Blind and Visually Impaired Community
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Just got reddit. Stargardt rant? (self.Blind)
submitted by gabby_skii
Hello
I feel somewhat stupid about posting this. Shit like this normally never leaves my notebooks or my internal rants. Friends and family could find this if they went looking for it, but I honestly don’t care.
I’m 18 and received a stargardt disease (a type of macular dystrophy) diagnosis in June of last year. One of the first things a specialist told me that there’d be no overnight changes and that I’ll live a pretty comfortable life. So much of that is true, in that while I am decently comfortable (aside from uni stress and the occasional mental breakdowns) my symptoms were more rapid and aggressive than expected. I went from seeing normally to low vision in the span of a few moths. I honestly have no doubt I’ll be pronounced legally blind by the end of the year. As deep as I could go about how shitty that is to realise, my experience is probably no different to anyone else’s on this forum. I’m so sorry. As a good friend put it to me, “it’s ok for life to suck sometimes”, I think we can easily fall into this idea that we need to pick ourselves back up and display resilience in the face of adversity. This can take as much time as you need. Grovel. Cry. Be angry. It’s not your fault and it’s ok to be that way. It’s better to let that out now than to skip around acting like it’s all sunshine and rainbows. I’m trying to allow myself this time, and I wish nothing more than for the person experiencing this along with me to allow themselves that too.
The biggest upset this brought about was how it forces me to call into question my future. My finial years of school (year 12 VCE/HSC for any fellow Australians) made me realise my passion for academia. I adore learning and I never want to stop asking questions. I want to travel and conduct research one day. I thank god I’m able to attend uni and study what it is I really love which is psychology and sociology. Sharing the typical immigrant experience hard work is a priority. I’m not opposed to it, in fact if I could relay one thing to my future self that I hope I never stop working, being active in my community, no matter what it is.
I, like so many other stargardt patients, have no fucking idea where this is headed. We read and hear so much about treatments, these groundbreaking injections and lotions and potions and whatnot. It’s stressful. It’s tiring. It’s upsetting, and that’s ok. Not sure if this is the material anyone’s looking for, but in a way these are the words I’d wanna hear when it’s late and I’m crying about my eyes again. Maybe I’m just writing this to feel less alone.
Feel free to message me. I’ve just made my acc so no promises I’ll be able to reply quickly. If you see any spelling or grammar mistakes, cut me some slack I’m fucking vision impaired.
I feel somewhat stupid about posting this. Shit like this normally never leaves my notebooks or my internal rants. Friends and family could find this if they went looking for it, but I honestly don’t care.
I’m 18 and received a stargardt disease (a type of macular dystrophy) diagnosis in June of last year. One of the first things a specialist told me that there’d be no overnight changes and that I’ll live a pretty comfortable life. So much of that is true, in that while I am decently comfortable (aside from uni stress and the occasional mental breakdowns) my symptoms were more rapid and aggressive than expected. I went from seeing normally to low vision in the span of a few moths. I honestly have no doubt I’ll be pronounced legally blind by the end of the year. As deep as I could go about how shitty that is to realise, my experience is probably no different to anyone else’s on this forum. I’m so sorry. As a good friend put it to me, “it’s ok for life to suck sometimes”, I think we can easily fall into this idea that we need to pick ourselves back up and display resilience in the face of adversity. This can take as much time as you need. Grovel. Cry. Be angry. It’s not your fault and it’s ok to be that way. It’s better to let that out now than to skip around acting like it’s all sunshine and rainbows. I’m trying to allow myself this time, and I wish nothing more than for the person experiencing this along with me to allow themselves that too.
The biggest upset this brought about was how it forces me to call into question my future. My finial years of school (year 12 VCE/HSC for any fellow Australians) made me realise my passion for academia. I adore learning and I never want to stop asking questions. I want to travel and conduct research one day. I thank god I’m able to attend uni and study what it is I really love which is psychology and sociology. Sharing the typical immigrant experience hard work is a priority. I’m not opposed to it, in fact if I could relay one thing to my future self that I hope I never stop working, being active in my community, no matter what it is.
I, like so many other stargardt patients, have no fucking idea where this is headed. We read and hear so much about treatments, these groundbreaking injections and lotions and potions and whatnot. It’s stressful. It’s tiring. It’s upsetting, and that’s ok. Not sure if this is the material anyone’s looking for, but in a way these are the words I’d wanna hear when it’s late and I’m crying about my eyes again. Maybe I’m just writing this to feel less alone.
