Blind and Visually Impaired Community
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An Introduction (self.Blind)
submitted by k00l_m00se
Hi everybody, I'm Jack, a recently legally blind 16 year old. In November 2015, I developed an extreme case of a rare, incurable neurological condition called visual snow that made me legally blind. I'm a bassoonist, and I read music using a device my school district bought for me called the Limelighter. I also walk with a white cane to help me get around. I've also started learning Unified English Braille. I'm about 3/4 of the way through learning the contractions, but I am having some difficulty reading it, which is incredibly frustrating, as reading is one of my hobbies. My school has been incredibly accommodating of my disability, and has helped me through this whole process. In the beginning, this scared me and made me incredibly depressed. But I accept it now, and I hardly even think about it anymore. It is annoying to have to wear tinted sunglasses all the time because I'm very sensitive to light. It's also irritating being stared at, talked to like I'm less of a person and not being able to read menus to myself at restaurants. My school gave me a Ruby magnifier to use, but it's inconvenient to use. But those are all very minor annoyances. I love having a shorter line through security at the airport and the relative freedom I'm given at school. I do miss video games, but I'm too busy with band and school now anyways to have time for them. For college, I'll probably get a guide dog to help me feel safe and confident in a new town. Anyways, sorry for the essay, just figured I'd introduce myself to y'all
Fange_Strellow 2 points 7y ago
A guide dog will also totally make you pretty popular in your class!
k00l_m00se [OP] 1 points 7y ago
Haha, I can just imagine the swarm of girls I'd attract with one. Doubt my girlfriend would appreciate that, haha. I don't think I really need one right now though. I definitely will when I head off to college though
Fange_Strellow 1 points 7y ago
I think that's a good idea! I've recently went back to school, and have been working with a guide dog for a year now. Travelling campus with my dog is an incredibly empowering experience.
claudettemonet 1 points 7y ago
Oh no! Visual snow is a thing. I just figured it was a part of retinitis pigmentosa generally. I feel like I have always had it.... I just call it static, visual static. Dang nab it. Oh well. Mine is like a halo around my central vision. I can see things in the far periphery and in the center. In the static things are static-y. Whatcha gunna do?
Why is it after all the doctors and all the testing not one doctor actually asked me to describe my vision to them? You would think someone would ask. Alas.
You seem like a nice kid. The whole "less of a person" seems weirdly pervasive in blind people... well actually those who went blind or are struggling with vision loss. When I went to open a case at voc rehab, the lady there talked about it. I was a bit caught off gaurd. I hadn't brought it up, so her bringing it up was weird to me. I read some studies afterward and apparently a loss of self worth is a pretty common thing in people who have lost their vision and are having to adapt to being without sight. Something for me to look forward to [sarcastic winky face]. Lulz
You are farther along the journey than I, so I have no advice or wisdom for you. Perhaps when I get there you will have some advice and wisdom for me. In any case I'm pulling for you.
Also, no apologies for essays. I love essays.
So did you go blind all of a sudden? November 2015 to now, just normal to blind? That would be tumultuous.
Why is it after all the doctors and all the testing not one doctor actually asked me to describe my vision to them? You would think someone would ask. Alas.
You seem like a nice kid. The whole "less of a person" seems weirdly pervasive in blind people... well actually those who went blind or are struggling with vision loss. When I went to open a case at voc rehab, the lady there talked about it. I was a bit caught off gaurd. I hadn't brought it up, so her bringing it up was weird to me. I read some studies afterward and apparently a loss of self worth is a pretty common thing in people who have lost their vision and are having to adapt to being without sight. Something for me to look forward to [sarcastic winky face]. Lulz
You are farther along the journey than I, so I have no advice or wisdom for you. Perhaps when I get there you will have some advice and wisdom for me. In any case I'm pulling for you.
Also, no apologies for essays. I love essays.
So did you go blind all of a sudden? November 2015 to now, just normal to blind? That would be tumultuous.
JackEsq 1 points 7y ago
Welcome. My wife and I are both musicians. I play trumpet and she plays oboe and English horn. You double reeds are an odd bunch. Do you actually play bassoon in Marching Band? That has to be rough, I'm hard pressed to think of a more difficult instrument to march with.
My daughter who has LCA is still young (only 1) but we would certainly like her to play an instrument when she is older. I'm curious if you are going to learn Braille music or if the Limelighter will suit your needs?
My daughter who has LCA is still young (only 1) but we would certainly like her to play an instrument when she is older. I'm curious if you are going to learn Braille music or if the Limelighter will suit your needs?
k00l_m00se [OP] 2 points 7y ago
I'm in pit, sorry for not clarifying. The Limelighter works very, very well for me. My vision is around 20/400, 20/800 and the second largest magnification level is enough for me. It's very heavy and the stock pedals (you press them to advance the music) are absolutely horrible and unreliable. If you order transcribing pedals it works like a charm. Because I've lost my sight at an older age, I really struggle with reading Braille, but I'm still trying anyways. Braille music may be a backup option in the future. My dream is to create a better system that allows players that have both hands busy able to read it and play at the same time, and to make it easier for the visually impaired to be musicians. I was out of band for about 7 months and it was the most miserable, depressing time of my life. Luckily if you start your daughter early, she shouldn't have much difficulty, especially with musical parents
JackEsq 1 points 7y ago
I can certainly understand the difficult learning Braille at your age. Is your vision likely to get worse or just remain low-vision?
Do you have difficulty following the Conductor or do you just listen to the rest of the band?
Forgot to ask before, what music are you playing now and what is your favorite piece?
Do you have difficulty following the Conductor or do you just listen to the rest of the band?
