retinitis-pigmentosa

Retinitis Pigmentosa Awareness Month

      If there’s one thing I’ve wanted more than anything else in my entire life, it’s been to be normal. That may be hard to believe for most people in my life, given that I’m prone to living in a manner some might describe as dramatic and “unnecessary”. Maybe a part of me realized a long ways back that on some level I was never going to blend in, that I was never going to be quote unquote normal. Growing up, I was never normal. I was the kid with the big hearing aids, the kid with the lisp. When I wasn’t the deaf kid, I was the twin who ohmygod shared a womb with his sister “and isn’t that awesome do you guys share a psychic connection what’s she thinking right now?” (As we’ve grown up, I have developed a keen sense of her moods - right now, she wants wine and carbs). Neither of those things that made me different were inherently bad - they were just things that I didn’t have control over. I’m big on being able to control things in my life (more on that later).

        Then of course, when I had maybe just become as normal as I’ve probably ever been in high school, where my identity wasn’t wrapped around my hearing aids or my womb-mate since my teachers weren’t all aware of either, I tuned into my emerging sexuality. So then I became the gay kid. I couldn’t control that, either. But if I wasn’t going to be able to be plain jane normal, I was going to control the narrative the best I could. So I was the school faggot who wore six inch stilettos to class because fuck the patriarchy, amiright? I mean, if I wasn’t going to be able to be normal, I might as well be balls-to-the-wall obnoxious. I sure wasn’t going to blend in with the jocks or the gamers or the preppy girls, so there I was making questionable life choices in zebra print jeans and a leopard print purse.  Still, somewhere underneath three inches of caked-on foundation and bleached, blue, green, red, black, damaged hair, all I wanted was to be normal. I clearly wasn’t motivated to put in an effort to make myself normal, because I have all the self-motivation of a sunbathing iguana, but if I’d have woken up one morning with some innate ability to fly under the radar, my dreams would have come true. Nobody said teenage me was good with logic, alright?

       Because none of the above were labels enough and because we live in a society where we worship excess, I further became the kid with the eating disorder, the kid whose life basically just frayed at the seams until I was spending my eighteenth birthday in the hospital, where surprisingly, I kind of felt…normal? I mean, not one of us there was normal - we were all twisted by some unknown force, hiding mashed potatoes in uggs, pouring shots of ensure in the carpet, and splashing urine samples on the poor nurses (poor woman coincidentally retired that same year). We had fixations that bonded us, a common experience in the ridiculousness of being told to lick out jam packets and eat the cores of apples (Laura, I’ve been recovered for a while now and you’re still just wrong on that front). I fit in without trying, and it was oddly comforting. When I left treatment, my life became as normal as I imagine it will ever be. I worked two jobs, found myself in a relationship that didn’t careen off the tracks (bless Joey’s heart), and then went away for school. It was the Canadian dream, and it was wonderful. I adored it. I mean, my roommates in Ottawa shat on the floors and made hash with my hair straightener, but I was normal! It was everyone else who was crazy - a true revelation.

      Fast forward a few years and we get to the point of all this rambling about my life story. I was studying (lol) at Ryerson and I’d met fellow normals who I did normal university student stuff with like the wonderful normal me wanted. Except my one friend kept telling me I needed to get my eyes checked because apparently I couldn’t see well enough. Like, excuse me? I could see just damn fine thank you it wasn’t my fault other people got in my way or things moved into my path or that cars didn’t pay attention to pedestrians or that sometimes it was just too damn dark outside, okay?. “But no seriously”, Mathew said, “you should be able to see more. It’s probably like glaucoma or cataracts or something, just get your eyes tested”. The man works for Lasik MD, so I immediately heeded his words of advice…like nine months later.

      It was now October of 2015, and I was normal, god damn it. I sat with patron saint Joey in an eye doctor’s office with a Louis Vuitton print trash can (I couldn’t make this up, I swear) and a poster of Patrick Dempsey on the wall. “MCDREAMY LIVES” I believe was what Joey said to me. This was a real eye doctor, not just some man my mother, bless her heart, was harboring a not-so-secret crush for. I sat through what seemed like a ridiculous number of tests that featured some eye drops that truly made me unable to see - I haven’t sent so many misspelled texts since the drunken lead up to my hospitalization.