Feel free to message me. I’ve just made my acc so no promises I’ll be able to reply quickly. If you see any spelling or grammar mistakes, cut me some slack I’m fucking vision impaired.
DHamlinMusic 6 points 1y ago
Welcome, yeah it sucks, lost my sight just over 2 years ago from random bullshit home invasion so did not have the benefit of knowing in advanced, which both sucks and is a blessing cause you have time to learn things you'll want when/if you get to where I am at vision wise. Don’t worry about spelling lol, as long as it is coherant you're good.
IF you use Discord the sub has a server that can be joined from the link in the sidebar. We’re all friendly here and don’t bite, much, so feel free to ask questtions, or rant, etc.
IF you use Discord the sub has a server that can be joined from the link in the sidebar. We’re all friendly here and don’t bite, much, so feel free to ask questtions, or rant, etc.
gabby_skii [OP] 2 points 1y ago
I’ll look into that, sounds really helpful. Wow I can’t believe everyone’s being so welcoming. Cheers for taking the time to listen to my shitty little rant
JaymeJammer 5 points 1y ago
Welcome, and for what it's worth, I think you're responding admirably.
There is no denying the enormity of your change, and your positive attitude is your best ally going forward.
As for your aspirations and dreams, I'd encourage you to hold on tight, and you might find some happy surprises along the way. I've worked in higher education as an accessibility specialist for over 20 years and I have seen plenty of examples of people who are completely blind happily doing all the things you describe.
Good luck, and I will see you online!
There is no denying the enormity of your change, and your positive attitude is your best ally going forward.
As for your aspirations and dreams, I'd encourage you to hold on tight, and you might find some happy surprises along the way. I've worked in higher education as an accessibility specialist for over 20 years and I have seen plenty of examples of people who are completely blind happily doing all the things you describe.
Good luck, and I will see you online!
gabby_skii [OP] 2 points 1y ago
Still crying tears of joy. Thank you so much!!!
[deleted] 3 points 1y ago
[deleted]
Arqeria 3 points 1y ago
Hey. I've been totally blind my entire life so I have no idea what losing sight slowly over a long period feels like, but I'm sure you'll find ways to deal with it and keep on going. This sub and the wider blind community is full of people like you, so I have no doubt that you'll be able to find the support you need. Good luck.
Tarnagona 2 points 1y ago
Hey, I’m mostly blind, and got my PhD. I personally know at least one more blind person getting their PhD. As part of my job, I had the opportunity to view a bunch of scholarship applications from students with vision loss, and that included a couple dozen going to grad school for various things. Suffice to say, you can absolutely pursue graduate studies and academia as someone who is blind.
I don’t work in my field, but not because of my eyes. That’s because there’s way more PhDs than job opportunities for academics, so you have to be *really good* and *really proactive* with things like conferences, and submitting papers and filling out your CV in a way I wasn’t. I wouldn’t be working in my field if I was sighted, either. Which isn’t to say I regret getting my doctorate—I’m glad I did it—just that the academic job market is hard for everyone. (That’s probably different if you’re getting your psyche doctorate to become a therapist, though; no idea what the market for therapists is like)
I don’t work in my field, but not because of my eyes. That’s because there’s way more PhDs than job opportunities for academics, so you have to be *really good* and *really proactive* with things like conferences, and submitting papers and filling out your CV in a way I wasn’t. I wouldn’t be working in my field if I was sighted, either. Which isn’t to say I regret getting my doctorate—I’m glad I did it—just that the academic job market is hard for everyone. (That’s probably different if you’re getting your psyche doctorate to become a therapist, though; no idea what the market for therapists is like)
gabby_skii [OP] 2 points 1y ago
Neither do I but I’ll figure that out as I go hahaha! Any advice for me studying with low vision?
TechnicalPragmatist 1 points 1y ago
Learn braille and assistive technology. Learn to work hard and sometimes it will require double or triple the time especially if you want to do steller work. Get someone to help take your notes and learn to work with screem readers. If you can learn braille that would be great but if not that’s okay. It will be really helpful in the math and sciences department. There are tactile graphics so get those if you are doing math or science. Ask your teachers if you can record their lectures. You can’t share that with anyone though. Ask for and use double time for test. Use assistive tech to do this. Sit in the front and ask a lot of questions. Also remind the professor if they write on the board and don’t verbalize. If they have handouts ask them to e-mail it to you put it on a flash drive or bring the copy to the disabled students office., but hopefully you can handle it with your teachers. All your documents and textbook can be in electronic format. Have your books converted in to .doc and don’t let them just give you publisher pdfs. Some are good and some aren’t. Bring your books to the disability office early as early as possible but at least 2 or. 3 weeks before the school year starts. Don’t expect it to be done if you bring it the first day of classes. If you need research papers converted have them convert that. Advocate. For yourself tell them what you need but don’t make excuses for yourself. Know what you want and set some goals and verbalize these. Don’t use blindness as an excuse. Use it as a motivation to work hard.
