Blind and Visually Impaired Community
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I found out I'm losing my eyesight and I need some advice career-wise. (self.Blind)
submitted by Immrmeeseeks125
I need some help/advice. A year ago I was diagnosed with having a retinal dystrophy. I was pretty devastated, to say the least. Today I am still coming to terms with the condition and I'd imagine I will constantly be coming to terms with it as my vision slowly deteriorates until I'm blind. I'm trying not to think about that too much. Currently, my vision is still pretty good although I noticed I can't see very well in the dark (although I manage) and I'm becoming a bit more clumsy and not so good at sports. I don't know what I have specifically but I think it may be Usher syndrome as I was born with moderate to severe hearing loss. I will find out my results after the completion of genetic tests in a few months time. I have no idea about how quickly the disease will progress. Hopefully, the results will help with that.
The reason for this post is that I'm trying to figure what to do next and with my life in general. I studied to become a scientist and I had my hopes on doing some form of research. However having good vision is important as a scientist and I don't think it's possible to be one without having good eyesight. Despite this, I still want to do it but maybe I'm in denial about my limitations. I recently got accepted into a couple of masters programs relating to scientific fields such as neuroscience and molecular biology. I don't know if I should do them. Will it be a waste of time in the long run? I also thought of doing research into retinal dystrophies but that is probably a little crazy although I think I'd be pretty passionate about it. Who knows? I haven't told many people about my newly discovered illness so I haven't been able to get proper advice from them because they don't know the full story hence why I'm posting here today.
Sorry if this post seems convoluted and lacks cohesion or pertinent information. I guess that sums up the confusion I feel at the moment. I'm just looking for people's two cents on this as (I hope) some of you guys may have been in similar situations.
The reason for this post is that I'm trying to figure what to do next and with my life in general. I studied to become a scientist and I had my hopes on doing some form of research. However having good vision is important as a scientist and I don't think it's possible to be one without having good eyesight. Despite this, I still want to do it but maybe I'm in denial about my limitations. I recently got accepted into a couple of masters programs relating to scientific fields such as neuroscience and molecular biology. I don't know if I should do them. Will it be a waste of time in the long run? I also thought of doing research into retinal dystrophies but that is probably a little crazy although I think I'd be pretty passionate about it. Who knows? I haven't told many people about my newly discovered illness so I haven't been able to get proper advice from them because they don't know the full story hence why I'm posting here today.
Sorry if this post seems convoluted and lacks cohesion or pertinent information. I guess that sums up the confusion I feel at the moment. I'm just looking for people's two cents on this as (I hope) some of you guys may have been in similar situations.
jrs12 5 points 5y ago
If you have hearing loss, learn braille! Braille is even more important if auditory is not a reliable way to get information. Try not to limit yourself in what you think you can do. People who don't even know you will do that for you enough. I would say reach for your dreams. Who knows when you will lose all of your vision. Work hard to get yourself in a place where you are versatile with what you can do in your job. Build relationships so that people trust your skills and what you can do. That way when you lose more vision they are more willing to accommodate because they have a connection with you. I see no reason why you can't be a scientist still. As Randy Pausch said, the walls are there to stop other people.
Immrmeeseeks125 [OP] 2 points 5y ago
Thanks for the motivational comment. My hearing is still pretty good and shows no signs of getting worse although braille would definitely be quite useful.
Zach_of_Spades 3 points 5y ago
Don't immediately put aside your ambitions due to your vision loss. Learn Braille and orientation and mobility skills early so you have the skills by the time they become necessary.
You are going to be ok. It is possible to be an educated and well adjusted blind person. I myself was born blind and would be happy to talk or point you in the direction of helpful resources you may need.
You are going to be ok. It is possible to be an educated and well adjusted blind person. I myself was born blind and would be happy to talk or point you in the direction of helpful resources you may need.
