How can I *move on* like everyone else has for their specific medical situation?

[calebzz1]

Hello all, I wanted to propose a question for people who have been through similar circumstances.

As an update to my overall situation, I have found out that there is no singular cure for my visual impairment according to the second neuro-ophthalmologist I have seen.

He was able to help greatly with the disability route but now I am running out of options to improve my overall function and honestly I feel cursed as no matter what I do or say my condition never improves.

Here's my most recent set of diagnoses for context.

https://i.postimg.cc/h461dkyP/Disability-letter-edited-from-second-neuro-ophthalmologist.png

Also, this is what the second neuro-ophthalmologist wrote for disability.

https://i.postimg.cc/h461dkyP/Disability-letter-edited-from-second-neuro-ophthalmologist.png

I always think back to what my dad stated a long time ago through a text message, explaining how disabled people can still go out and live healthy, productive lives.

I do not mean to sound insensitive but I think of my cousin who has a rare form of brain cancer but with all her medication taken she can still go out to restaurants, bars and enjoy concerts.

I see it all the time on Facebook with my mom's side of the family doing so.

A lot of the people I knew who had refractive surgery moved on and can enjoy their lives to the fullest.

I see it all the time on social media.

I wonder most of the day why my situation is more debilitating and I struggle so much while others can be more relaxed, doing what they want to do.

I plan to see a neuropsychiatrist on May 4th since my first neuro-ophthalmologist stated that I could visit one as my condition may have functional or psychogenic roots which makes sense.

I'm not going there to talk but hopefully experiment with neurological medication to see if that reduces my symptoms in any capacity.

I definitely have some sort of trauma as I frequently age regress with my mom since my adult mind quickly breaks down as I am locked out of so much and feel barely functional most days.

I realized that I am the type to bury emotions and would seem unreadable to most people but I don't mean to be.

I am becoming too pragmatic and practical, quickly losing interest in conversations that do not directly help my situation which is not a good sign but understandable given my circumstances.

I help people when I can but I also have lost empathy a lot since I realize that I have been stuck with the same problem for a while and no one really takes initiative to do something about it.

I realized that I am a lot more adaptable to bad situations which is great at least.

People want so much while I can barely see and do what I want to do which is frustating sometimes.

I have an amazing friend group who checks up from time to time but they wanted to do a big hangout this past Saturday but I knew I was barely functional that day and declined.

One of my friends proposed a job and I had to awkwardly decline.

The same happened when my aunt and uncle unexpectedly called, had to avoid being too raw but told them how severe my condition has gotten.

The opportunity will sitll be open if I get better though at least.

I simply can't do what they want me to do and I would have been putting on a show anyways as they haven't seen the cold, pragmatic side of myself that comes out the longer everything goes on.

They don't understand how visual impairment low-key messes everything up and that I haven't been my true self in a very long time.

I will also be seeing a dry eye specialist on May 11th as well.

I'm trying to get into contact with an orthopist but it has been difficult to reach her.

Other than that, I think I will be dealing with this for a while.

I think the reason why I cannot move on is because of how debilitating my condition really is.

If nothing changes, this is what I have to accept as a young man.

1. I'll never be able to read books as I used to do without struggling through the blur.

2. I am condemned to a low vision haze all day every two to three seconds.

3. I cannot play video games ever again.

4. I will not be able to watch television or movies.

5. I am stuck with horizontal, intermittent double vision with both eyes that gets severe to the point of seeing two copies of my arm, head and legs with ease.

6. I will never be able to continue to learn how to drive.

7. I cannot work ever again.

This goes away with occlusion or closing an eye but is still debilitating daily.

A lot of my life right now is living moment to moment, trying not to fall and deciding what object to grab.

It's a very humbling condition, to say the least as you are locked out of so much.

Honestly, I feel like I relate more to people who have low intelligence and are autistic because it is like grappling with a world that is not catered for your situation.

You have to work through so many barriers while others are relaxed and can do whatever they want.

I do not mean to sound out of touch with that observation, it's simply how I feel.

I catch myself saying "Let me think, let me think..." when at home and in public because my mind is constantly racing on how to improve my sight which I have to tell the neuropsychiatrist.

My body "jolts" at random times like I'm ready for action.

I was taking the trash out with my white cane the other day and saw a short, round and dark person at the end of the hallway.

I almost froze and immediately jolted.

I feel like I'm a "notch below" as I call it where I can't truly relax.

I am blessed to have no pain or headaches but I want to go back to how everything used to be.

I have to operate on pure faith most days because a lot if it still does not make sense symptom wise.

My aunt in the past was stating that I should let it go but how could I when this much is on the line?

I wish I could live alone because people honestly do not get it and dealing with visual impairment is exhausting enough.

My mom is one of the most nonchalant, carefree people while I'm hyper-focused on solving my problem since it is very debilitating.

Our personalities don't really mix unfortunately but we never get into arguments thankfully, we just have different goals in life.

She is excited about her new glasses and complaining about her old prescription meanwhile I haven't been able to engage in my old hobbies since May 2024 roughly, see what I mean?

Also, my mom talks about going to the beach for my birthday and how everything is booked meanwhile I'm worrying if I will be 100% functional for that.

The good news is that I'm on the hearing stage for SSDI and SSI, will most likely be getting the latter as I don't have enough work credits for the former.

Even if I get disability benefits though, what is next?

I still won't be able to do what I want in a given day and still have to struggle moment to moment.

I feel free though, in a sense that I'm not a people pleaser anymore and honestly I let them do whatever they want.

I'm content with not having "main character syndrome" and hanging back while everyone else has fun.

I simply don't care anymore.

It's wild how people drink, do drugs and engage in debauchery but can see better than I can.

That's another part which slowly eats away at you over time, I still find it bizarre how I have engaged with none of that but still suffer so much at the young age of 25.

I'll be raw and state that it's not hard to develop bitterness in my heart the longer I go on with this.

I've tried enough to communicate what I'm going through and if my friends and family are upset that I'm on disability benefits that is on them, it sucks having the mentality to work hard and do so much but physically being barred every single time.

Anyways, that's my update for now.

I try to focus on my new hobbies such as sweepstakes, entering giveaways, listening to music and dancing but deeply miss my old ones.

I will continue to try my best despite everything that I have to go through.

Thanks for reading and have a blessed day!