SoapyRiley 2 points 1y ago
“No fucking idea where this is headed”
Oof, I felt that. It’s probably my biggest frustration with my glaucoma. Will I only lose vision in my left eye? Or will my right one eventually go too? And how long do I have?! I have no idea. I would love to know how much adaptation will be needed on my part so I can plan ahead.
Oof, I felt that. It’s probably my biggest frustration with my glaucoma. Will I only lose vision in my left eye? Or will my right one eventually go too? And how long do I have?! I have no idea. I would love to know how much adaptation will be needed on my part so I can plan ahead.
gabby_skii [OP] 3 points 1y ago
I know exactly how you feel. Prepping for the worst case scenario can make you even more anxious, I know it does for me, but you wanna be kind to yourself and allow yourself the assistance you need. (I know I need to zoom in like crazy, touchscreen laptops are honestly really good). We’re in this together haha.
CosmicBunny97 2 points 1y ago
Hey there. I don’t have Stargardt’s but I hope I can give you some hope. You can still do a PhD and be in academia. I had a mentor who is blind and did her PhD. You can still get involved with the community - I would get in contact with Vision Australia for volunteering as a start, but I’ve been in youth leadership roles and there hasn’t been any issues, really. All in all, take as much time as you need. I’m also happy if you want to chat or vent, as I’m also in Australia.
gabby_skii [OP] 1 points 1y ago
Thank you, and yes I am in contact with Vision Australia :)
I quite honestly feel embarrassed at my rush to thinking my career will never happen because of this. In truth I know nothing of the vision impaired community nor anything about the technology and opinions available. Regardless, I’m excited to learn
I quite honestly feel embarrassed at my rush to thinking my career will never happen because of this. In truth I know nothing of the vision impaired community nor anything about the technology and opinions available. Regardless, I’m excited to learn
CosmicBunny97 1 points 1y ago
That’s good to hear that you’re in contact. I would also look into VA’s Quality Living Programs as they’ll be able to give you emotional support and others to talk to. I would also recommend getting in contact with Guide Dogs for services too. They may also have the Leisure and Lifestyle programs depending on where you are and that’ll be a good start to get involved with the vision impaired community. As for uni, get in touch with the disability resource centre as soon as possible. I apologise for my rambling, I just hope I can help in some way :)
MacaroniGlutenFree 2 points 1y ago
Be strong and keep learning! Psychology (therapy) would be a great avenue! There are blind therapists. Technology and administrative assistants can help with the bureaucratic aspects of the job (keeping files on patients) while the conversation aspect is the most important for a therapist.
Here's an example of a blind psychotherapist who has the same disease as my daughter (BBS - RP).
$1
Here's an example of a blind psychotherapist who has the same disease as my daughter (BBS - RP).
$1
gabby_skii [OP] 3 points 1y ago
I’ve just let out the ugliest cry. Thank you so much. You have absolutely no idea how much this means to me. ♥️
Ok-Communication2195 1 points 1y ago
That's actually the path I am going and I got stargadt's disease as well! Just starting out with my final year of my bachelor's. I really enjoy uni and I might even want to go into research (little uncertain about all the reading). But I'll always work towards therapy as it just seems like such a wonderful job to do in general and then it's also something I'll be able to practise forever no matter how bad my eyes get :)
ahawk214 1 points 10m ago
I just came across this post. I have Stargardts and a phd. In grad school I used an Echo Smart pen and using a mini camcorder with 70x zoom attached to my tablet let me 'livestream' the whiteboard to my tablet. Both helped me a lot. This was like 8 years ago now so there is probably better tech out there but thought I'd share in case it is helpful.
TechnicalPragmatist 1 points 1y ago
At some point acceptance is good. Reality awaits and we must face it. The realities of being blind isn’t honestly as bad as you’d think it would be. Living a full and fulfilled life is possible.
I am a stem major here and while I am turning out pages and pages of math reading and typing this all at the same time.
