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Blind and Visually Impaired Community

Full History - 2017 - 11 - 08 - ID#7bpdby
7
How can I best support my fiance who is rapidly losing sight? (self.Blind)
submitted by porcelainpudding
I'm sorry if this is the wrong sub to post this in, but I desperately need advice from someone on how I can best help my fiance.

My fiance has been gradually losing vision since he was young because of FEVR. A few months ago, we also learned that he has a tumor behind his retina that is also hindering his vision.

Today he went to a different doctor to see if there is anything that can be done. The tumor did not respond to photodynamic therapy after two hours. He also learned that he has catastrophic bleeding in his eye. He has been taking evastin, but also learned today that continuing evastin will cause the tumor to shrink and completely detach his retina.

Both doctors have stated that the tumor is inoperable, and even if it was, that the disease will continue its course. The doctor today stated that he has two weeks at most left until he loses vision completely.

My fiance is crushed and feels defeated. He has every right to feel that way. But he also feels that he would not be able to continue his life without his sight because everything he loves involves sight (i.e., woodworking, mathematics, law) and he will not be able to learn Braille with enough time to ease back into work right away.

I have told him many times that his vision does not define him and what he can do. I've assured him that whether or not he can see does not impact the love I have for him. I've also told him that he can still do everything he loves regardless of sight and that if he has difficulty, I will be there to make sure he can learn to do things in a different way.

Nothing makes him feel better. I don't know what I can do to make him feel better or help him in any way to get through this incredibly difficult time. It just hurts so much to see someone I love go through this and not be able to do anything.

Can anyone please help me? Are there things I can tell him and things I can do for him that will make things easier for him in these difficult times? What can I do to make him realize that he can make it? Are there any resources available to help him learn to continue to do complex mathematical proofs with his loss of sight?

Any advice at all is greatly appreciated. Thank you so much.
Amonwilde 5 points 5y ago
If your fiancee had said racecar driving, playing baseball, and bird watching, I would have said that he should investigate new interests. But law, math, and woodworking are all entirely possible to pursue without vision. Math may require learning braille, though law probably will not. My brother, who is low vision, just passed the bar and is working as a lawyer, and law is one of the most common careers pursued by the blind. I've also heard of woodworking as something that other blind people enjoy, though my knowledge of the subject is pretty limited.

Sounds like you're already supporting your partner in an effective way. What you're saying is true...there is life after loss of vision and he will be able to do the things he did before. However, your partner may need time to grieve and it may not be until after the worst happens that he can start turning things around. As you seem to understand, his attitude will be crucial. Blind people often succeed and live well, but depression and inaction make that proposition a lot more difficult. Eventually he will have to rise to the occasion to reclaim his life but it may take him time.

I'd have him talk to his current employer and ask for six months rehabilitation leave. That's probably the minimum amount of time he would need to adjust, and it's probably a bit optimistic, but it may work out. If he can, he should start learning screen readers (Voiceover on iOS and NVDA on Windows) as soon as possible as that's one of the main tools used every day. I recommend those platforms because they're the most robust, so even if he uses Android now I'd recommend he buy an iPhone.

Once your partner loses his vision, he should get a mobility instructor and learn to use a white cane. He should also start learning braille since he has an interest in math. In the long term, you might consider lifestyle changes such as moving to a walkable city.

I'm not going to lie--this is going to be tough. But there is life, and good life, after this kind of event if he chooses to seek it. He's lucky to have you, and you might be the one thing that makes the difference between his giving up and his going for it. I hope he chooses the latter when he is able to, and I wish you both the best of luck.
B-dub31 3 points 5y ago
I am sorry to hear about your fiancé's situation. I still have some sight left but lost most of it after an acute illness back in April. He will definitely need a great deal of emotional support and I would even recommend some psychological counseling if necessary. It is absolutely an extreme loss and he will go through a grieving process. You may also need support as you help him with this transition because it will be emotional,y draining for you as well. My wife said it killed her to watch me struggle doing things I've done my whole life, but I had to so I could successfully adapt.

First of all, I would suggest getting all of the services he is qualified to receive. If you are in the US, he should qualify for FMLA from his job. This is three months unpaid leave, but it will hold his job if it is a position he can return to afterwards. Many employers will give more than that for life altering events. My next call would be to your state's Council for the Blind. They can likely provide many services such as Orientation and Mobility and point him in the right direction for vocational services to help him remain employed. Assuming you are in the US, he should automatically qualify for Social Security disability benefits. I would file an application for benefits to help him get by financially until he gets the training and services he needs to return to work. In the US, there is also an increased Federal tax deduction for legally blind individuals.

As for hobbies and interests, he may find that he will be able to continue them with some accommodation. With the accessible software and devices of today, he should definitely be able to continue studying or practicing law. I also concur that Apple is among the most accessible devices for visually impaired individuals. I know that there are vision impaired woodworkers out there. My father-in-law and brother-in law have been helping me work on my house. I’ve did ok despite my impairment, but don’t ask me to read the small,marks on the tape measure or wrenches. .The way he accomplishes certain tasks may change, but once he adapts, he will surprise himself with what he can do. Best of luck to you both. I hope that someday you will look back at this difficult stretch as a time that brought you closer together. Hanging together during the rough times is one of the fundamental elements of a successful marriage.

-shacklebolt- 3 points 5y ago
Initially, he does need the time and space to grieve and feel sad, even if he should also be exposed to a positive attitude about the future and what he'll be able to do as a blind person. That's totally normal when facing such a drastic, life-altering shift in your self from being non-disabled to being totally blind. That’s not to say that he should be allowed to mope about indefinitely or sink into depression unacknowledged! Therapy has helped a lot of people in this subreddit, especially with a therapist who is experienced working with disabled people (some are affiliated with blindness training centers, for example.) You might consider your own feelings too, as having a partner with a new disability is a transition for you and you might need more support for a time.

If you are in the US, I highly recommend that you and he look into applying ASAP for training at one of the NFB-affiliated training centers for blind people, especially the Colorado Center for the Blind, or Blind, Inc. or the Louisiana Center for the Blind. While local training is typically available (and your state may have a residential program) the quality varies widely, and the speed of non-residential training may be unsuitable for him if he wants to get back to his life and work as quickly as is feasible. Your state’s vocational rehabilitation (or department of rehab) is the first place to start to get funding and referrals for a lot of services.

Since he is rapidly losing sight, one of the first steps I would recommend taking (if he has not already) is enabling Voiceover or Talkback on his smartphone (and I second /u/Amonwilde/'s recommendation to consider switching to an iphone if he uses android,) and installing NVDA on a windows PC or using Voiceover on a Mac. Being able to use your computer and smartphone like usual is so important to remaining connected, being able to access information, etc. There are a lot of great free tutorials available online to get started.

If you or he have specific questions, there are a lot of us here in this subreddit who would be happy to answer them. You are both welcome here!
[deleted] 1 points 5y ago
[deleted]
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