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Blind and Visually Impaired Community

Full History - 2022 - 03 - 10 - ID#tb2iqr
4
Friend Going Through Optic Nerve Atrophy (self.Blind)
submitted by jkunlessurdown
So I met a friend a couple of months ago that I recently found out had Optic Nerve Atrophy, and was in the process of going blind. I had no idea; she's still in the relatively early stages of it. She gets around ok unless it's dark and she can't drive. This is actually the only reason we ever talked about it. I made the assumption that she had a suspended license due to DWI (we met in AA, so that was a pretty fair assumption. Lots of people need rides to and from meetings for that reason and she certainly isn't the only one I give rides to).

Anyway, she corrected my assumption and told me that she was losing her vision and would eventually be completely blind. And I'm just wondering how to best support her. I often deflect uncomfortable situations with humor and now we have inside jokes about learning echo location. But obviously, laughing about it is a coping mechanism for me. And she says it is for her too, but I also just wanna hear from someone who's been through this or is going through this. I just wanna be as supportive as possible and respond in a way that centers her feelings rather than my own. I have asked her directly of course. But I've also noticed that she has a tendency to minimize her own feelings for the sake of not making anyone else uncomfortable. I wanna know some basic Do's and Don'ts, obviously with the understanding that everyone is different.
KillerLag 4 points 1y ago
The best way is to ask what support she wants and not make assumptions. People process their vision loss differently, and some people don't want to accept help (and may actually be hostile to accepting help). Others may be able to articulate what help they need, and others may ask for way too much help (asking someone to get coffee for them when they have the capability to).

If this condition is relatively new, she might still be getting used to it. You mentioned AA, so I thought I should mention alcoholism can optic nerve damage, although stopping alcohol *can* reverse it.

Encourage her to get rehabilitation training if possible to learn new skills, to adapt to her vision loss. Depending on how well she's coping, she may delay that for a bit.

Some people actually do learn echolocation, but your mileage may vary. In 12 years of working in vision rehab, I have only ever met one person who was able to use echolocation well, and he still used a white cane.

https://visioneers.org/daniel-kish/

Here is a link to Daniel Kish's website.
Tarnagona 3 points 1y ago
Biggest one: ask; don’t assume. Ask her, and let her reel you what help and support she wants. Know that will change as her vision worsens, but also as she learns new skills (eg, she may have wanted sighted guide previously, but now has good white cane skills and prefers not to be guided anymore, or only in unfamiliar places).

Second (and sounds like you’re doing this already): treat her as a whole person who happens to have sight loss, not as sight loss who happens to be a person. We’re just people, at the end of the day, who have hobbies, friends, and favourite movies, just like everyone else.
OldManOnFire 2 points 1y ago
I don't have any advice to share. I just want to say you sound like a good friend.
TechnicalPragmatist 1 points 1y ago
Getting to know her and understanding what she wants and need and asking her and her individual preferences is best. Everyone has their own way.
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