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Keratoconus changed my life, my personality, and my soul—for good.

Keratoconus changed my life, my personality, and my soul—for good. @samyugarte

I felt like I was disappearing. Maybe it’s all a dream, I said. Maybe I’m dead, I thought. Maybe I’m going crazy, I believed. I don’t wish this to anybody. I went legally blind on march 2019 after being diagnosed with Keratoconus.

I’ve been recovering since a surgery I had to stop keratoconus from progressing and getting worse (Crosslinking / CXL). There’s one more surgery coming in 2020, to put Intacs in my corneas, it will make my vision go backwards with time, I’ll have them there forever.

I had many problems with my sight, from almost getting run over by cars for more than 5 times, to getting lost and not being able to find the street, to not being able to ride my longboard anymore, to not see the sunset the same way anymore. I was 21 When I heard the news, it was a Tuesday. You’re legally blind and you’re gonna go fully blind if you don’t have a surgery this Friday, my doctor said, I was numb, I didn’t know how to react. Surprise!, life said. No tears dropped, no facial expressions, no emotions. Why me? I thought. Why me…? I was numb the whole ride home. Thinking how did I manage to live and move around alone this last 2 years.

Using my senses. I was in college, studying acting, my strongest passion, luckily, they taught me all about controlling and using the rest of my senses, while I was slowly going bling, unconsciously, I was mastering to cope with my blindness.

After high school, I didn’t take a break, I wanted to keep going and to graduate from college at 21 years old, I couldn’t finish my last semester because I was diagnosed legally blind, I couldn’t get my acting degree, I got so close. I couldn’t do anything I wanted to do. I was ruined, so down, so stressed, so depressed. I couldn’t work. I couldn’t write. I felt like a failure and useless because of my disease, but I didn’t realize back then, it has nothing to do with failure, It’s life, destiny, and it was my turn to go through it. I’m not done, I only had to take a break because I never gave myself a chance to stop, so maybe this is life’s way of telling me to stop and breathe for a long period of time. I can’t do so many things that I want to do, but I only have to wait until my vision goes back. Next Year.

If I would’ve waited one more week to get my eyes checked, I would’ve gone totally blind. I got my eyes checked 3 times in Miami since 2016, they only said I had something that didn’t let them see through in my eyes. Got them checked as a teenager, many times, no doctor could diagnose me. My mom was told once, that I was always gonna have problems with my eyes, which I did. An eye doctor in Peru, in 2019, was the only one that could diagnose me, my corneas were too thin by then and I was on the edge of needing a cornea transplant. Those never end up good, my doctor said. I felt lucky, I felt so down, and now I feel so many things but I don’t ever want to complain.

I was awake only with local anesthesia during the surgery, so I could control my eyes to help the doctors, when we sleep deep our eyes go up and they wouldn’t be able to move forward with the surgery, I couldn’t feel pain for the most of it, I felt like a needle, it hurt and I calmly let them know, then, they put more eye drops to numb the pain, it was a very traumatic experience, seeing what they did to my eyes, cause the doctor at first, told me I was gonna be asleep, so, I prepared for that, but he waited to let me know the truth until the day of the surgery... I couldn’t prepare for it.

I had ulcers after the surgery because the wounds didn’t heal well. Also edemas, I used to have it in both my eyes for 2 months after the surgery, my world was black and white. My right eye still has one, when I see blond hair, I see it white with that eye. An edema is like a bruise, a reaction my eyes had after the surgery since my corneas were way too thin because of keratoconus, they’ll get rid of it on my next surgery. My doctor said my case post surgery was very rare and he has never experienced it before. I had it rough.

How I see with keratoconus

I get so much anxiety thinking I have to go through the pain again, and to let them cut my corneas again. At least, now, I have time to prepare myself.

I had to be in total darkness for more than a couple of days right after the surgery. When I was able to resist light afterwards, I saw silhouettes but they were glitched, the image repeated itself many times, like having a prism inside my eyes, it seemed bigger than a human being, the faces looked like weird glitched shadow monsters with weird dark wholes instead of eyes and mouth, there was no nose or eyebrows in my world. No facial expressions. No hair. No smiles. No connection. If I looked at your face, I knew where your eyes were due to the weird dark wholes, It’s weird and scary looking at my family and seeing something else instead of seeing them, having to say to myself that was not really them. Having to face the terrifying figures and accept that’s what I saw, but it’s not what it was.

