How I met Retinitis Pigmentosa

It’s 1995. I’m still in primary school, hanging around with a friend called Facundo.  

Note: He was a hipster.  

It was the time when we were all watching The X-Files and wanting to be FBI agents.  

Note: We thought FBI agents were heroes, for some reason.  

So Facundo and I decided to start our own private detective agency.  

Note: We were 10 years old.  

We called it FBI of course, but in this case, it meant Facundo and Bruno Investigators.  

Note: I came up with the name.  

So we made some business cards and started going around asking people if they had any paranormal activity to report or if they had something that needed to be investigated.  

Note: We would actually ask people on the streets if they had seen any ghost or UFOs  

Even though Business was quite slow, that wasn’t going to stop us, we knew the truth was out there and we wanted to believe, so we decided to go out and investigate on our own, find our own unsolved mysteries.  

Note: We never found anything.  

At first we started sneaking into abandoned buildings, empty lots, basements, sewers, after that we moved on to rooftops, we got to know most secret passages to every building’s rooftop and after a while we got to navigate our neighborhood from above, climbing, jumping and swinging, it was almost like Assassin’s Creed.  

Note: It was nothing like Assassin’s Creed.  

And then one Sunday afternoon, while we were exploring the lightless cellar of an abandoned building by the river, I met her for the first time.   Facundo was navigating the dark alleys and underground passageways as if it was daylight, stealthy as a cat, while I stumbled upon every single obstacle on the way. Hitting my head and my legs with everything on the way and then pretending it didn’t hurt and trying to look tough.  

Note: It did hurt, a lot.  

So while being constantly left behind and trying to catch up to him, the 10 year old me started to wonder why he could see in the dark and I couldn’t. Then, suddenly, she decided to show herself in front of me.    

10 years old me: Who are you?  

???????: My name is Retinitis Pigmentosa.  

10 years old me: What are you? Are you an alien?  

Retinitis Pigmentosa: No, I’m an eye disease.  

10 years old me: From alien origin?  

Retinitis Pigmentosa: No.

10 years old me: Are you sure?   Retinitis Pigmentosa: Yes.

10 years old me: And what are you doing here?  

Retinitis Pigmentosa: I came to keep you company, I’ll be staying with you for a while.  

10 years old me: And what are you going to do to me?  

Retinitis Pigmentosa: I’m going to make your life very very difficult and in 30 years from now I’m going to take your eyesight for good.

10 years old me: Why in 30 years, why not now?

Retinitis Pigmentosa: You see, instead of doing it fast and painlessly from one day to the other, I will do it gradually, so each year you will see a bit less than the previous one, and you will remember what’s waiting for you. That way you’ll suffer more.

10 years old me: That’s like… so cruel!

Retinitis Pigmentosa: What can I say? I didn’t say it would be nice.

10 years old me: Why me?  

Retinitis Pigmentosa: Because f**k you Bruno, that’s why.  

10 years old me: What’s that language? I don’t like that kind of language.  

Retinitis Pigmentosa: You are going to be blind.

10 years old me: Just me?  

Retinitis Pigmentosa: No, I give it to 1 in 4.000 people.  

10 years old me: So, why did you choose me?  

Retinitis Pigmentosa: You asked that already.

10 years old me: Take Facundo’s  

Retinitis Pigmentosa: I can’t, he needs his.  

10 years old me: And I need mine too.  

Retinitis Pigmentosa: Well, it is what it is.

10 years old me: What does that mean?  

Retinitis Pigmentosa: You will understand when you grow up.  

10 years old me: “It is what it is”.  

Retinitis Pigmentosa: Problem?

10 years old me: No, I don’t care.  

Retinitis Pigmentosa: Watch your head!  

10 years old me: Ouch!      

Retinitis Pigmentosa:          

10 years old me:           

17 years and more than 17 scars later I learned to live with her. Learned to respect her and to respect her authority. When she says no, it means no.   When she says “you have 2 hours left of sunlight, better start heading back” I’ll head back.   When she says “don’t go there, it’s too dark, you will die.” I won’t go there.   When she says “you have 13 years left of eyesight, you better enjoy them” I’ll enjoy them.   And sometimes, not so often but sometimes, when people ask me why do I always wear a cap, or sunglasses indoors, or why I choose to stay at home after dusk, I may tell them this story you just read, or I may not.

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