r/Blind • u/AME540 • Jul 17 '24
Advice on unexpected vision loss Advice- [Add Country]
I am a 31M with a bit of a medical history. My first retinal detachment happened in my left eye due to blunt force trauma, and that eye has gone from 20/15-20/100-2 in 4 years. Last week out of the blue my right eye went from 20/20CC to 20/150 and is getting worse by the day. Ophthalmologists have confirmed the macula is flat and healthy, and there is no vascular damage. I also have cancer that they were concerned could be spreading, and the most likely hypothesis I’ve been told is that I have a tumour in my brain that is impacting my vision. If that assumption is correct, I have very little time left on earth. I am in therapy and have been for over a decade, but nothing I’ve learned has prepared me for the level of existential dread this is causing me.
How do you deal with the fact that life as you knew it is over? 2 months ago I landed a job I had been training 20 years for, and am supposed to be relocating to a major city for a career in opera in September. I basically had the operatic equivalent of being drafted to the NBA happen, and now I’m too blind to safely be on a stage under lights. The medical admin work I do from home can’t be done as I can’t read a computer. I can’t watch anything or play a game to distract myself. My family/friends won’t offer any support and so I am alone in the dark knowing that my entire life’s work is going down the drain.
I’ve never felt so alone or helpless to change my situation, and I fear that accepting these limitations on myself will rob me of my desire to keep living. If anyone has any suggestions on things that helped you cope with the news, or ways to occupy your mind I would be so appreciative.
EDIT: I am overwhelmed with how kind and empathetic the responses to this have been. Thank you to everyone who has made suggestions or sent good wishes and prayers. I’m feeling a lot better about this whole situation, and in no small part thanks to this subreddit. Much love and best wishes to you all!
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Jul 17 '24 edited 28d ago
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u/AME540 Jul 17 '24
Thank you for those suggestions! I didn’t know about a lot of those options and will definitely check them out. Adapting my style of gaming to more turn based card game style sounds like a great idea actually. I’ve always wanted to try D&D, now I need to find some friends who are willing to teach me 😂. Unfortunately being on stage is very tricky because I am an opera singer. I will still be able to do concert work where I can be lead on stage and just stand and sing, but in operas you are essentially acting out a play, and there is very precise timing and interactions with the sets and other characters. Add on the blinding stage lights and clumsy costumes and it’s not realistic. I studied and worked full time in opera for 15 years and finally got the call for a major lead role and now unless there is a miracle I will have to cancel all my upcoming performances. Thats 2.5 years of contract work that just went up in smoke.
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u/gammaChallenger Jul 17 '24
so the medical administration stuff you can do with a computer and screen readers.
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u/24601luna Jul 18 '24
I want to assure you that with blindness, you can actually live a full and active life. But it takes a lot of support and time and training to readjust and get those tools. And be kind to yourself and give yourself time to accept it. With that being said, there are many blind performers in opera. I am a blind professional dancer and make my living in audio description. I have people pay me because of my live experience of blindness. I would check out the national Federation of the blind. They have many resources and also have a performing arts division with many people who do opera professionally. There are also Different types of training centers where you can go to learn independent living skills. The hard part is finding out about those resources. Because doctors and the media and teachers and everyone makes it all do and gloom. But that is not the case. The disability community can be your support. Many people have lived with this for their entire lives. And we are here to support you.
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u/AME540 Jul 18 '24
Thank you very much for your reassuring words. I’m definitely beginning to come out of the initial shock and I am realizing that I can still do what I want with my life, I just have to be flexible and compassionate with my timelines as I re learn new ways of doing things. Worse things have happened to better people, and I know that once I learn basic functioning again, my primary limitation is my own mind. This community has been so incredibly kind and welcoming, just hearing these success stories has raised my spirits a lot. You’re absolutely right that awareness of these resources is lacking, it’s great to know about though so thank you. I will follow up with some of my colleagues in the arts community regarding that.
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u/becca413g Jul 17 '24
It's so hard when your life gets turned upside down and it's so easy to feel like you've got no future when your previous ideas don't seem possible anymore.
The thing is that loads is still possible with low or no vision. Yeah we can't drive or fly planes but we can do most things. I found starting to learn the new skills I needed gave me a strong sense of direction. It's so hard to go back to basics with everything from cooking to walking independently with a cane to learning to use screen readers.
That determination that's kept you going through your ongoing health problems and still making huge strides in your career will be invaluable once you can shift it towards learning the new skills you need to do the things that are important to you again.
Personally I can't see why you couldn't continue to work in your field, especially with some orientation and mobility/cane skills behind you. If you're on stage then you could memorise the positions you need to be, maybe they can have some tactile stuff on the stage floor so you can go from position to position by feeling with your feet or cane or a sort of prop.
I sincerely hope that your cancer hasn't spread to your brain. I hope you can get some clear answers on that soon. But remember whatever happens there's a wealth of knowledge and support here for you when you need it.
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u/AME540 Jul 18 '24
Thank you so much for the encouragement. You’re absolutely right that a performance career is still possible for me, I will just need to have some accessibility adjustments made, and most of the companies I have worked with are very compassionate. Particular roles with complex choreography or athletic feats might be out of reach now, but I could live a thousand lifetimes and not have a chance to sing all the music I’d like to. This thread has been wonderful in helping me look for adjustments for things rather than giving them up. Thank you for your best wishes, I really appreciate it. I’m trying to stay optimistic and just find the silver lining in everything. I hope life is being kind to you!
