Good luck to both of you, but gonna start right off with contact mental health services for both of you, might seem silly but you'll be glad you did. If the house is somewhere you have been for a while he should not have too much difficulty knowing the layout but the stairs are going to be a hazard that need to be taken carefully, also keeping stuff from hanging off the edges of tables and the like will helf prevent breaking things. Once he’s home keeping things as consistantly placed as is reasonable will help, don’t want to have finding the remote to turn into a scavenger hunt of stress and frustration, well not anymore than finding a remote already can be. Keeping the main lines of travel through the house as clear as is possible also is a good idea, cats are gonna be cats but should get the message after getting stepped on a couple times, shuffling walk also is helpful for not tripping on stuff, and makes kicking the cats less of a problem, saying this as the parent of an infant who loves to crawl all over.

Contact your local/state blind services as well, before getting home even if you can as they will be very important for a while with learning to get around, do things like cook, housework, learning accessibility tech and the like, if he is looking for something to do currently trying to learn the screen reader in his phone could be a thing to focus on as getting back to having those connections is very important for dealing with all this. I probably forgot plenty but I am sure others will chime in with those things and more.

Hi,

I’ve been through something similar! First thing first, don’t give up, and try and stay positive for his sake. It will help. I had a stroke and brain injury; I lost movement in the right side of my body but it has mostly returned. In my case, I’ve gone from seeing only black for a week to being able to read large print without glasses, able to play console games, and while I am using a cane, I am hopeful it won’t be forever. 9 months on and things are getting better and better every day; I see people and dogs while out on my walks, I see buildings and while low acuity, even that seems to be improving slowly.

Things that worked for me:

1. moving the torch around and following it with my eyes. I slept a lot but I think I did this for 15 mins at a time. I did this for 1 week, Then I moved onto a new activity
2. Colour filters. I had someone hold them in front of a torch, to change the colour of the light, shining it onto paper. Start small, red, blue and white; I originally couldn’t see the colour but actually felt temperature (blue was cold, red warm). Then build up gradually. I would stare at the colour on the paper and try and see the colour. This was exhausting and I could only do it for half an hour at a time. I did this for 2/3 weeks.
3. I started walking independently as soon as possible, with basic O&M training. My friend walked with me for the first two times on a route, then I would go alone but would be tracked using my smart watch. This gave me confidence and independence.
4. Bright colour large shapes on a bright contrasting background. Once I could see most colours (aside from purple), I started trying to see shapes; I used my finger to help trace the shape and make my eyes see it. I did this for a month.
5. Brightly coloured wooden letters for infants on high contrast colour background. I relearned to read through this. One letter at the time until recognition is easier - to get to this stage took 2/3 months.
6. I got voiceover set up on my iPhone within a week, and got bone conducting headphones to use alongside O&M training. This meant I could hear traffic noise as well as the directions from Google maps. I can also recommend the No jab cane!
7. I have an iPad and as soon as I had enough vision, I started playing a game called I love hue on maximum brightness; you have to sort colours. It starts easy with large bright obvious colours and as my vision improved, I moved onto harder levels with smaller, more subtle colours.
8. To help my motion, I had my friend drop a ball into my hand on my afflicted side to try and bring back my grip reflex; it worked. It needs to be weighty enough to feel instantly but not too heavy that you can’t catch. A larger stress ball might work.
9. I lost my grip and pinch strength, so the OT gave me pegs and gym- type grip exercisers. This has nearly normalised.
10. Learn to type Braille; it made using my phone so much easier.

Don’t expect the world but at the same time, remain confident and try and encourage your husband to try. Share my story if that helps; I had no vision for a week, before I started to see black and less black, but now I’m playing gran turismo. Do get in touch if you have any questions.

Hi I am sorry to hear about this. That is unfortunate. The house should be fine, he will have to learn to navigate stairs first holding on to the hand rail or something but later can do without. It I can go up and down stairs without one and even run up and down. Houses don’t need to be modified for the blind usually.


Especially if he does not improve his vision get him training. Life is not over. He can do almost anything. Even work. Blind people can live a full life.

Get him assistive technology training, independence skills training, and mobility and orientation training to use a cane and learn how to walk around his house with or without a cane. Most of us don’t use a cane indoors.

What did he do before as a profession?

Reach out to state agencies like vocational rehabilitation. They can help with school, training, equipment or some of it, and/or other resources. It depends on the state you’re in. They say they’ll help you find a job but only sometimes and sometimes it’s still not the best one, so still good to job search on your own.

Don’t give up is the important thing, if a counselor is required get one in grief or blindness related. Some do specialize in blindness.


There are blind organizations that can help. Dependent where you are located. So where is that.

In the united states there are lighthouses all over the country, and other ones state by state. In california there is the braille institute for instance and path finders but they have now moved on to multiple disabilities but still may be able to help.