Forgot to ask before, what music are you playing now and what is your favorite piece?
k00l_m00se [OP] 1 points 7y ago
They don't really know. Visual snow isn't supposed to be this severe. I doubt I'll lose all of my sight though. I've actually been working on getting the tempo up and cleaning my part in a practice room for the last few days, so I'm not sure what it'll be like to play with the full band. I'll have to go by ear for the tempo. Our show is based on Jai Ete Au Bal and Polovetsian dance this year. We'll be headed up to Indianapolis later this year for grand nats. I'm a huge Hindemith fan. My sister's wind ensemble played Symphonic Metamorphoses in 2014, and that piece really got me excited about band and made me a music lover. So probably Symphonic Metamorphoses for wind band. What's your favorite and what are you playing right now?
Edit: For a proper orchestra, Shostakovich's 5th and 7th symphonies and the Rite of Spring
Edit: For a proper orchestra, Shostakovich's 5th and 7th symphonies and the Rite of Spring
JackEsq 1 points 7y ago
I don't play anymore unfortunately (kids take up too much time). My wife still plays in a semi-professional orchestra though and they just played Hindemeith's *When Lilacs Last in the Dooryard Bloom'd*.
I certainly can get behind Shostakovich (I like 5, 8 and 11) and Rite of Spring. Favorite composer is Mahler and his 9th is just transcendent.
I certainly can get behind Shostakovich (I like 5, 8 and 11) and Rite of Spring. Favorite composer is Mahler and his 9th is just transcendent.
ChupacabraGatherer 1 points 7y ago
Hey man. Welcome to the sub. I'm glad to hear that you're moving forward with life and not letting your lack of vision impair the rest of your life as well.
Keep up the good work bro.
Keep up the good work bro.
k00l_m00se [OP] 1 points 7y ago
Thanks dude, I'm just glad I've found a welcoming community of folks with similar lives to me. I love them, but the visual snow community can be a little toxic and obsessive over cures and causes. From what I've read, this sub is about moving on and living with what you have, which I'm all about. Y'all have been incredibly welcoming and kind to me
IHaveAFunnyName 1 points 7y ago
You sound like such a nice person and very well adjusted about your situation! My son is legally blind from brain bleeds caused by premature birth. He has optic nerve atrophy and cortical visual impairment.
Will you get a guide dog?
Music is such a joy. Have fun in band!
Will you get a guide dog?
Music is such a joy. Have fun in band!
k00l_m00se [OP] 3 points 7y ago
I don't really think I need one now. I'm only in high school, and I always go places with my girlfriend, family or friends. When I go off to college in about 3 years, I'll get one. It's gonna be horribly unpleasant and dangerous being in a new city without a guide. Music has been my rock throughout this, and has kept me sane. I made sure to set myself down everyday for at least an hour to practice. It was hard at first, but I've made huge improvements to my abilities. When something bad like this happens, you don't have much of a choice when it comes to adjustment. You let the depression and anxiety swallow you, or you adjust. I went with the latter
IHaveAFunnyName 1 points 7y ago
That's such a good view to take! I'm still learning about canes vs dogs so thanks for responding. I hope your eventual move goes well!
k00l_m00se [OP] 2 points 7y ago
Thank you! I'd recommend getting him a cane if he doesn't already have one. It's been a huge boost to my confidence being able to move independently without worrying about tripping or running into something. I went about 4 months without a cane, and I became a recluse because I was scared to go places, because I was worried about accidentally hurting myself. It's made me feel so much safer having a cane
fastfinge 1 points 7y ago
Hey, welcome to the sub! Audio games are a thing, if that interests you; not all are high quality, but there are a few gems. Glad you're doing mostly well in adjusting.
As for reading, have you tried finding out if you have a library for the blind in your country? In the US it's the Library of Congress, in canada it's CELA, and I don't know about anywhere else. But they usually have not only Braille books, but a huge selection of audio books, that you can often just download straight to your computer and listen to. You should also find out about bookshare. Oh, and Kindle has a text to speech feature, as well. I also love reading, and these days, I'm never ever short of books!
As for reading, have you tried finding out if you have a library for the blind in your country? In the US it's the Library of Congress, in canada it's CELA, and I don't know about anywhere else. But they usually have not only Braille books, but a huge selection of audio books, that you can often just download straight to your computer and listen to. You should also find out about bookshare. Oh, and Kindle has a text to speech feature, as well. I also love reading, and these days, I'm never ever short of books!
k00l_m00se [OP] 2 points 7y ago
My VI teacher signed me up for book share actually! I really struggle with enjoying audiobooks and enjoying them unfortunately. I could probably do audio games, but I'm incredibly busy these days. Marching band has me busy 6 days a week from 9 to 9. Braille books are a struggle for me too, but I enjoy them. I'm borderline illiterate when it comes to reading now. I can read about 5-10 lines before I go numb. It's also a bit odd for me because they're all in EBA, but I've only learned UEB. I can figure out the meaning, but some of the contractions are super ambiguous. My school district will emboss any book in our library system to Braille, which is nice. My city's downtown library stocks some Braille books I think. I was not aware that the Library of Congress stocked Braille books, I'll definitely have to look into that some more! Thanks for the advice!
fastfinge 1 points 7y ago
You could also look into getting a braille display. That way, you could also read bookshare and/or Kindle books in Braille.
k00l_m00se [OP] 2 points 7y ago
I think I'm eligible to get one. We use Braillenote Apexes in my district, and I've done work with them. I really like them. They don't have any to spare, but I'm pretty sure my teacher said they plan on ordering more soon. I think they'll be very useful for school assignments. I hate using the JAWS software
fastfinge 1 points 7y ago
Have you looked at $1.
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