      My first sign that “whoops, maybe Mathew was right” was when I was doing a field of vision test where I was supposed to be pressing buttons whenever I saw a flash of light - the visual version of a hearing test I’d been doing since I was like four and screaming into a microphone at some poor audiologist who deserved better in life because he wasn’t MY audiologist. I digress. Anyways, the lady running the test kept telling me “so you need to press the button when you see the light. Do you see the light? You have to press the button! So you know to press the button? Press the button!” In my mind I was cussing her out - “GURL I AM DOING THE BEST I CAN I HAVE PRESSED THE BUTTON A MULTITUDE OF TIMES I HAVE SEEN LIGHTS” - but in reality, “yes. I understand. Gotcha. *click*. *click*. Want to feel like an imbecile? Sit in front of a machine with your face in a cage and listen to someone dispassionately remind you that you need to press the button blah blah blah.

     Finally at long last, Gentle Male Eye Doctor (GMED) sat down with me to discuss the results of the test I had clearly failed like I had grade 11 chemistry. “So, you see this picture here? That’s your retina. These little lines here are *eye doctor jumble I could not reproduce for the life of me*. Your visual field test reinforces my first thoughts when I looked at these images”. Sure, GMED, tell me all about my cataracts so I can get Mathew to get me a sweet discount and I can get back to my normal life. “It looks like you have retinitis pigmentosa”. Screech. Hands up, y’all, if you’ve ever heard of retinitis pigmentosa before. Zero? Good, we’re all on the same page here.

“It’s a genetic degenerative condition”

“I’m guessing from the look on your face, that’s not a good thing?”

“No.”

“So how do we like, deal with it?”

“There’s no cure”.

“Okay, but like how do we treat it to keep it from getting worse?”

“Well…there’s not really anything we can do. I’m going to refer you to a retina specialist. Don’t google it, okay?”

“Sure.”

So I went to pay, kind of just shell shocked because how exactly are you supposed to fucking process something you don’t know about? Turns out I now get free eye exams because of my condition (it’s all coming up sunshine for #sashagay!).

What’s the first thing I did when I got home? Did I

A) Have a healthy snack

B) Read Great Expectations for class

C) Go for a light jog

D) Google what the fuck retinitis pigmentosa is

The correct answer, of course, is D. (When is D not the answer to everything? - I couldn’t resist)  I remained #chill the best I could, because I had not yet seen a retina specialist, which I still wasn’t sure was a legitimate thing, nor had my diagnosis confirmed.

      That’s a lie. I was #unchill. Before I’d had my formal diagnosis I knew all about RP and all sorts of fun (read: scary) facts about it. And then they confirmed my diagnosis. I am going blind. Retinitis Pigmentosa is, as GMED stated, a genetic degenerative eye condition. In laymans terms, you start with a loss of night vision coupled with a loss of peripheral vision. 

If nothing else, I know now I’m not the only one who hates those damn signs

I wasn’t walking into “caution when wet” signs and TTC station employees and small children and off curbs and into oncoming traffic because of a lack of grace. I had been losing peripheral vision that would have allowed me to see all of the above. Other people didn’t just have superior night vision like some freakshow - they just had normal eyes that saw trees, stairs, and again, small children. (If you take nothing else away from all this, take away the knowledge that small children are the worst). Again as GMED had said, there is currently no treatment. There is no cure. I will continue to lose my vision at an undetermined rate until I am first legally blind, and eventually completely blind.

     In many ways, I am incredibly lucky. My visual acuity - the field of vision in which I can see - is pretty damn good. I can see the world around me and as of yet am largely unaffected by my condition. I have no problem reading, walking around my neighbourhood, or doing my job. I’m pretty much as normal as I was before - for now. I will never be able to drive (GMED looked like he might faint when I told him I’d driven to my appointment until I clarified that Joey was behind the wheel). I’ll never be able to see the stars at night, or go to the movies without feeling like I’m in some sort of Survivor challenge. And I’ll become, eventually, more and more reliant on using assistive devices to get around and do the things I can do uninhibited today. At my last eye exam, a different doctor told me that A) I have a field of vision of approximately 50 degrees, having lost about two-four degrees of vision in the last year, and that B) given a continual degree of degeneration, I will be lucky if I make it to 35 before I become legally blind.