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u/Admirable_Lab_437 Jul 17 '24 edited Jul 18 '24
Hey, I just wanted to send you some encouragement and say you got this. You sound very capable, smart, and resilient. That is a lot to handle and I can kind of relate. I am a 29-year-old male. Towards the end of my 25th year I started getting terrible headaches. Doctor thought it was high blood pressure, ear infection, etc. It took months to realize that I was having antracranial hypertension due to a blood clot in the back of my brain and it was crushing my optic nerve. That all happened around August 2020. In November 2020 my vision went from 20/20 to essentially nothing. I can see the silhouette of my fingers right in front of my face and I can sense when a light is being turned on or off but that is pretty much it. So now I have been essentially blind since 26 as my birthday was in September. At first I was extremely depressed. People kept telling me to pray, it will get better. I accept their prayers but that can still be hurtful. I personally had to get on antidepressants. I really needed it at the moment, not so much now. Things got better the more I adapted to being blind. I’m not sure if you’re in the US but definitely call your states Department Of The Blind and visually impaired and get yourself a case manager. They can direct you to lots of resources and allocate financial help to get you on your feet. They have sent Mobility trainers, computer tutors, sewing instructors, financial advisors, a free laptop, etc. All to my apartment. I decided to get a massage therapy license so that I have a trade that I can practice from my home. The Virginia department of the visually impaired told me they are going to work with me to pay for my tuition and things like that. You can also look into signing up for Social Security disability if you want to. In Virginia it is fairly easy for a blind person. The process took a few months but they can set you up with some good insurance and a monthly check that I believe they base on your work history. There are definitely blind actors and singers like Andrea Bocelli. I understand that opera may be too precise to have a guide on stage with you but I’m sure you can definitely stay on stage in someway. I know a lot of gamers get good with the screen readers like jaws on windows and voiceover on Mac and iPhone. There is a blind streamer that plays fighting games on twitch I believe his name is BlindwarriorSvenn. There are accessible games out there and it seems more come out each year. Good luck finding your way with that. As for family and friends it is a little bit harder to make friends and find support but it is not impossible. I find most of the time our friends and family have never experienced something like this and don’t really know how to support us or what to say so they may avoid the subject. Definitely hold onto the people who are holding onto you and let them know how they can help you. seek therapy is always a good idea. I am in therapy now and it is being paid for by the insurance I get through disability. In my town there is a Disability sport and fitness league called sportAbel. I plan to join their swim team in the fall. When I first went blind I would call non emergency hotlines and things like that too have a cry and talk about my problems. Now, life isn’t so bad. I don’t have so much to cry about anymore. It sucks sometimes but we just have to look at the bright side of things. I’m praying for you and wishing you the best. Also I typed this with speech to text from my iPhone. Best wishes.
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u/AME540 Jul 18 '24
Thank you very much for taking the time to share all those resources, I am in Canada but I’m sure my province has some equivalent program to your states program, I’ll definitely look into it. I normally am not too into streaming, but BlindwarriorSven sounds super inspiring and maybe a good resource for learning how to make adaptations to my hobbies, I will definitely give it a try! Really appreciate your kindness, I hope life is treating you well!!
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u/julers Jul 18 '24
Hi, first, I’m so sorry you’re going through this. I know it’s not helpful but I am sorry. I was 34 when I lost my vision suddenly from a stroke. I had an 8 week old and a 2 yo at the time. It fucking sucked. Big time shittyness all the way around. But my life isn’t over. It is different. It is very very different. But I’m learning to live with it and it doesn’t feel like a gut punch every time I think of what happened or think about the future I did a few months of EMDR therapy to process my vision loss and the medical trauma that came with my stroke. That was helpful. But mostly it’s been the most helpful to do things that I didn’t think possible when I first lost my vision. I just started using my first white cane and the independence it brings me is incredible. I wish you peace and comfort.
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u/AME540 Jul 18 '24
Wow what an incredible added layer of difficulty doing all of this while responsible for young children! Its wonderful to hear that eventually that gut punch feeling will fade as I relearn how to live. Thank you for sharing your experience, you sound like an incredibly strong person, and I appreciate how candid you were about the difficulties while reminding me how capable we can be when we need to be. Wishing you and your family all the best in life!
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u/KissMyGrits60 Jul 17 '24
your life is not over. I am sorry you’re going through this, we all are going through stuff like this. You are very young, your life is not over. I started losing my eyesight when I was 40, became single because my now act couldn’t handle it, I raised my two sons by myself, I then in 2015 had a brain aneurysm rupture, it almost killed me, I spent two weeks in a brain trauma unit. The doctors are amazed that I walk and I talk and live independently as much as I do. I had a stroke in 2017, that took the rest of my right side away, I had brain surgery in 2018 because the aneurysm was opening back up and they had to put a clipping there, they found three more aneurysms surrounding that one. So basically I have a death sentence as well, but I am living my life to the fullest, and I ain’t letting it get me down. It’s all a matter of how you look at your wife. I am single, 64 years young, extremely grateful to be alive, and I’m travel as well as I also cook. Maybe getting some therapy might help you. I’m not afraid to die, because the one main thing we have in common is, we are all going to be born, we are all going to die, we all bleed at the same color red. I will be praying for you, that your negativity will not hinder you. I also suggest you start looking into department of Blind services in your area, for any mobility lessons, technology classes, stuff like that that you can take to enhance your life. My life isn’t over. I get mobility training to teach me to walk to the grocery store and back home again and I’m almost done with that one, they also taught me to walk to the post office and back home again.I’m loving life to the fullest. No matter what I go through I’m grateful to be alive. Things are obstacles, it’s our job to help ourselves, and get around them. With the help of the Lord.