Blind and Visually Impaired Community
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Losing my sight and looking for advice (self.Blind)
submitted by DrLuobo
Hello all. Like many of you I have had problems with my eyes from a young age (5 or 6), which resulted in blindness in one eye (no light perception at all). Around the time I was 18, the same problems hit my seeing eye, and through a combination of new medicines and treatments my sight was partially saved in the seeing eye.
About 10 years after that, present day, and the problem is progressing again, and it seems there's no stopping it this time. I am losing sight in my other eye. I am scared and so is my wife. I'm afraid I won't be able to take part in my hobbies (electronics, DIY, woodworking, biking). I'm afraid that I will not see my child when they are born. My wife has asked if she should start working, if I will have to quit my job, if we should sell our house and bit a condo instead where they will do maintenance and lawn care, etc. I feel these are drastic responses, but I am also thinking about the little things, about what I should be doing to prepare.
I am a professor at a research university and I don't think there's any concern for my job (I really could teach a class with my eyes closed, and I assume writing a research grant proposal will be perhaps a slower process, and I won't be able to make graphics easily, but...my graduate students can probably help there...)
I have lost most of my peripheral vision through optic nerve damage. I also do not have a lens in my eye due to cataract surgery and due to other complications, no lens implant. However my central vision is still quite good with a contact lens (20/25). Just basically monocular tunnel vision at this point.
So, in short, what advice would you give someone who is losing their eyesight? The timeframe is unclear but I want to be prepared as best as I can at this point. I have been reading some articles on line and of course have spoken with my doctor about it, but I thought I would ask for advice here too.
Thanks in advance for taking the time to go through my post. I would really appreciate hearing about any of your experiences especially if you've been in a similar situation.
About 10 years after that, present day, and the problem is progressing again, and it seems there's no stopping it this time. I am losing sight in my other eye. I am scared and so is my wife. I'm afraid I won't be able to take part in my hobbies (electronics, DIY, woodworking, biking). I'm afraid that I will not see my child when they are born. My wife has asked if she should start working, if I will have to quit my job, if we should sell our house and bit a condo instead where they will do maintenance and lawn care, etc. I feel these are drastic responses, but I am also thinking about the little things, about what I should be doing to prepare.
I am a professor at a research university and I don't think there's any concern for my job (I really could teach a class with my eyes closed, and I assume writing a research grant proposal will be perhaps a slower process, and I won't be able to make graphics easily, but...my graduate students can probably help there...)
I have lost most of my peripheral vision through optic nerve damage. I also do not have a lens in my eye due to cataract surgery and due to other complications, no lens implant. However my central vision is still quite good with a contact lens (20/25). Just basically monocular tunnel vision at this point.
So, in short, what advice would you give someone who is losing their eyesight? The timeframe is unclear but I want to be prepared as best as I can at this point. I have been reading some articles on line and of course have spoken with my doctor about it, but I thought I would ask for advice here too.
Thanks in advance for taking the time to go through my post. I would really appreciate hearing about any of your experiences especially if you've been in a similar situation.
solar-cabin 5 points 4y ago
Most of the things you enjoy you can still do without sight and just takes a work around.
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Electronics can be done and you will need to organize your work space so you have your materials and equipment in set locations for use and same for woodworking.
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You can still bike but get a tandem bike and let your wife or a friend steer while you pedal and enjoy the ride.
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You are most likely going to qualify as fully disabled which may change your income levels and you can find out how much it will change by contacting your disability offices. They can also tell you what free services you qualify for in education for training for a new career.
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Everything is still possible and medical treatments and new technology are being developed every day so don't give up and just prepare now so you are ready for that day if/when it comes.
​
Electronics can be done and you will need to organize your work space so you have your materials and equipment in set locations for use and same for woodworking.
​
You can still bike but get a tandem bike and let your wife or a friend steer while you pedal and enjoy the ride.
​
You are most likely going to qualify as fully disabled which may change your income levels and you can find out how much it will change by contacting your disability offices. They can also tell you what free services you qualify for in education for training for a new career.
​
Everything is still possible and medical treatments and new technology are being developed every day so don't give up and just prepare now so you are ready for that day if/when it comes.
vapidvision 2 points 4y ago
It may sound scary, and it may be hard to believe, but there is a woodshop at the Oregon Commission for the Blind run by a wonderful sightless man who still has all ten fingers. They also run a master class in gardening.
I don't know where you live, but if you contact your state's equivalent, I am sure they will have training programs or hobby classes for those hands-on activities. I am a little surprised to see that 'biking' is a hobby given the description of your eyesight:) might have to give that one up sooner than later; I was sad too, but track jogging is fun.
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Also consider looking into a guide dog program in your area. Both with practical and emotional aspects of eyesight loss, guide dogs are spectacular.
I don't know where you live, but if you contact your state's equivalent, I am sure they will have training programs or hobby classes for those hands-on activities. I am a little surprised to see that 'biking' is a hobby given the description of your eyesight:) might have to give that one up sooner than later; I was sad too, but track jogging is fun.
​
Also consider looking into a guide dog program in your area. Both with practical and emotional aspects of eyesight loss, guide dogs are spectacular.
Californiaolivia 2 points 4y ago
So you texted all that you are doing. I’m actually flabbergasted you are because usually you would be in the situation to do those accommodations. But I feel you are fine. I’m sorry you won't get to see your children. I recommend Be My Eyes app. If you don't have anyone to help at the moment use that. It’s amazing app. You call and volunteers answer and you can ask to help. If you have a bad experience you can review them bad. I hope to get a call from you someday. Learn Braille if you haven’t.
Hellsacomin94 1 points 4y ago
If you live in the US you should contact your state’s blind services or vocational rehabilitation service. They can help you get accommodations, technology that can make staying working better, and provide you with Orientation & Mobil ty training(to help you get around), .
If you enjoy your job and can have low cost grad student labor help you I don’t know why you’d quit. Also, if the university is large they may have a students with disabilities office that can patch you into the right people.
I wouldn’t be in a hurry to make major life decisions like selling a house or moving, especially if you like where you live. Selling a house and moving are expensive. If you run the numbers you can pay a lawn service and handyman a long time on what it takes to sell a house through a real estate agent.
Whatever you do, try not to do anything rash. It’s a stressful time, and people tend to make poor decisions when they’re stressed.
If you enjoy your job and can have low cost grad student labor help you I don’t know why you’d quit. Also, if the university is large they may have a students with disabilities office that can patch you into the right people.
I wouldn’t be in a hurry to make major life decisions like selling a house or moving, especially if you like where you live. Selling a house and moving are expensive. If you run the numbers you can pay a lawn service and handyman a long time on what it takes to sell a house through a real estate agent.
Whatever you do, try not to do anything rash. It’s a stressful time, and people tend to make poor decisions when they’re stressed.
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