So if you look at the above diagram I have so helpfully provided, you’ll see what my vision loss at this point looks like. I have approximately 25 degrees of vision in each eye - so slightly less than the full thirty degrees of ‘near peripheral’ vision a person with no visual impairment would have. Legally blind is 20 degrees of peripheral vision, so about the triangle you see labelled here as macular vision.

      Retinitis Pigmentosa isn’t a super common condition - something like one in 4,000 people have the condition, but even that isn’t confirmed. There’s not really a ton of research out there, so the information available isn’t totally reliable. General consensus seems to be that those of us with the condition lose the majority of their vision in their twenties (that’s me!) and 90% of us are legally blind by the age of 40, both of which align with what my doctor told me. So that’s what I’m essentially basing my outlook on: having approximately 12 years until I’m considered legally blind, with a steady (or rapid???) rate of decline in my field of vision until then. It’s a weird situation.

      I finished out my last year of university as a “normal”, basically acting as though nothing has changed. Today, I am qualified to tell you I have a bachelor’s degree in English. That’s it - there’s really not much else that degree qualifies you for, in all honesty. Just after that, I finally set up my referral with the Canadian National Institute for the Blind. I’ve taken Orientation and Mobility training where I’ve learned how to use my white cane. When I’m out in the dark, in crowded places, or just unfamiliar places, I use my cane to let other people know I’m a public menace (that’s not meant to be a jab at other visually impaired people; my condition truly manifests itself in me being a danger to children and those little wire baskets at Shoppers Drug Mart) and to help me navigate more effectively.

      I should clarify a few things. I’m not ‘normal’ any more, and I won’t be any time in the future. You win some, you lose some, and I’m pretty much okay with that right now. I can still see. I’m not legally blind. If I’m out with my cane, it doesn’t mean I’m 100% blind. I will, sir, be able to see you pulling out your fucking polaroid at the subway station to take a picture of me from three feet away. (True story. I looked damn cute that day, though, so can we blame him?). I’m visually impaired, so I do walk into a lot of things and people. I will miss you waving at me from five feet away, since I can’t see to either side of me and I’m usually focused on trying to see what’s in front of me. I can still beat my face like a RuPaul’s Drag Race reject, but I can’t ride a bike by myself. I can still go to work and do my thing, but I can’t see you handing me something. I can still text, use my computer, put together a cute lewk, and be an internet sensation, but I can’t find anything to save my life. Where’s my hearing aid? Where’d I leave my phone? What did I do with my lighter? 

Trying to help me find something? Keep this in mind so I don’t hulk out on you

Game over. It takes me forever to find anything, because my eyes don’t scan the way someone who isn’t visually impaired would be able to. My boss likes to play a game on her iPad that has her looking for objects in a dark room with a flashlight that only lights up a small bit of said room- it would be a fun game to try out, except that’s my life. Poor embattled Joey and I went to Mexico last summer and he wanted to try out a ‘eat in the dark experience’ - except that was every dining experience I had, because “ambient lighting” really means “#sashagay comes mere millimetres away from impaling himself and/or giving himself a second-degree burn”.

      So, I’ve never been normal. I’m relatively used to being different - it’s just on a bigger scale now. My friends are all graduating university or working their way up in their respective fields; they’re building careers and establishing themselves. For me, that’s a weird thing to think about, because how do I go about building a career when I A) don’t know what exactly I want to do with my life, and B) don’t really know how long I’ll have enough usable vision to work in that career? 80% of people who are legally blind are unemployed - and to me, that’s not unbelievable, because it’s hard to imagine what I’m going to do when I’m blind.