I have been to 6 different states and traveled it alone as a blind single woman for 2 weeks and didn’t just stay in my hotel huddled up and frightened. I went out there and did a lot and faced it. I travel all around my county and city or did extensively before the pandemic. I’ve been out there yelping before and food hunting all by myself.
Being blind isn’t the end of life. Nothing to cry about or be sad about. Be positive and look forward to the future. It doesn’t stop you from living life and it should not. It shouldn’t be an excuse. Let it just be a reality you have to live with but one you can hone in to a strength.
Don’t let this effect your future and don’t let it stop you. Learn to adjust and adapt. Learn the independent, living skills academic skills, blindness skills, the assistive technology, and mobility skills and you should be great!
I would say don’t hold your breath about treatments. They’ve been talking it about for years. When it comes available it does, but for now it gives false hopes we need to be realistic about it here.
I don’t believe you can use your blindness though to justify grammer or spelling mistakes though.
I am a stem major here and while I am turning out pages and pages of math reading and typing this all at the same time.
I have been to 6 different states and traveled it alone as a blind single woman for 2 weeks and didn’t just stay in my hotel huddled up and frightened. I went out there and did a lot and faced it. I travel all around my county and city or did extensively before the pandemic. I’ve been out there yelping before and food hunting all by myself.
Being blind isn’t the end of life. Nothing to cry about or be sad about. Be positive and look forward to the future. It doesn’t stop you from living life and it should not. It shouldn’t be an excuse. Let it just be a reality you have to live with but one you can hone in to a strength.
Don’t let this effect your future and don’t let it stop you. Learn to adjust and adapt. Learn the independent, living skills academic skills, blindness skills, the assistive technology, and mobility skills and you should be great!
I would say don’t hold your breath about treatments. They’ve been talking it about for years. When it comes available it does, but for now it gives false hopes we need to be realistic about it here.
I don’t believe you can use your blindness though to justify grammer or spelling mistakes though.
Snoo_85465 1 points 1y ago
Hi! I majored in sociology. Sorry you’re going through this, but welcome. I am new too. I don’t have stargart’s but I had a retinal detachment and I’m low vision now at 30.
synthpopolis 1 points 1y ago
I’m glad you shared that here. I have a different form of vision loss and I am already very far along in my progression, with only a little bit of sighte remaining, but I’ve been losing it over the course of decades, not years, so I feel like I’ve had ample adjustment time along the way. That said, now that I’m in the final throes of this thing I am experiencing more grief than I ever did before, missing the visual experiences I was able to enjoy. I’m not trying to compare our experiences, and I imagine what you are going through is much more traumatic and difficult, but just wanted to offer some support and solidarity.
gabby_skii [OP] 2 points 1y ago
There’s a lot of challenges both internally and externally. If I’m being honest I’m still getting used to the “vision impaired” label. I still cry when I say it (yep, I’ve got a long way to go). Thank you, I really appreciate this ♥️
notoriousbsr 1 points 1y ago
I'm writing on my husband's account because I'm not on that much but if you write he'll tell me.
I've had Stargardt's 30+ years now. It's hard. BUT... I've gotten to travel, I still spend a lot of time learning and studying academia, my degree is in the psychology realm. We sound very similar.
I found that I love at - I'm no good but I love the colors and shapes - sure I don't see them as well as I used to but they're still colors. My vision is less than 20/800 - but I still hike mountains and climb peaks with my husband. I run Spartan and Tough Mudder Races (there's an article somewhere out there from Spartan on be being the first legally blind to complete the course. I do CrossFit 4-5 times a week.
There will be many challenges but life is still so amazing even with the decreasing vision. Message me if you ever need.
I've had Stargardt's 30+ years now. It's hard. BUT... I've gotten to travel, I still spend a lot of time learning and studying academia, my degree is in the psychology realm. We sound very similar.
I found that I love at - I'm no good but I love the colors and shapes - sure I don't see them as well as I used to but they're still colors. My vision is less than 20/800 - but I still hike mountains and climb peaks with my husband. I run Spartan and Tough Mudder Races (there's an article somewhere out there from Spartan on be being the first legally blind to complete the course. I do CrossFit 4-5 times a week.
There will be many challenges but life is still so amazing even with the decreasing vision. Message me if you ever need.
gabby_skii [OP] 1 points 1y ago
Thank you. You are quite honestly living my dream. I’d love to get in contact with you, you sound wonderful ♥️
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