I don’t know how I did to keep calm.

Maybe because I knew it wasn’t real.

It was like being in a never ending nightmare.

I felt trapped under a dome, cracked, alone. No doors, no windows, no way out, it was terrifying. Sometimes, I had no clue of what was around me, no idea of how to get out or where to go, it was then, when I suddenly felt a hand, touching my shoulder, a voice, that was apparently talking to me, I heard all the different type of sounds, like the melody of a bird, cars passing by, someone’s breathing, dogs barking and kids screaming from far away, so then I knew, I was safe.

I had to focus on myself, I had to bring myself back to me. I got so lost because I couldn’t see reality, my life was turned upside down. It was painful enough to suddenly be living that way, to suddenly lose all hope, to suddenly be so dependent of somebody else. To not be able to see my reflection in the mirror anymore, I felt like a ghost. I couldn’t see any perspective, I couldn’t walk on my own. I couldn’t see my beautiful tiny dog, but her presence is irreplaceable. Her smell. Her sniff. Just her.

It feels nice that I’m starting to see my family little by little, 8 months later and I’m starting to get their human form. Their smile. Their eyes. Their hair. It’s nice.

I am now 22 years old, I have a long way to go and I still can’t see everything clearly, I only have a bit of focus 8cm away from my eyes. I have to put everything closely to see it, when using my phone, it looks like I’m smelling it.

Now, It’s still all blurry and duplicated but not as it was, my eyes keep trying to find it’s focus when doing my normal activities, but, if I squint them, my left eye finds a focus, but it’s blurry, the image I see looks far, and my vision gets dark after 15 seconds. I get a lot of head rush, it doesn’t matter what I do, it comes randomly or after my eyes try to focus too long. The walls look like they move away and closer all the time, I’m always seeing things that don’t exist. I have bad migraines almost everyday.

I am now dyslexic, I am now colorblind. I’ve never experienced those things before.

I see my family different everyday, it’s exhausting having to get used to an image one day and then seeing it different the next one, the images I receive changes according to where the light comes from, also because the form of my corneas keep changing. It’s painful when the sun is shining, I used to love it but now it only burns my eyes. I miss feeling the warmth of the sun on my face, I miss looking at the clouds. I want to see the little things again. There’s no corner where I can be in peace. I can’t escape from this situation, I have to face it.

At least the images I receive changes, the shadow monster figures are disappearing, it’s different every time.

My only peace is my family’s voices. Their laughter. Their hugs. Their energy. Their essence. Their scent. Their presence.

My Mom took so much care of me, and she didn’t sleep or eat well for being so attended to me, even when she was dealing with her own problems. I can’t thank her enough. A Mom is truly capable of anything when it comes to their kids. I love her.

I have to thank my Dad for providing me everything that I needed, and that I still need. And the love he always gives. I love him.

After everything I’ve told you and so much more I haven’t said, I want to finish by saying.

I remember when I found out I was gonna go fully blind if I didn’t have surgery ASAP.

I used to say,

Why me?

But now that I went through it, I can say,

I’m glad it was me; maybe some other person wouldn’t have been able to handle it. It’s painful in all it’s forms. I took so much from this experience.

Things happen for a reason.

I learned and grew so much more. I faced my biggest fear since I was a kid. And it happened in the most terrifying way. Now, I’m not afraid of it anymore.

What doesn’t kill you makes you stronger.

I admit it, I felt like giving it all up many times. I really thought about putting an end to my pain, but, I didn’t do it. I want to tell my story, and feel great about it. I want to keep living this amazing life, I love life way too much to stop enjoying it and nothing is gonna stop me from doing so. I have so many goals in my life. I want to see my family again and not cause them any pain. So I want to reassure them, I am not going anywhere, this crazy family member of theirs will always be around as long as I can survive.

I will continue to be the happiest I’ve ever been. I can’t be grateful enough to all the people that has given me a hand, whether it was with their words or actions, It means a lot.

I never thought this would happen to me, but I am now glad, in 5 years from now, I can happily say, yes, I went legally blind when I was 21 years old but I fought my way back.

Now, I know the reason why to this whole situation and I’m gonna keep that to myself.

Thank you Samy; Thank you for not giving up.

*Appreciate the good things you have*

Peace and Love

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