      None of this is to say poor pitiful me, give me a pep talk about how I can do anything I can put my mind to. I’m not giving up on my life or any hope for the future. I consider myself a realist. If 80% of people who are legally blind are unemployed, there is a very good chance I will be in that percentage. If my vision is continuing to degrade, the likelihood of my life changing in a dramatic fashion is pretty damn high. People who say “you can do anything! I know a blind person who’s curing cancer, who’s an astronaut, who’s a grammy-award-winning singer” (hey Stevie Wonder!) are trying to be positive and uplifting. But those people are the exception to the rule. Telling me, unprompted, that I am going to be a force to be reckoned with and that nothing will stand in my way, is not helpful. I’ve never had astronomical aspirations for myself - all I wanted was to be normal. If I wasn’t going to win a nobel prize before, I really don’t see it happening anytime soon. It’s not defeatist, because I know I’m going to be okay. I’m going to work on my goals as they come. I’m going to do volunteer work when I can’t hold down a job. I’m going to be a fucking fabulous uncle to my nieces and nephews when they come around. I’m going to raise awareness and fight for the causes I believe in. I’ll just be adding a splash of Helen Keller realness to anything I do.

      It’s just a weird situation to be in, to be in your early(ish) twenties and know that you’re going blind. How do you plan for that? How do you build a life around that? I said before: I like to be in control. I’m not. It’s scary. But I’ll be okay. I have an amazing family who would move hell and earth for me. I have Joey, who isn’t going anywhere so long as I can dangle a handicap parking spot in front of him. I have incredible friends and colleagues who would never leave me dangling on my own (except when they forget I can’t see them and turn and walk in a different direction than me - oops). I have new friends I’m making in the community - hey Mara! - who show me that I’m going to be okay, that retinitis pigmentosa isn’t game over.

     I don’t have a super cute way to end all this, so I’ll just end off by saying I hope I’ve brought some awareness to y’all with all these words since it is retinitis pigmentosa awareness month. Here’s to not being normal!

As I Go Blind

As I go blind, please feel free to ask me what I can see. It changes constantly, and you’re curiosity shows me you are not afraid.

As I go blind, also ask me what I can hear, feel, and smell. I am learning to experience the world in a new and different way that can be astounding.

As I go blind, be patient with me as it may take me longer to complete tasks. The world can be nice at a slower pace too.

As I go blind, don’t expect me to be the poster child for blindness or always upbeat. I am terrified sometimes.

As I go blind, let me make jokes about my blindness. It helps me to be less afraid.

As I go blind, if you don’t know how to help me, ask. I will show you how to do so.

As I go blind, if I say I don’t need help, don’t be offended. I am still an independent person. I know if I need help or not.

As I go blind, don’t treat me like your pet or someone you have to fix. I’m not broken, just different.

As I go blind, understand that I am going to become more acutely aware that ableism exists. I am truly sorry I failed to realize how much of an issue this was until it affected me. Don’t make the same mistake.

As I go blind, don’t pity me. I am still human. I am still alive. My life is just as much worth living as yours.

As I go blind, remember that my wants and wishes may differ from those of another person with vision difficulties. We all deserve to be respected as individuals.

As I go blind, remember that I am still myself and that is never going to change.

“I figured I would share my story with you all. I was diagnosed with RP when I was only seven years old. Growing up I would get made fun of all the time because people didn’t understand why I was always bumping into things and why I had to use flashlight at the movies. I was so self conscious about my condition and I would do everything in my power to make sure that people didn’t know what was going on with me. It went on like this all through high school and it wasn’t until my early twenties when I started being comfortable with sharing my story. Ironically, the more that I started to talk about my RP, the more I accepted it and it became something that empowered me. I was no longer afraid of being teased and if people still wanted to be rude, I didn’t care. I am who I am and I can’t control my condition but I am control how I feel about it. Let your shortcomings empower you. Do not let them hold you back!”

4

(For @sixpenceee) (click on picture for captions)

Retinitis Pigmentosa (RP) is a genetic disorder caused by DNA mutation that effects the retina’s ability to process light. The disorder begins with a loss of night vision, then peripheral vision, then to the “pinhole vision” showed in the bottom right hand picture. Eventually, according to the American Academy of Ophthalmology, blindess results.

