher when you are in a transition period where your life is not settled. Going from high school, to uni then to work is tough because you have to address the issue of your sight loss and this is where you encounter barriers, discrimination especially when looking for work, love etc.

Your situation is however a lot more manageable because you are in your 30s, have a partner that loves you, and a career in IT. For starters You are in the right career for someone who is losing their sight because accommodations are easy and adaptive tech aids readily available. (I use Zoom that comes with a Mac) Now if you were a doctor, pilot, cop, or drive for a living then I would worry financially.

Also, when I got diagnosed almost 2 decades ago, research into degenerative conditions was already looking into implanting regenerative stem cells. They have done testing with animals in the meantime and I'm happy to report that 12 Sep 2014 in Japan, $1 Clinical trials could go on for up to 10 years before they perfect the procedure and address any risks and complications.
Hope this helps
Faldorn [OP] 1 points
Thanks for your reply. I am curious, from the sounds of it you have a loss of your central vision (that might not be true, you mention a blind spot in the middle of your eye.) If this is the case, how easy is it to read with the peripheral vision you have?
alwaysoz 2 points
Without giving too many technical details, macular dystrophy is a genetic condition that affects your central vision. The macula is responsible for central vision and when the macula is damaged, people have difficulty reading print recognizing faces or, driving. Typically, people with macular dystrophy maintain peripheral vision, and daily activities that don’t require fine central vision such as walking, running and dressing are not affected. In my case, it is advanced at 20/400 both eyes and for perspective it means I'd have to be 20ft away to see something that is visible at 400ft away with perfect vision 20/20. So I do rely heavily on my peripheral vision. However, reading, recognizing faces requires central vision because your eye sees the small disparate details and your brain forms a picture of what you are looking at. So to answer your question it is not difficult to read, it is actually impossible for me to read without tech aids. I cannot read news print, medicine labels, bus route #s, maps, price tags, text messages etc. Fortunately, I can find most of this information online and all I have to do is plan accordingly when I leave my computer behind.
This nonprofit website is run by volunteers.
Please contribute if you can. Thank you!
Our mission is to provide everyone with access to large-
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
©2023 HumbleCat Inc   •   HumbleCat is a 501(c)3 nonprofit based in Michigan, USA.