Blindness

I want to post something that’s light compared to the last one, and just to perhaps have some fun on this kinda internal joke I have. I say “I won the gene lottery” for the worst genes!
It’s not very sad to live with it for me, perhaps because I grew up in an environment so bad I had to learn to adapt fast, which makes me going blind not suffer so much though after 5 years actively dealing with constant spurts of vision loss, I finally feel some grief.
But really if I would list… disabilities? Well, ASD and blindness are together. Very likely to have won the ADHD gene too but I didn’t get to test yet because of money and because the overall test checks for ASD, ADHD and “being Gifted” and I’m already proven to have ASD and a “Gifted Brain” so I don’t want to pay a lot of money right now just to check if ADHD is here too. Now eyes? Congenital cataracts with retinal dystrophy followed by partial ophthalmoplegia, partial lagophthalmos, nocturnal lagophthalmos, light strabism and an amblyopic eye that never worked until some weeks ago and activated because my dominant eye got to the useless bar. Also was lucky to win the myopia and astigmatism genes but those are common in society. Then there’s the very specific genes from each of my parents… heart disease and hypertension weren’t on my bingo card until I actually got to a point where I apparently earned it from my dad. Then a very aggressive gastritis from my mum, and also coming from her… loose ligaments and double joint.
Aside from my effed mental health that is more mine than anyone else’s, I basically won the gene pool. I try laughing about it because if I’d cry for all of it I’d be even more miserable, but what most of that brings me isn’t the grief really, it’s a free ticket for being constantly annoyed and tired, always in fatigue and although my patience is almost endless, I do get frustrated and annoyed by having to go doctor after doctor trying to solve my issues, adjust medications, and overall, trying to find an ophthalmologist who actually will effing listen to me on testing for Retinitis Pigmentosa Sine Pigmento because I have all the symptoms, but nothing is visible on my retina, and that’s why this kind of RP I mentioned, is called “Sine Pigmento” (If you didn’t understand the term, it’s Latin for “without pigment”)

Hi, my name is CuteKoala8175.

#MightyTogether #Migraine #RheumatoidArthritis #Blindness #Glaucoma #RareDisease #MitochondrialDisease #Gastroparesis #Fibromyalgia #MultipleSclerosis

IIH and exotropia:
Idiopathic Intracranial Hypertension (IIH) causes elevated brain pressure that can trigger sixth nerve (abducens) palsy, resulting in horizontal double vision or, in some cases, exotropia (outward eye turning). While inward turning (esotropia) is more common with this nerve palsy, IIH can lead to various ocular motor disturbances.

IIH and optic nerve atrophy:
Idiopathic Intracranial Hypertension (IIH) causes chronic, elevated pressure that leads to papilledema (optic disc swelling), which, if untreated, can cause permanent optic nerve atrophy and severe visual impairment or blindness in about 10% of patients. It primarily affects young, obese females, with symptoms including headaches, pulsatile tinnitus, and transient vision loss. Early detection, weight loss, and medication (e.g., acetazolamide) are crucial to prevent irreversible optic nerve damage.

IIH and optic chiasm narrowing:
Idiopathic Intracranial Hypertension (IIH) is characterized by elevated cerebrospinal fluid (CSF) pressure, with a strong, well-documented association with transverse sinus stenosis (narrowing of the brain's venous drainage channels). This narrowing is frequently found in 30% to 90% of IIH patients and is believed to contribute to, or be a consequence of, the elevated pressure. While often a secondary effect, this stenosis is thought to act as a "disease amplifier," playing a major role in the pathophysiology and potential treatment (e.g., via stenting) of the condition.

#IdiopathicIntracranialHypertension

Ok so… I don’t really want to avoid saying stuff in a place meant to be safe but I am tired to the bone.

It’s February 26th, that means the year had only 57 days so far, and it’s effing crazy! I do something, I think I can stop and breathe then no, the gods hate me and throw something new at me.
My retina is dying, I’m exhausted, I’m depressed. I just can’t take having so much medical appointments and phone calls to do, and yet I have to do them. Trying to get as much as I can through WhatsApp from the clinics I attend, but some are only phone or basically having to go in person. And I have some points to make about this ordeal.

Also, accessibility is being ignored basically, and I’m not like in the USA where they’re actively harming ADA and DEI, I’m in effing Brazil but due to a lot of international relations stuff to be done, if you don’t know Brazil is basically on the leadership of the movement for the independence of the World’s South. But then the things I and many other citizenships have to face daily are basically abandoned, and it’s even more crappy when it comes to my State, that is with a disgusting governor that is basically screwing all the progress we had from education to social morals so far. It’s just exhausting. And this year are presidential elections over here so yay, let’s have another fierce fight against extreme right facists, anyway,

I think I finally can with more agency understand my mum, because when I was a baby and she discovered I had congenital cataracts, absolutely nobody was there to support her, she was my age with a me baby, going everywhere just to get me to have surgery and be able to live a sighted life. And now I’m basically facing the same, with the exception that I have some support from, you guessed, my mum. But she can only go so far as to help financially mostly because I’m an adult, so I have to make the phone calls, look for resources, adapt my day-to-day life and basically deal with it and kind of suck it up. Because acconrding with my grandma I have no motive to cry, when I was crying out of despair because I’m getting blind and I held composure for too much time and I just broke when I was home.

