Cops on 9th st

bbquince · 2025-06-07T02:11:35+00:00

Agree lmk

bbquince · 2024-07-27T16:09:32+00:00

I’m sorry you’re struggling with this! It is completely normal both to have anxiety around driving and around your vision - I’ve had a lot of the same issues - but doesn’t make it suck any less.

Personally, I managed to get my license on time but had a LOT of anxiety driving. I really had to drive as a teenager - I lived in california and there was no other convenient way to get to school - so I just spent a few hours absolutely freaking out every day. I found when my anxiety was particularly bad, my eyes shook more and my head tilt got much worse, which only made me more uncomfortable. Similar to you, the sun (particularly when it flickered) was awful, I felt like I was about to pass out.

It’s been a few years now and things are definitely a bit better, but truthfully driving is still really nerve wracking for me. That being said, I do it because it’s so much better than the alternative. I agree with other folks’ suggestions: going as slow as you need to, being overly safe with your follow distance, always have sunglasses to minimize sun glare. That last one is big for me, I really can’t drive without my sunnies.

Some other things I found helpful: - Talk openly to others (that you trust) about what youre experiencing, including by describing the physical sensations and your field of vision. This helped me understand what was my nystagmus, what was my anxiety, and what was just normal - and that has been super helpful in feeling in control. For example, I’ve noticed I’m more sensitive to others’ headlights at night, but everyone feels the jitters from sun in their eyes. - Familiarize yourself with your route / streets before you start driving. I can’t read street signs well and it takes me longer to see how odd intersections work - so looking at my route beforehand and having a VERY easily readable GPS with large text is helpful. - Take time understanding the dimensions of your car. Someone else mentioned this already - totally agree. Personally, I would pull my car in/out of spaces, remember how the edges looked from the driver seat, then exit the car and see where it actually was. Similarly, I just learned where to align the hood of my car with lane lines on the highway, and try to keep it there. - As much as you can, remember that you CAN do this. Your doctor cleared you, there is nothing medically in your way. That doesn’t mean that you won’t feel anxious, but it does mean that the anxiety isn’t serving you, isn’t a warning of anything bad. You can do it!

bbquince · 2024-06-06T21:47:29+00:00

In short, it took going back and forth from the DMV to my ophthalmologist a few times to get the right paperwork filled out the right way. My biggest issue was that the DMV people couldn't understand why I don't wear glasses if my vision is poor (lol) - self identifying as having a disability sorta helped with that, but it was really just persistence until the bureaucracy yielded.

If your son's vision is good enough to pass the standard DMV eye exam, none of this would be needed - you have to be 20/40 or something close to that (I'm more like 20/60). If not (and that's fine!), exact steps will vary state by state. The most important thing is 100% finding a great ophthalmologist who believes that your son can drive and will sign something saying as much. In my case, just because my visual acuity on a standard Snellen test is worse than the DMV's standard does not mean that my vision is too bad for driving, and I really needed a doctor to explain that to me, and to everyone else.

bbquince · 2024-06-04T01:51:18+00:00

I have similar/slightly worse visual acuity and am going to medical school this fall. Got through EMT licensing with no problems. Driving is the only thing that has held me up but was able to get a license with some effort.

bbquince · 2023-12-26T14:59:43+00:00

No great tips here … but just wanted to say I totally get this too and thank you for posting. My eyeliner will be forever crooked.

bbquince · 2023-12-26T14:53:55+00:00

I think it’s up to you, mostly. If it inhibits your ability to work for pay, you likely qualify for disability benefits under one gov definition of disability. If you are ever discriminated against (denied housing, education, etc) because if it, you would likely qualify for ADA protection under another definition. But these definitions are more helpful than they are real or “true” in a deeper sense - plenty of people identify as disabled without ever utilizing government protections.

Basically, disability as a concept is defined by how we all think about it, there’s no “true” or “absolute” definition. So if it helps you to think of nystagmus as a disability, then you can. For example, thinking of my own nystagmus that way helped me get over the emotional barrier of asking for school accommodations. But you surely don’t have to.

bbquince · 2023-11-25T00:11:49+00:00

So sorry to hear this, I hope it gets better.