RP causes cells called rods and cones within the retina to die, resulting in the loss of color perception and central vision. As shown in the following diagrams, the Fundus is severely deteriorated: 

Normal Retina 

RP Retina 

Currently, there is no cure for this disorder. 

Eyeballs.

Results from my MRI-with-dye were suggestive, but not diagnostic of Multiple Sclerosis. Due to a lack of neurological symptoms, it is safe to say I dont have MS in addition to my RP, but I need to be on the lookout.

Results from London confirmed that not only do I for sure have Retinitis Pigmentosa, but it is extremely advanced. Oh super yay fun. Ill get a call in the next two weeks with an appointment to meet a specialist in Toronto and get genetic testing. Once its determined what gene its on and what qualities it has and who I got it from, my whole family gets to get tested to. Mom, dad, Rich, and Donnie. It probably wont extend to aunt/uncles/cousins/Opa, but theyll be informed and can probably get tested on their own, or at least know ahead of time so RP doesnt sneak up and whack them over the head like it did with me.

I did a brief bit of research and since I wont be 100% blind until probably some time after I turn 50 (so about double my current existance) I can still do all the things I love. Read, sew, craft, etc. But once my vision is gone, Ill be able to read if I learn Braille, I might still be able to sew if i use a needle guard and mark the lines on fabric really well, and I can take up sculpting/pottery/woodcarving.

Itll be ok.

Im still fucking scared though.

Introduction (I'm blind with a guide dog!)

Howdy! My name is Jess and I’m a blogger at thewayeyeseetheworld.wordpress.com. I have Retinitis Pigmentosa and for quite a while I blogged about that. Three months ago I was blessed to receive a guide dog, Makiko, from Guide Dogs for the Blind and I now frequently post about her and experiences with having a new guide dog. I am on Tumblr to learn what others experiences are that don’t use Wordpress and to share my blog with another community. I look forward to reading your blogs. Thank you :) 

Low Vision ≠ Low IQ

Outrageous claim: I may be going blind, but I’m not a moron.

I’m in the middle of a heated debate with the leaders of a support group for people with retinitis pigmentosa. I was diagnosed with RP at age 13 and have been riding the line of legal blindness for about ten years.

Quick background: RP is a degenerative eye disease that causes light and color receptors in the retina (rods and cones) to die. It starts at the outside of the retina, so it affects peripheral and low-light vision in early stages. The result of this is severe tunnel vision, which manifests (at least in my case) as clumsiness and/or rudeness. (I’ve unknowingly snubbed many a handshake in my time.) Later stages bring about waterlogging in the retina, which blurs central vision. Progression of both of these eventually leads to total blindness, though the rate of progression varies from person to person. There is no cure.

The group in question recently posted an article on their blog about how to sign up for Twitter, which was the catalyst for this debate. The article makes no mention of RP (i.e., how to use social media to connect with organizations involved with RP or other RP patients). It is literally a Twitter instruction manual. I have been known to be sensitive about certain topics, especially where RP is involved, but I found the inclusion of this article on the group’s blog condescending and offensive.

I recently heard a story on NPR about Katherine Bouton, who discussed the effects of spontaneous deafness in one ear. She authors a book called Shouting Won’t Help, and it really struck a chord with me. When someone has RP, it’s not always obvious, which has pros and cons. On one hand, an RP patient may be met with situations that make them appear clumsy, rude, drunk and/or stupid, such as these things that have happened to me:

  • Tripping over an unsupervised toddler at the movie theatre and dropping a jumbo tub of popcorn
  • Failing as a floor hockey goalie when the opposite goalie threw the ball across the gym in my direction and scored
  • Appearing to ignore a new acquaintance, who held his hand up to high-five me in a poorly lit establishment
  • Routinely knocking over full glasses of wine/pop/water at restaurants
  • In broad daylight, falling off the curb and onto the street while walking with a new romantic partner

The upside is that I have learned from these things and can take necessary precautions. Just as a person with hearing loss might face away from light sources so that they are better able to lip read, I can make sure I’m walking on the inside of the sidewalk and put my drink in the same place every time I sit down so that I know where it is. The fact that I can’t see well isn’t outwardly apparent to most people, so I get to choose who I tell and when. I’m not nearly as scared of losing my vision as I am about how I will be treated when it becomes obvious to the world that I am blind.