Is anyone actively invested on my life? Well, only the surface stuff and expectations I’ve always had to deal with. Be the perfect student, be the perfect adult, study my ass off to be able to get a job, etc. my grandma can’t even grasp that I’m only in university because of the effing paper/degree, because it teaches me nothing actually useful, everything I have to learn I have to do it by myself, and she can’t understand it, and look, she’s not an old senile stereotyped grandma, she’s tough as a rock and stubborn as a mule. If I’m at an external course, she always asks if it’s with uni, and when I say no for the hundredth of time she asks “what about uni?” And I’m like “I don’t give an eff about uni, I only do what’s required, get a good grade and forget about it for the rest of the semester” .

Anyway again.

I’m so frustrated honestly, not only because my blindness, my difficulty with being autistic in a society that’s not empathetic. But basically society in general! I’ve been to a wonderful place in January and met wonderful people, when it was over i came back to real world, and it sucks! People have no empathy, people disguise empathy on fundraisers for public image, and I was able to see it behind the curtains. People have no interest on important stuff, people are basically choosing ignorance and that make them stupid. People have no more critical thinking. And that’s frustrating. For me the world feels like having to play dull because rarely will I find someone I can have a conversation on topics I’m more interested in, and a very ungrateful place to be in, because I invest emotionally on people just for them to not be reciprocal and it’s not a “oh my date turned me down”, it’s basically being the one reaching out to no avail, or being reached out by others only when they need my help.

I am tired.

Today was a hard day, but reflection from last Saturday. My vision dropped even more, my field of view started closing, I had a friend tell me to go to the doctor because it sounded like a retinal detachment, just for my grandparents to be completely dismissive and accusatory.
I’ve been to several doctors this week and the last contradicted what the doctor I most trust told me. She saw no issue on my retina.
Night blindness became more real, my brain isn’t being able to correct dimmer locations, and things feels just weird.
I went to a very good hospital today in hopes I could find some light, a north to go through… and that’s what scared me.
I went to a place I’ve never really been, leaving the station I had to look for the entrance, I know nothing about the layout of that hospital, I felt scared and lost. And I’m a person who usually walks assertively, cane in hand, fearless.
I was worried about my defense mechanism of speaking in a smiling and happy manner, but I was broken, I couldn’t express myself enough, I couldn’t hold back tears.
You know when someone says “if I went blind I’d end myself”? I definitely don’t have that feeling, blindness doesn’t scare me, not having control does. I felt anxious. I wanted to die, and this thought of wanting to die isn’t gone. I once shared on a comment that I have passive chronic suicide ideation, and I’m damn holding on to not do anything against my life… but the idea of not knowing what’s happening and then the despair of “I’m going blind, but when? How much time do I have to prepare?”, I’m already legally blind but it’s still scary and I have things I want to secure for my life before having to deal with being completely blind.
The good news are… the doctor told me my pupil doesn’t dilate enough, so he couldn’t see my peripheral area of the retina, which means the doctor on Wednesday also didn’t see it. The doctor that told me I have a dystrophy actually had an amazing nurse that didn’t give up on using the dilating eye drops until my pupil was actually dilated, that’s why she saw.
I feel less despaired knowing at least the information I had still stands, but I still feel very depressed, not with blindness, but with a non-accessible world, an ableist world, a dismissive family, and with the fact I have to speak for myself, have my agency, when I’m so tired I just wish I could go back to when I was a child and my mum would talk for me.
I am too tired. I want to die. But I also want to hold on.

Some of my work invloves event planning, over the years I’ve noticed we could do better at offering access needs. So I’ve been setting meetings for the team to learn about accommodations and what correct language we should use. But no one wants to offer accommodations because, “they’ll ask if they really need something or help”. But that’s not what we should wait for. We should offer these accommodations so people don’t feel like they are an obstacle. We should have events that accept everyone walking/wheelchair users, hearing impaired, visually impaired, etc.

It’s tiring to fight for this but if I don’t fight who will? I feel like those of us whom need accommodations want them offered in more places and those who don’t have accommodations can’t wrap their head around it.
#Accommodations #VisuallyImpaired #HearingImpaired #Blindness #Deafness #AutismSpectrumDisorder #MentalHealth #Anxiety

It’s such a weird concept for me when it comes to my condition.
I grew up low vision due congenital cataracts, even having made surgery at 3yo. My first experience in the visually impaired world wasn’t known for me. I never realised I saw so little compared to others, I never had something to take as reference so for me: it was just normal. I was just clumsy. It’s normal for people with myopia to have to wait the bus to be like 2 metres from you to signalise for it to stop. That’s how I grew up until an eye doctor tell me: “you must not lie and guess the letters. If you lie and guess them I won’t be able to properly diagnose, so if you can’t see them, just tell me.”
And that was my first time hearing the term “low vision”, at 18yo, the same year my retinal dystrophy decided to manifest, basically about 6 months before I became legally blind.

