There are a lot of people who visit here who have just found out about their visual issues. Thought I’d share what happened to me.
Twenty years ago, this month, I found out about RP. All those emotions still feel so raw and real. I was in my twenty’s, working a corporate job and married. We lived in the suburbs an hour’s drive from downtown. Within six months, I had to stop driving, take up cane training. I lost the house and spouse. All the sudden change threw me into a year long depression. I managed to keep working for another decade.
Since then, I’ve averaged an eye surgery every couple of years. I've had complications and secondary eye diseases. I’ve so far managed to keep from, somehow, going total (despite being written off by retina specialists twice).
I re-married to someone not afraid of my disability and am a stay at home parent. Life’s good, life’s a struggle. Just like anyone else. The point I’m trying to make is that life goes on. Twenty years ago, I thought my life was over. It's hard to hear this when you've just found out but it's not the end. It turned out just to be an end and then a beginning.
dankswed4 points4y ago
Wow. This made me tear up, both in happiness and sadness. I'm sorry, and thank you.
matt_may [OP]2 points4y ago
Cool. I'm still processing how it's been 20 years!
cookieinaloop3 points4y ago
I'm also in my 20's, but already 20+ years of RP. Glad you realized it's not a death sentence.
blind_devotion082 points4y ago
I'll be at the 20-year anniversary of my diagnosis in 2021, but I was legally blind before then. Then again, I was just a kid.
Keep on keeping on, OP. Glad you're in a good place.
happyforyoubutami2 points4y ago
As a stay at home dad, do you do the night stuff? How do you balance needing light and not overly exciting/waking up the kids? If they’re older, how did you handle it when they were younger?
We have a 6 month old, and I do the all the night stuff because my husband doesn’t feel comfortable doing it all in the dark. (We both work full time; baby is in daycare during the day). I want to have another baby soon (we aren’t spring chickens), but that would mean needing to tag team things at night. How did you get comfortable doing it without light?
matt_may [OP]2 points4y ago
I am classically night blind. I don't remember this being too big of an issue. I could usually get away with using a hall light or something. If the kids needed me at night, they were awake. Good luck!
yourmommaisaunicorn2 points4y ago
I too have RP (Ushers which is just added hearing loss for fun), but why did you need surgery? My doc hasn’t said anything about that.
matt_may [OP]1 points4y ago
Cataracts in both eyes, YAGs to correct issues with the cataract surgery and removal of corneal growths. It's been fun!
Duriello1 points4y ago
My experience is the total opposite. I used to have an easy life, because I have instinctively always known how to succeed, not due to being privileged, and when I started losing my sight I assumed it would continue to be easy. Unfortunately for me I ended up finding the inconveniences brought by blindness to be way too cumbersome to continue living a happy life. It's not that I can't get things done, it's more that blindness is an unsolvable problem that needs to be worked around every step of the way, which drains a lot of the energy that I could otherwise use to solve actual solvable problems. I don't feel that I'm limited, I feel that I'm over encumbered, and as a result of that I default to doing nothing every day, because I find living in a perpetual limbo where nothing of interesting ever happens to be better than having to work around blindness all the time.
matt_may [OP]1 points4y ago
I'm sorry you're going through difficulties. It sounds like depression to me. I've certainly had my bouts of it. Finding purpose can be hard. I ended up going back to college and getting another degree. Good luck!
Duriello1 points4y ago
If it's depression then I've been depressed my entire life, because I've always been intolerant to inconveniences and as a result used to implement solutions to problems as soon as I identified them. The difference now is that I'm faced with an unsolvable problem, so my reaction is to stand still awaiting for someone to find a solution.
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