Maybe not all people suffering from vision loss feel this, but I want to maintain as much independence as possible for as long as possible. I might not be a good choice for the dodgeball team, but I can certainly figure out how to sign up for social networking sites myself. The fact that this is being featured on a blog for the RP community sends a message that members must not be smart enough to figure even the simplest things out for themselves. It assumes that RP patients are technology challenged and incapable of logical thinking. They might as well have posted an article about how to tie your shoe.

The author asserts that the article is relevant because another member asked about how to use Twitter, and if the information is useful for one, then others might find it useful as well. This may be true; however, I argue that, even if this is the case, there are FAR better resources available to help people use Twitter. It’s a support group, not a tech blog.

I was a member of an RP support group in London and only went to one event. I was 23 at the time and was the most junior attendee by at least 20 years. It was terrifying to meet a coffee shop full of people wearing sunglasses who had white canes and seeing eye dogs. I kept thinking, “This is my future. This is what’s going to happen to me.”

I was hoping that some people my age — I know they’re out there — would show up and be able to share the concerns that I had. When is the best time to tell new boyfriends that I have RP? Is it worth starting cane training now? When should I stop driving? Which bars and clubs have good lighting, so that I can enjoy nights out with my friends? This is what I’d like from a support group.

In my mind, an RP blog that explains how to enter your email address into a web form is akin to being in the coffee shop for that first and only support group meeting. I want to belong to a support group that I feel comfortable identifying with. The difference is that I simply wasn’t at a stage that allowed me to identify with the group in London.

One of the responsibilities of a support group is to accurately represent its members. I have a lot of trouble identifying with a group that presents me as an idiot.

I’m not going blind with dignity. I’m going blind alone and scared. I’m going blind sitting in the only patch of light in a public space just sobbing. I’m going blind and realizing how loud the world is. I’m going blind and getting constantly kicked out of places where it is assumed I’m drunk instead of disabled. And it sucks.

Dreams

I keep having this recurring dream where my vision is not all the way gone ,but very blurred to where I can see things but not really. It feels like someone forced a blindfold on my eyes. It’s the most frustrating thing ever. Its so unfair and sad that I can’t get away from thoughts of the disease.

So. Today has been a really tough day. For those of you who don’t know me, or who I haven’t spoken to about, I have an eye condition called Retinitis Pigmentosa. It is a degenerative condition of the retina in my eye which means the cells are gradually dying one by one. It causes me to be night blind, or unable to see in the dark and also have no peripheral vision. 

Anyway. Today I went to the hospital to get some routine tests done. It turns out. my visual feed (how much I can see) has shrunk by over 50% in one year. That’s only one year. 12 months. So, due to this, I have been registered as severely sighted, or legally blind. 

I’m welcome to answering any questions about this that may help raise awareness of this condition.

Following You in the Dark

Premise: After Sam and Jess drag him to a private ballroom dance lesson, Dean decides to try dancing, intrigued by the instructor, Castiel, and Castiel isn’t at all deterred by the fact that Dean is blind.

Word count: 2,700

The retinitis pigmentosa that Dean had been born with hadn’t been too much of a problem growing up. He’d needed to wear prescription sunglasses all the time for the photophobia and his peripheral vision had been nonexistent, but he could still see. And then the disease suddenly sped up its degenerative rate. He’d been sixteen when he’d gone completely blind. Now, he was nearing his thirties and didn’t know what to do with his summer since his brother, Sam, had convinced him not to teach summer school this year. Sam had insisted it was so Dean could enjoy his break, but Dean was 90% sure his brother just wanted him to help plan his and Jess’ wedding.

“C’mon, get up,” Sam said somewhere near Dean’s left. By the volume and reverberance of his voice, he was standing in the living room doorway.

Dean’s hand paused over his book. “Why?”

“Jess and I have a ballroom dancing lesson tonight, and we’re not leaving you here alone.”