In america there is the national federation for the blind and american counsel for the blind. Some people don’t like either of them such as I, and some find them useful.

The national federation of the blind and also each state should have a training center that he can attend to get the mobility skills at least started or a good bit of it, the independent living skills training, and assistive tech skills. The national federation for the blind ones will also teach them home management skills like woodshop and I think circuitry. I know woodshop for sure. Get vocational rehab to help you pay for one.

Alternatively they can come to your house otherwise, but the training centers are much more intensive. And they live a year independently. Up to a year that is six months at the minimum. Depends on how much they need to learn.


Also I think it would be great to learn braille and to then be able to read write and use it.

In canada there’s cnib and in england there is rnib. I don’t know too much about any of those, I am sorry. I am an american who lives in california.


Yes maybe as a newly blinded person it may be confusing so saying gently hey this is jennifer by the way may be helpful. Also ask him if that is necessary or if he can tell it’s you, if it would be too much of an insult.




Be supportive and listen to him, he may be upset and depressed that he can no longer see be encouraging.

Maybe for now music or an audio book or a smart speaker may be helpful. A smart speaker may not be prudent in a hospital setting though.

I have mentored someone who was in a very similar situation. She had an operation much like that and woke up with nothing, so if he has something, that'll help.

Lots of people have said lots of good stuff, but on the mental side of it I will say two things.

The first is that if this turns out to be a long term thing, there will be a lot of temptation to "give him time." The problem is in my experience that after a few weeks, just hanging around will not make things change. It will not get better automatically through some mysterious means. You have to make it get better and the only way to do that is to show you can do stuff which means learning how to do stuff. The stuff you have to learn is just techniques, it is not rocket science, you do not have to be a special sort of person. It's just work, and you and he will resent the extra work. It's worth it because it is the only way to feel better. It will never feel like the right time. You just have to start.

The second is that it might often feel like there are lots of people who are doing really well with various amounts of sight and that they're really happy with it. It's sort of a political thing to push the idea that everyone's doing really really well and is completely upbeat. Of course the reality is that I don't think anyone in their right mind really likes this situation and sometimes it is worth being upfront about that. It makes everything a thousand times more work and sometimes you end up not doing stuff because it just feels like too much messing about which will happen sometimes and that's OK. I've said this a lot but the main thing is you do not have to find a way to love it which is not possible. You have to find a way to live with not loving it which is definitely possible.

Sorry if that's a bit of a vent but I hope it helps at least a bit.

I think he should be able to recognize your voice, that's how I figure out the shadow talking to me.
The animals might be a trip hazard, they are for me, except the one that I stepped on a couple of times, she knows.
Children running around can be a hazard also.
You want to keep things in the same place. Very frustrating not finding something after you put it down.
Like a previous poster said, contact your state agency for the blind to get some orientation and mobility training and whatever else they can do in home. They teach you also.
When you go out with him, since he does not use a cane yet, let him latch on to your elbow. When you go left or right he will follow and when you stop he stops.
A psychologist for this life changing event to talk about the challenges and to just blow off some steam and relieve stress. And he shares an occasional session with you.

Where was the cavernous malformation? I had one of these removed from my right temporal lobe last summer and temporarily lost a small amount of upper left quadrant peripheral vision. Bc of the location of my Cav mal, this was considered normal due to the interaction with the Loop of Henle (I think, if I recall my neuroanatomy). I regained my vision in the area. Cav mals can be all over the place though, I have two others. Do it may not relate to your husbands.

The angioma alliance (recently changed it’s name, i don’t remember rn) has a ton of basic info on cavernous malformations.

Good luck!

Thank you all for your comments! I've read each and every one. Some updated information as it was described to me: his eyes still work (as his pupils are still responding to light) however. The part of the brain that registers what he sees into images was damaged due to a stroke. I was unclear if it was before or during surgery.

I have made a ton of notes with the suggestions that have been provided.

I am so appreciative of each and every one of you❤

Hey, my husband went through brain surgery too! He also had a non-cancerous tumor, and had to have a couple surgeries to get it removed. In our case, he has permanent and total loss of vision in one eye. The fact that your husband still sees light is incredibly promising, especially if the surgeon had to touch the optic nerve. If that is the case, it could take months to heal, but it’s definitely not hopeless. If you haven’t already, get him into an ophthalmologist.

Also, I just want to tell you that you are amazing. I’m also in your age range, and it’s so hard watching your spouse go through brain surgery and vision loss. You end up forcing yourself to be strong because you have no other choice, and it kinda sucks. I just want you to know that you’re doing better than you think. Please just make sure you take time for yourself to feel those hard emotions, ask friends and family for help even if you don’t think it’s needed, and don’t forget to treat yourself to things like favorite meals.

u/invictaluna, it's been nine days since your post. How is your husband doing? How are you doing?

Are you able to access the local services you need?