What makes it even weirder for me is taking years to know I have a retinal dystrophy, and to now be self aware to know the symptoms it displays. Not a self diagnostic but also not an opinion of a doctor but a guess I have.

My condition seems to be Retinitis Pigmentosa Sine Pigmento. A form of RP that’s really hard to catch because it doesn’t show itself as most forms of RP do.

And it’s a hard thing to grab because I didn’t know I was night blind until recently, I thought I couldn’t see at night because I have photophobia and the street lights and cars messed with my vision. I had to discover my night blindness in a very out of the box way. I knew I had tunnel vision but that’s one of the aspects that made realising the night blindness even harder.

For those with congenital aumarosis (100% blind by birth with no other condition in play), what they see, is absolutely nothing, and humans usually can’t grasp the idea of absolutely nothing. There are some tests you can do to have a partial idea of what it is, but it’s not black, it’s absolutely nothing. And for some reason, that’s a concept I understand. So when it comes to my tunnel vision there’s no blackness outside of my visual field, and I don’t have enough visual memory to even know if this lack of field of view was once lower, I have no idea what’s outside of my field of view, and it’s not blackness, it’s just nothing at all, and I even had to try to explain to blind people about nothingness because they acquired blindness and they see full black or full white, or just gray.

So I never even noticed the night blindness, because it portrays as street lights and vehicles headlights, and just a deep darkness that makes everything basically black, and I just didn’t understand that besides the lights, the blackness meant I couldn’t see. Until the day I went into a darker place with sunglasses and I couldn’t see, then it came, late again, but came, what night blindness looks like.

So basically: tunnel vision, check; night blindness, check; getting darker becomes something similar to static on a tv, check. I will go for a diagnosis to know if it’s RP or if it’s another retinal dystrophy that has similar symptoms, I plan on going after it this year, I just need to have some time to breathe since I haven’t stopped since September and I’m basically burned out.

I’m in my second week of attending daily 30-minute meditation classes, and I already feel like I’ve learned so much. One major theme my class has been focusing on is “surrender.” To surrender is to let go of the ego and allow yourself to be fully present with the moment as it is.

I keep returning to the question: What does it mean for me to surrender?

When I experience a neurocardiogenic syncope episode, surrendering means accepting and acknowledging what’s happening, without letting it define me.

When I go to a routine eye appointment for pressure checks, surrendering means trusting that I’m doing my part: taking my medication, using my eye drops, and allowing my medical providers to make the best decisions for my care.
I could go on and on.

Surrendering is hard. Our ego loves to get in the way. But for the first time, I truly feel like I’m re-wiring my brain.
#MentalHealth #Anxiety #Glaucoma #Uveitis #Blindness #NeurocardiogenicSyncope #HypothyroidismUnderactiveThyroidDisease

I’m really frustrated here right now, I’m going home, and home is very far, as I was in a formation program for software devs.
I couldn’t finish the last exercise of a list, only the first 6 ones were obligatory but I wanted to do all 10 of them, and I got stuck at 10.
It seems like a very little thing to worry about, but it’s not worry, I just have a very rigid brain that tells me I need to finish and do perfect else I’m not good enough.
And I’m already in a position there that I know, even if people say it’s ok, I don’t doubt a single moment that there will be a lot of internalised ableism and a lot of annoyed souls because I’m the first blind person in the program that actually got into it. But then the accessibility is close to none, we’re trying to get by, I’m using the very little bit of sight I have left to try and read with a lot of zoom when I can’t use Orca to read stuff for me. Yes, Orca, Lunix’s discontinued screen reader that gets tweaked from time to time but honestly it’s very much abandoned.
So everyday is me trying to not only do things in a way my brain will see my worth, in the way my brain will accept, because cognitive rigidity is a nightmare and a source of self hate. And then there’s this, being everyday surrounded by sighted people, or some lv1 autistic here and there (at least I think someone might also be on the spectrum). But no one who basically would stop being able to use the computer because is stimming so much that can’t avoid moving their hands and it making the mouse move being impossible to see anything even if you’re sighted. And then go to the restroom because needs to cry and move the whole body until stabilise to be able to do anything.
I wish I could say “try being on my shoes for a single day and feel what I feel” but truth is, I’m very much used to blindness and autism, it’s my everyday life. If a sighted person experiences blindness for a single day only, they would pretty much be even more ableist, because not so much of news but they will not be able to do anything almost. So yeah, to know what means to walk on my shoes, means 23 years and a half dealing with undiagnosed autism, lots of forms of abuse, and progressive vision loss happening abruptly after living a whole life with low vision and only discovering it at 18yo.
Quick editing just to fix an English breaking over there and to clarify that I am a diagnosed autistic, but I was only fully diagnosed after 18yo, so out of these 23 years and a half, 18 would be dealing with undiagnosed autism.
Also, no hate towards lv1 people, it’s just that the difference when it comes to a meltdown or shutdown , and the amount of repetitive movements or sounds, the level difference has a very large and clear line in between.
Also something fun to say: today I confirmed that I really hate umbrellas. I avoided buying one because carrying a cane is already a hand that will be unavailable. Try a cane and an umbrella. It’s indeed a nightmare.