Dean grimaced. “I am perfectly capable of taking care of myself for an evening.”

“Yeah, but I’d be more comfortable if you came with.” Sam sounded apologetic, but maintained an authoritative tone that irked Dean.

“And why should I care what makes you comfortable? You have to give me more incentive than that.”

Sam let out a sigh, and judging by its volume, he was exasperated. “The dance instructor is hot.”

Dean’s brows rose. “That’s nice, but if you’ve forgotten, I’m blind.”

His voice, according to Jess, sounds like sex and honey wrapped in smoke.”

Keep reading

RP

So I was recently diagnosed with retinitis pigmentosa from a retinal specialist. It is a genetic disease of the retina that causes progressive vision loss. The first to go is your night vision then your peripheral till you have tunnel vision (in most cases). I was encouraged by my doctor and family to make the decision to not drive at night for safety reasons. It is just really hard at the age of 22 to already have to become dependent on people for driving. And I swear if one more person “thinks” they have this disease because they can’t see well at night. That’s why I haven’t told many people, I feel like even my close friends try and make it about themselves somehow. (I’m obviously not talking about the only 3 friends I have on tumblr). I don’t know I felt like rambling I might post more on this later?

Arima’s Vision at V14

This was going to be a post on Arima’s general fighting style but I’ll be focusing on just one thing this time.

Alright so I wrote this some time ago but tumblr deleted it when I clicked ‘post’ instead of … you know …actually fucking posting it.

So here I am, back to typing this out once again now that my bitterness is subsiding. It took me so long to get it all down too and now I’m doing it all over again :D


The main two points I want to focus on when talking about Arima’s fight vs Kaneki is that:

  • He couldn’t see Kaneki
  • He depends on his sense of hearing to be able to fight.

The signs start to point toward this in the first panel between Kaneki and Arima.

Arima already has problems with his vision and the dim environment of V14 (night vision being a serious weakness in people with Retinitis pigmentosa, something that Arima might have), along with the distance between him and Kaneki made it very unlikely that he’d be able to see him when he walked in. 

But he could hear Kaneki walking in (cue the creepy head turn).

Note the shading on Arima’s eyes. I’ll be pointing out the parts of chapters 137- 139 where there’s a lot of attention focused on how his eyes are presented.

At this point Arima is unaware of who Kaneki is and he’s just as disinterested in him as the ghouls littering the area. He’s running on autopilot when he starts walking towards the direction where he last heard footsteps.

The glare on his glasses shows his state of ‘blindness’.
In general this is something you’ll see a lot with Arima when he’s concentrating - in this case it means he’s not bothering with paying attention to his vision because it’s more efficient for him to focus on his other senses - specifically his hearing. Think of it as a state of hyper-awareness. Keeping his body physically neutral and mind focused are the two best options for a fighter with his disadvantage.

And again on the same page we see the panels focusing on Arima’s eyes.

Blank, unfocused, distant - still walking towards the place where he last heard the footsteps.

Throughout all this Kaneki is frozen in place since first stepping into V14. He’s panicking and unable to decide on his first move. 

His mistake?

Kaneki finally made a sound by stepping forward.

In that instant he’s impaled by Arima in the very next panel.

Note the position of Arima’s eyes. He’s not even sparing a glance in Kaneki’s direction. Still efficiently maintains his neutral stance.

Kaneki recovers but when he steps away in an attempt to flank Arima,

another immediate follow up to the sound.

The same pattern repeats itself above: eyes turned away from his opponent, never actually looking at Kaneki or where he’s hitting him. His face is turned downward in concentration.

You can also see that Arima has finally dropped his stance for something much more severe. When looking at the dramatic position of his left foot, it’s as if he’s a split second late in reacting to Kaneki’s movement and is catching up after having an “Ahha, found him!” moment.

At this point Kaneki completely freaks out and becomes an elephant in the room.

Swoosh swish indeed (no doubt Arima enjoys fighting).
Maybe if he was a bit more tactical with his kagune’s movements he may have gotten somewhere with this.