SWaspMale 3 points 5y ago
Meh, I am thinking if Hawking can be scientist, you can too. I knew a guy with r. pigmentosa (I think) who was an engineer. He seemed to get increasing accomodations as his condition progressed, though I suppose he may be retired by now.
Immrmeeseeks125 [OP] 1 points 5y ago
I think Hawking is on a completely different level of intelligence compared to most scientists nevermind me. Accommodations are something I have no ideas about.
SWaspMale 1 points 5y ago
Well the engineer got / had a rig which would enlarge print so he could read it. I think it was like a TV and camera or something. Seems like he had other things in his office too, but I do not remember all of it.
yu-sir 2 points 5y ago
I can't speak much to advice, but I just have to say I am so completely moved and comforted to have found this post. I was just told a couple of days ago that due to my extreme near-sightedness, I have a chance of retinal tears or holes and that I've been doing poorly in my visual field tests and that I may get glaucoma and I anticipate eventually becoming blind. I am currently applying for a Master's and plan to eventually do a PhD in Neuroscience and one of the first thoughts was whether I could ever be a researcher and whether all this effort was then worth it. I decided to search for any blind scientists and Peter Torpey came up. Here's one link about him: http://www.afb.org/info/mentees/scientist-mentor-mentee-profile/45
I was also shocked to find out that there are blind photographers, one of them being Pete Eckert. It really does take creativity to overcome what seems at first to be a limitation.
I, too, considered switching to vision research, particularly working towards retinal regeneration using stem cells, but as Amonwilde pointed out, it's best to pursue our dreams.
On a slightly different note, does anyone have suggestions on where to start learning Braille? I'm not too familiar with this, do libraries commonly have braille books?
I was also shocked to find out that there are blind photographers, one of them being Pete Eckert. It really does take creativity to overcome what seems at first to be a limitation.
I, too, considered switching to vision research, particularly working towards retinal regeneration using stem cells, but as Amonwilde pointed out, it's best to pursue our dreams.
On a slightly different note, does anyone have suggestions on where to start learning Braille? I'm not too familiar with this, do libraries commonly have braille books?
Immrmeeseeks125 [OP] 1 points 5y ago
It's great to hear from someone like you aiming to become a scientist. It's so inspiring to me that you are brave enough to do it despite the uncertainties. I didn't know about Peter Torpey. I'll definitely read more into them and other scientists who have manage to strive in this field despite their vision loss.
I don't know about Braille or how to go about learning but I'd guess that your local library would have some Braille books. The best thing to do is to make a post in this subreddit and ask it's members what's the best recourse on learning it. It's definitely something I'll have to do and learn.
I don't know about Braille or how to go about learning but I'd guess that your local library would have some Braille books. The best thing to do is to make a post in this subreddit and ask it's members what's the best recourse on learning it. It's definitely something I'll have to do and learn.
yu-sir 1 points 5y ago
Sorry for the late reply, I haven't checked reddit in a while! I hope everything has been going well and that you're well on your way to pursuing your dreams.
And yea, I'll definitely check out the library and ask around in this subreddit. Thanks!
And yea, I'll definitely check out the library and ask around in this subreddit. Thanks!
ladymunch 2 points 5y ago
Some really good comments from other posters here: don't put yourself in a box. As someone else said, others will do that for you.
I was born blind so can only give general advice and info. Coping strategies may be a bit different for you than they would be for me.
Try to get yourself prepared for a possible future with low vision: daily living skills, low vision aids such as magnifiers etc, ways of getting around and getting where you want to go, physically and emotionally. Braille is a really good skill to have.
Try to be imaginative as much as possible in the ways you do things.
The saying "prepare for the werst, hope for the best" comes to mind. While you are making yourself ready for your possible future, try to be positive, keep what YOU want to do in mind and push for it despite your vision issues.
I really hope this makes sense.
It does sound like you may have Usher syndrome. Talk to others with the condition and build yourself a robust support network.