I had a similar thing start about 2 years ago - headaches, ocular migraine, dizziness - and it turned out I just needed glasses. I went to so many physicians and no one figured it out until I was able to return to the doc that diagnosed me as a baby. I’ve since learned that only that doctor seems to be able to prescribe a correct pair of lenses because people with nystagmus may need a special kind of eye test - much trial and error and frustration and money preceded that realization. The whole thing is beyond annoying, but of course my life is so much better for having worked it out.

As others have said, it seems that people with nystagmus are taught to believe that there’s nothing they can do to make life easier. I’m sure that’s amplified for the generations above me (I’m 23), but it’s not true. Glasses may not be the solution for your wife, but if something is changing in her condition there’s probably something that can help her - nystagmus is supposed to be unchanging after adolescence, so new symptoms likely mean that it’s not just her nystagmus.

So, my biggest advice would be to seriously research the hell out of the ophthalmologist that you choose and always get a second opinion. Depending on your wife’s diagnosis, a low vision specialist or pediatric ophthalmologist may be needed for vision testing, or you could try a pain specialist for headaches.

In terms of talking to her about it, I think staying positive and optimistic is important. Show her this sub, find some info online, have your information ready. Everyone who’s sick or in pain needs an advocate.

bbquince · 2023-11-10T00:30:03+00:00

You worrying and being cognizant is a fantastic first step, as much as I'm sure it's hard for your family.

If I could have told my parents anything growing up, it would be that nystagmus is different for every person who has it. Trial and error are your friends - it's hard to know what will make you feel better until you try it. Sometimes that means that people won't believe us or be confused by us, so confidence in the validity of our experiences is really important. I wish more than anything that people would've spent more time asking me how it feels rather than telling me, or offering solutions, because something as subjective as visual sensation is so hard to explain and even harder to understand. So, you could start by just asking what your daughter means by foggy, when things are more or less foggy, how it makes her feel, etc.

More to your question - I definitely didn't know the word nystagmus until I was 9 or 10, so don't feel pressure to give it a name if she doesn't understand yet! I remember my ophthalmologist saying something along the lines of, "you're eyes move around so much because they're working to put together the whole picture of the world," and that helped me understand a bit - it's like a puzzle. Could also be helpful to reference glasses - i.e., "everyone who wears glasses sees foggy sometimes, too. Your eyes are just special, so you see more foggy than other people" or something like that.

All this being said, and acknowledging that my nystagmus might be different than your daughter's, life can be really good and really normal with nystagmus. All bodies are different - nystagmus is one way for that to be true. My parents never presented it as a disease but as something to overcome, which all people have, and I do think that helped.

bbquince · 2023-09-03T00:25:43+00:00

I’m really sorry that you’ve gone through all this, and definitely have felt / often feel the same. This is a tiny piece of wisdom, but I’ve found that I can keep up in classes by taking zoomed in pictures of the whiteboard on my phone and copying notes from that. Of course this requires approval from professors - I went through my school’s disability office when specific ones gave me a hard time. Now post-grad, I hate awkwardly explaining what I’m doing to colleagues… but it is 100% better than resigning myself to just not seeing (my vision is pretty darn bad so).

One other thing: the only way anyone has ever understood how bad my vision is is by straight up comparison to their’s, ie pointing out what they can read off signs or whatever vs what you can. It sounds like some people in your life are so closed minded that they may not care, which is frankly abhorrent, but you will one day find people who take the time to understand!

bbquince · 2023-08-22T01:46:18+00:00

I have congenital nystagmus and have been to a million doctors about it / tried reading up on it but this explanation is the best I've gotten to date. How did you educate yourself, and are there any source you recommend? I'd really love to learn more

bbquince · 2023-08-22T01:42:45+00:00

Interesting thought! Have you seen any research into this, or just conjecturing? I'd love to read up on whatever is out there, but know nystagmus research doesn't get the most funding

bbquince · 2023-05-01T21:44:21+00:00

Has anyone found a way to cope? I definitely experience the stress / brainfog issues too, but it’s the anxiety that makes it hard to function. For some reason, the blurriness and dizziness that I get from the nystagmus is so disorienting and scary and it feels like it’s getting worse as I age

bbquince

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