It’s only when Arima hears Kaneki reciting Hakushuu,

that he pauses to give us that famously out of the blue expression.

“That’s … not supposed to happen.”

No but really, hearing this poem was probably what snapped Arima out of his hyper-focused autopilot and made him want to at least attempt to see what was in front of him.

It didn’t take long after Kaneki telling him the author of the poem for Arima to finally put the pieces together and figure out who it is he’s fighting.

Then randomly, Arima starts telling Kaneki that if he pays close attention he can tell that it’s raining outside by the sound of the flowing sewer water.

This is relevant to one of the main points I’ve been mentioning: Arima is a person who’s dependent on his sense of hearing. 

The fact that he would point out something as obscure as this shows that he’s a person who pays attention to the sounds in his environment and has experience in using it to analyze his surroundings. 

But I don’t think this is the result of just practice. I think it’s also possible that Arima has a better than average sense of hearing due to genetics.

He’s 16 during JACK, an age where serious stages of vision loss are rare. I’ll assume that during that time Arima did not go out of his way to hone his sense of hearing because he could still depend on his eyes, yet…

he did something that made the fandom question the species he belonged to. How could he have pinpointed Yamori’s position so precisely? Most likely because genetically speaking, Arima was born with an impressive sense of hearing.

Whatever it is the Sunlit Garden does to their children, that trait may be the result of it.

Anyways, that’s mostly what I wanted to say. Also the post isn’t implying that Arima was literally blind during V14.

The dimly lit underground enclosure + Arima’s habit of shirking his deteriorating vision aside during battles was what resulted in him behaving as if he were.

That is all thanks, feel free to message me about this because I left out some explanations because I didn’t want the post to get any longer. Hopefully that didn’t lead to any confusion :(


Bonus: I only decide to rewrite this because the people in my TG chat were seriously having fun with this shit. 

I present to you: Arimasaurus-Rex

by @daedalushlp

Eyesight to the Blind

by Pearl Tesler

Age, genetics, or sheer bad luck can land you among the 285 million people worldwide who are visually impaired. Among older adults in the Western world, the leading cause of blindness is degeneration of the photoreceptors in the eye—as in macular degeneration and retinitis pigmentosa.

Forming the top layer of the retina, photoreceptors are the screen on which the movie of your life plays. This thin, precious layer of cells detects light and converts it into electrical impulses that the visual system can understand. When the photoreceptors die, vision dies with them.

So far, stem cell therapy—so promising in theory—has failed to deliver any cures. Yet hope is taking clearer and clearer shape, in the form of tiny photovoltaic tiles that could do for vision what cochlear implants have done for hearing.

Speaking last week at the AAAS Annual Meeting in San Jose, Daniel Palanker of Stanford University explained the new prosthetic vision technology, successfully tested on rats.

First, tiny arrays of infrared-sensitive tiles—each just a millimeter across but bearing thousands of electrodes—are injected into the retina. Then, a pair of special glasses beams an infrared view of the world into your eye. Much as solar panels do, the tiles “see” the infrared light, converting it into electrical impulses that travel via existing neural pathways into the brain. Voila: Vision restored.


Unlike other prosthetic retinas, no power source is needed inside the eye—the infrared light from the glasses supplies all the energy. Why infrared? To work well, this light must be fiercely bright, 1,000 times normal. Blasting even an impaired eye with visible light this intense would be, well, blinding. Infrared light, however, is invisible to normal human photoreceptors.

The “installation” of the tiles is relatively non-invasive, in part because the tiles only need to be placed in a small region of the retina called the fovea, where photoreceptors are densely packed. “We live in a world of illusions,” says Palanker, “many of them created by the brain.” By constant jittering and shifting, our eyes keep the fovea darting this way and that, creating the illusion of a full-field view.

Human trials are scheduled to begin soon. Ultimately, by shrinking the size of the pixels on the tiles, Palanker expects the system could achieve visual acuities up to 20/100—not quite perfect, but a far sight better than blind.

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i decided to start posting more personal stuff on here, so to kick us off here’s a poem about my mom’s disability. x

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Blind man sees wife for the first time in a decade using bionic eye