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I'm gradually going , with some expected pauses here in .

I haven't talked about it much, publicly anyway. Like most of anyone's life, it's nobody's business but mine. But, today I spent a few hours searching for information on what to expect during this process, and didn't find much. So, I thought I'd write my experience up as it happens, for the next person who needs it.

(pinned thread)

For comparison purposes, I was diagnosed with in my early thirties, over a decade ago. This was early in the progression of the disease, and I have followed my treatment plan better than average according to my doctors.

If you have just received a diagnosis of and are freaking out, know that these days, most people with glaucoma do not go , especially if they caught it early and you follow your treatment plan consistently. You can find information on the relevant statistics, the available treatments, et cetera, by searching online, reading books by glaucoma specialists, and asking your doctors.

Regardless of your diagnosis and prognosis, know that , , and going , are challenging sometimes, but also OK. This is a normal life transition that some people go through. I can do it. You can do it. Hang in there.

And, if you're reading this because someone you know is losing their sight: Your friend is still the same person. They didn't suddenly turn into your project or become pitiful, and they don't suddenly exist to inspire you or anyone else.

Here is a 2014 study about how patients describe their . Unfortunately, this was the only copy I could find, and the actual data seems to be in screenshots of tables, with the rightmost column or two truncated.

ncbi.nlm.nih.gov/pmc/articles/

Even with the same diagnosis, you may experience different from others.

The study in my previous toot says most people with want more light, but I became more and more , to the point of wearing sunglasses indoors, turning the brightness of all my screens down to the minimum possible value (which was still far too bright on iOS devices), and getting additional darker coatings on my glasses. Post about 6 months ago, this trend may be reversing.

Subjective can be very different from what shows up in a doctor's office.

For example, my brain seamlessly fills in what it thinks is in my missing vision. I sold my van and stopped driving during the day after I realized that my left side mirror showed me what was to my left rear *the last time I looked at the mirror with my central vision*. Fortunately other drivers avoided the accidents I almost caused during the few weeks it took me to figure this out.

I was still willing to drive at night for about a decade after I stopped during the day, because car headlights effectively extend the length of the vehicle. Some light always reached my working vision, and my brain filled in a car instead of empty roadway.

More recently, I've had enough trouble seeing as a pedestrian that I let my drivers' license lapse entirely.

A particularly frustrating experience I suspect happens to many people with degenerative is when a doctor says your vision is 20/20, or is otherwise pleased with your medical condition, but in practice, you cannot see well enough to accomplish your daily activities, at least the way you are used to doing them.

Keeping notes on how specific vision defects affect specific activities, and insisting the doctor comment on the practical issues you encounter, may improve your treatment.

But, in the end, when you are going through , doctors are not going to help you adapt to the vision problems they cannot correct.

Sometimes they will even push medical solutions that can have negative practical impact for you. They may not mention or even realize this because they are so focused on the medical outcomes that they had just as much trouble hearing past patients' practical feedback as they do hearing yours.

When you read my experience, realize that I have a lot of healthcare , and this is not my first (or second) condition. Yet I had to level up my skills to get satisfactory healthcare from my providers.

I have good insurance. I am white, middle-aged, and historically middle class. I can (and at eye doctors' offices, usually choose to) pass as a "respectable", able-bodied, "fit", cis het white woman.

If you don't have these privileges, I see you.

Everything is really blurry today, particularly depth. It is exhausting and nearly vertigo-inducing when I move my head. My assistant can't go in to work today, so there's no point in me doing so; I would not be able to do much, and would get a headache that might prevent me from working tomorrow, too. My plan is to shut my eyes and learn to use a screen reader better.

Stuff I have learned as a sighted-for-now person trying to use a screen reader (any screen reader) to do simple daily tasks:

- It's not just that it talks to you; on mobile at least, it changes what your input gestures mean.
- I usually prefer reference documents to tutorials, except now I really do want a tutorial.
- The white US culture I grew up in put a low value on oral storytelling and recitation memory, and that plus executive dysfunction is an enormous disadvantage now.

new to screen readers, I learned 

- It's really hard to tell whether lousy results are due to operator inexperience, poor support in the OS, less good screen reader software, poor support in the app, ...? Therefore, whether to review instructions, switch platforms, ask on a forum (which?) or file a bug (on what saying what?) is extremely unclear.
- Everyone always wants to go to the useful parts immediately, but I cannot exaggerate how much screen readers magnify this desire.

The upshot is, I've temporarily given up on TalkBack on Android/GrapheneOS.

Windows is an untenable solution for me long-term, but I'm going to try NVDA (previously suggested by @Mayana and probably others) on my partner's gaming machine to establish a baseline. Hopefully my knack for royally screwing up Windows machines by trying to do everyday user things does not follow me over the UI format change.

disability services +? 

I have been looking for some local TTS and Braille training. Today I found a nearby advocacy & assistance organization that is managed by people with disabilities, and sounds very serious about helping with what their customers ask for, rather than trying to take over & tell people what kind of help they need. I like that they explicitly decided to be a single community and not fragment themselves by type of disability.

I have hopes that we will help each other.

@asparagi I used to worry about this as my grandmother went blind from Glaucoma. But as you say, these days it can be caught and dealt with. One of the reasons I have regular eye tests.

@asparagi It's something I've learnt to be accepting about. I've seen my late father in law lose his vision to macular degeneration, and had the potential for vision loss with glaucoma that wasn't responding to treatment, so was starting to prepare myself for the inevitable.

I now have stents in the backs of my eyes so, with drops, pressures down to normal - but have remained very much aware.

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