A Reddit Post By u/GloomyCoconut And An Answer From Me
I need some positivity 🙏
22f with RP. Definitely terrified. Went to my first meeting at the local blind society. They spoke about the high unemployment rate, lack of Independence, and about thanking our caretakers (I may have had to leave the room to burts into tears in the bathroom at this point).
Some people tell me that there is life after I lose my vision but the meeting didn't make me feel like it was one worth living.
But I have also heard from other people that there are positives and maybe I can still be independent, employed, and only need help occasionally.
So is there some warmth at the end of this tunnel?
Edited: My atrocious spelling.
Hi Coconut,
You're going to be okay. I promise.
I have RP just like you. Well, probably not just like you. Whatever kind of RP I have doesn't match any other in the existing genetic database. My ophthalmologist thinks I might be the source of a new genetic mutation. There are 160 different kinds of RP the doctors know about - I'm proof there's at least one more they don't know about yet.
Anyway, whatever's happening to us thanks to RP, it's okay. My vision is maybe 90% gone and the rest will probably disappear in a year - or maybe by Christmas. Nobody knows. But it doesn't matter. I'm still me.
And you will still be you.
Blindness isn't a tragedy, it's just an inconvenience. It won't stop you from living a happy, exciting, fulfilling life.
You are just as worthy in the passenger seat as you were in the driver's seat. You are just as loved in the darkness as you were in the light. You are every bit as necessary today as you were a few years back.
You matter.
Well, you matter unless you're multiplied by the speed of light squared, then you energy.
You matter. You are just as beautiful, just as worthy of love, just as deserving of respect, as anybody else.
Please remember this. It's important. You are still you and the world absolutely needs you to be complete.
Yes, there's an upside to all this. Blindness isn't a roadblock, it's just a speed bump. You can do anything anyone else can do, you will just do it differently.
I often say going blind is hard but being blind is actually easy. In some ways I've found it weirdly fun. My kids say I look like a badass in dark glasses. I have a great excuse to hold my wife's hand. People see my white cane and give me the right of way. Going blind taught me to appreciate the things in life I used to take for granted. I live in the moment now, and I take time to smell life's roses.
The last year has been the happiest year of my life.
But it's hard to get to the happy ending. I grieved the loss of my eyesight. I grieved the loss of my potential. I grieved the loss of my dreams. I even grieved the loss of my identity. None of that was easy. I documented it all in real time both here and in my blog. I'll share the links if you want. There were some dark days in the beginning, when I lost my dreams and my identity.
But those dark times didn't last, metaphorically anyway. I made a blind bucket list. I found new dreams to pursue. I made a new identity for myself, one based on love instead of on being Mr. Employee of the Month.
Most importantly, I accepted myself. I don't need to bring home a paycheck to matter to my wife and kids. I don't need to earn the respect of my coworkers to feel respectable. I'm just me and I realize that's good enough. Because I'm good enough.
So are you.
It doesn't matter if we can see or not. What matters is if we can love or not. Because I finally understand it's our capacity to love that makes us human.
You mentioned you're concerned about caretakers. I get it - nobody wants to feel useless or like their very existence is a burden to other people.
But aren't we all caretakers in a way? Yeah, my wife has to drive me around because I can't drive myself, but I cook dinner for the family and do the dishes and listen to her and dance with her and hike with her and hold her when she falls asleep.
I'm as much of a caretaker for her as she is for me. That's what lovers do.
If you don't have a snuggle bunny of your own you can still be a caretaker to everyone around you. You can care for their emotional needs. You can make them feel appreciated and beautiful. You can make them feel heard. You can make them feel respected.
Being cared for isn't a one way street. Each of us has something to give and something we need to receive. Wait, that sounds transactional. I didn't mean it that way. We all take care of each other, that's what I'm trying to say. I may not be able to do the things I used to be able to but I ain't dead yet. There are still many things I can do to make the world a happier, healthier place. And I give everything I can.
You can, too. Aren't compliments important to someone's well-being?
I hope I'm making sense. A sincere friendship is so much more necessary than good eyesight so don't think you don't have anything to offer to the world. Do you see what you can be without eyesight? Do you realize how necessary you can be to someone? Do you get it? Do you get how much more important it is to love and to listen than just to give someone a ride to the grocery store and help them know which pill bottle contains which meds?
Be the caretaker to the people around you. Be the love this world needs. You don't need 20/20 vision to matter.
This turned into another mini novel, didn't it? I keep telling u/Rumster to get me an editor. I'm sorry if I rambled on and on but I'm not sorry, too. I'm not sorry because you need to know the truth about blindness and I did my best to share my truth with you.
Your potential to love isn't connected to your ability to see. If you want to feel like you're contributing to society and not just being a burden then unleash a love on us that lifts our spirits and makes us happy we encountered you today.
Blindness isn't the end. Your real life has just begun.
You got this, Coco. Now go make the world smile.
My DMs are always open.
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