Good luck.
I was born blind so can only give general advice and info. Coping strategies may be a bit different for you than they would be for me.
Try to get yourself prepared for a possible future with low vision: daily living skills, low vision aids such as magnifiers etc, ways of getting around and getting where you want to go, physically and emotionally. Braille is a really good skill to have.
Try to be imaginative as much as possible in the ways you do things.
The saying "prepare for the werst, hope for the best" comes to mind. While you are making yourself ready for your possible future, try to be positive, keep what YOU want to do in mind and push for it despite your vision issues.
I really hope this makes sense.
It does sound like you may have Usher syndrome. Talk to others with the condition and build yourself a robust support network.
Good luck.
Amonwilde 2 points 5y ago
Do your Master's program and live your life. You don't know your prognosis and it's too early to start acknowledging entirely theoretical future limitations and building your life around them. If you want to study the retina and retinal diseases, great! Then do that. But only if you find that area inherently interesting. If you go into that area because you're looking for a cure, that's a bad idea. Study what interests you most as a scientist, not as a person with retinal disease.
Do careful reading on therapies for your disease. For many retinal diseases, vitamin A, omega 3, and other therapies have been shown to slow progression, but make sure you do your research and consult with your doctor before starting.
There's no reason a blind person can't be a scientist, and if you get higher in your career (to the point where you're writing grants and papers more than looking at stuff through a microscope or the equivelant), it may not even slow you down. Invest in yourself, become the programmer or the stats person or the excellent writer or the agreeable one that goes on Science Friday. As you lose sight, adapt. But don't start giving up on things before you even encounter any obstacles. And don't ruin your present and your future by letting your apprehensions get the better of you.
Do careful reading on therapies for your disease. For many retinal diseases, vitamin A, omega 3, and other therapies have been shown to slow progression, but make sure you do your research and consult with your doctor before starting.
There's no reason a blind person can't be a scientist, and if you get higher in your career (to the point where you're writing grants and papers more than looking at stuff through a microscope or the equivelant), it may not even slow you down. Invest in yourself, become the programmer or the stats person or the excellent writer or the agreeable one that goes on Science Friday. As you lose sight, adapt. But don't start giving up on things before you even encounter any obstacles. And don't ruin your present and your future by letting your apprehensions get the better of you.
Immrmeeseeks125 [OP] 1 points 5y ago
I have been taking vitamin A, Omega 3 and Lutein for a little over a month and a half. I haven't really noticed a difference although I didn't notice my eyesight was going before I was told it was. I know it only works for very few people. I will do more eye tests in a few months so I'll be interested to see the progression (hopefully it's not too bad). Do you have any sources/information on different therapies for retinal diseases?
There is definitely different avenues I could explore. I'll have to look into it.
There is definitely different avenues I could explore. I'll have to look into it.
Amonwilde 1 points 5y ago
You're not going to notice the difference. It's supposed to slow the progression, not fix damage already done.
Immrmeeseeks125 [OP] 1 points 5y ago
Yeah, that's probably true. The research in this area is pretty weak but there has been some success stories with it. A person with the same disease as me (or the one I think I have) noticed some of her rod cells manged to repair themselves after taking supplements although there was no way of telling if the supplements was the cause of it or if it was the body correcting it the damage done by the disease. Again it's just a single testimonial on the use of the aforementioned supplements and she also goes on to say that she knows people with the same disease where the supplements had no effect. I'm hopeful that it will work to some degree although I'm trying to be realistic in that it will most likely not do anything. I'm cautiously optimistic :)
Amonwilde 1 points 5y ago
Good luck, I hope it makes a difference. Not that you'll know... :)
kissitallgoodbye 2 points 5y ago
You can still research, devise theories and experiments if you can't see, so I don't think science is out. Plus it'll be good to be in the field, having contacts and being first to know about advancements for your condition.
Chin up! You got this.
Chin up! You got this.
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