I'm Blind, This is What I REALLY See!
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- เผยแพร่เมื่อ 27 ธ.ค. 2015
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Thanks for watching this update on my Retinitis Pigmentosa! And I hope it was interesting learning about what I can and can't see.
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I have a friend who has been blind since birth. She learned how to “look” at people when she is talking to them. She also uses a lot of technology. She works at NASA Glenn Research Center and uses her computer every day. She has adaptive software. My friend travels by herself by bus, train and plane. She is amazing. Sometimes I forget she is blind and might say, “Hey did you see that?” She is thrilled when I do that because I am thinking of her like anyone else, not a blind person. Just discovered you Molly. Love your videos. Keep living life on your own terms.
Cindy Johnson Wow, that's so cool.
I find Molly's physical mannerisms interesting. I guess she still remembers that from before being blind.
@@conn1e I don't think people move their limbs around so that people can see them expressing (it's just a side effect). I think it's just a physical reflex to help you express yourself.
By herself? that’s really brave. That reminds me of this One time, when I was in New York City, I was on the subway, and there was a blind lady (she was reading a Braille book). She was alone, and she asked the people in the car if they were going wherever she wanted to go. One kind man said that he was going that way, and helped the lady off of the train. I was 10 when this happened. Looking back at it know, I realize how brave that lady had to be to put complete trust in a stranger. Blind people (and all with disabilities) are brave are brave when they don’t let their differences get in the way!
Wow, that’s amazing!1! Good for her🥺💕
11:40 is when she talks about what she sees.
nadia kay thank you xd
nadia kay thank u so much😂😂♥️
nadia kay MVP
I was looking for this comment
princemaktho same
Next time someone says “you don’t look blind”, just say “well, you don’t look stupid - yet you are”.
This should be the top comment
Except she can't tell what they look like-
That's good, but I don't think Molly would say that because she's so nice!
Yes sista PREACH
Insulting someone due to ignorance is not an ideal world. Or situation... It just makes things worse.
How is this women almost completely blind and still has a better fashion taste then me and everyone I know. Btw the way she says the word sorry. I love Canada.
Lol I just went to the comments to see if anyone else herd her Canadian "sorry" accent. So cute
“Soorry”
she still has partial vision, also she wasnt born blind so she has maintained attributes and habits of non-blind people
Yes about the fashion sense, and that "soorry" is so cute.
With lots of training plus Mollys fortune, I'm sure you would have equally good fashion taste
I am learning so much of blindness thanks to you. First assumption of being blind that it's pitch black. Which is not true of course.
✿MJF✿ I thought the same. this is so interesting and eye opening and I almost wish I could experience something like this for a day just to understand what people go through.
There are many stages of blindness. Some people who are legally blind can put in contacts or glasses and see perfectly. Some people will see pitch black, and no special type of glasses will help. Some people can get surgery to cure their blindness. Others aren't able to (right now anyway). Just depends on the blindness and what caused it. There's a huge range of legal blindness. I['m legally blind, but with contacts/glasses I can have 20/20 vision. Without them I wouldn't even be able to see what I'm typing on the screen. Colors, depth perception, peripherals, etc. are the same as everyone else. I can drive (I don't have a handicap sign nor special notations on my driver's license because I always take the test at DMV with my contacts), I don't use any technology for the blind, and there's no limitations as far as what I can do or use. It's just that without my contacts/glasses nothing appears sharp/focused unless it's closer than 5 inches.
✿MJF✿ same
Cammiboe so true I have a friend who is legally blind with out glasses but fine with she even drives a car
Cammiboe what is your prescription? I'm a -7.50 I wouldnt be able to do day to day things without my contacts or glasses but I am not considered legally blind
Somebody should help you to make a youtube video that simulates/replicates visually everything that you described about your vision. That way we could sort of climb into your head and see what you see. I think that would be so cool.
Pauline Taylor Yes
Yeah that would be amazing
Pauline Taylor yes!
Pauline Taylor that’s such a good idea
Pauline Taylor Yaaaass! That would be great.
I’m a teacher and one of my students suddenly began losing his vision this semester. I have been so upset about it because he has such high potential and worked so hard, and then he couldn’t do his homework or see the board. Your videos are showing me that he can still have a full and rewarding life even if his doctors aren’t able to treat his condition. I’m still worried because his condition is undiagnosed, just that it’s neurological, so we don’t know if it will turn out to be a life-threatening cause. But I’m not as worried as I was about his ability to live a great life with impaired vision.
Hope He Will Get Better ♥️
What school and name
Well, "great life". It's a manageable life. He'll get used to it after some time, but I don't think it's something people dream of having.
TBH, they should keep looking into it until they find the cause. But, that being said, it really depends what's causing it. It may be that it hits a point where it stops getting worse or it could be that it keeps going until there's no vision at all. In my case, I've got synesthesia, and because hearing and touch both being higher priority than my vision, this would lead me to be effectively incapable of using any of what I "see." But, over time as my hearing and touch have taken over, I'm at a point now where the vision loss seems to have stopped.
But, much of the time I look blind as my eyes aren't looking where I'm working and whenever I'm reaching into my bag, I completely close my eyes and feel for what I want. Not to mention that I tend to just reach for things without looking most of the time.
Remember, this girl is from a VERY well heeled family. When you have financial security life can be good even with terrible disabilities that would be doom for a poor person.
Who's watching in 2019 from her latest video cause you were curious?
Edit: 2020 now happy new year!!!!!
Second edit: I was not expecting 2020 😷😅
Me lol
I won’t admit....... but ME!
yup
Me, because the videos come up randomly on TH-cam. I just started watching her channel two days ago.
Me
I literally didn't even think about the fact that a blind person was wearing glasses until you mentioned them... And I have perfect vision.
my honest opinion: you are really pretty. and your fashion sense is better than some sighted people!
Kai Song See lol I agree
Kai Song See most*
So true
Too true
*most
I wish I could see what my daughter sees. She was born with her eye condition (Aniridia) and from what I can tell, her vision, overall, has been fairly constant. She's six years old now and starting to learn how to read, and it's not the easiest thing for her. She will begin learning braille soon. I really wish I knew what she can see and what she can't because then I could have a better idea of how to help her see things better. Thankfully she has a pretty good vocabulary and many times, when I ask her, she can tell me what's going on, like the poor baby didn't have her white cane one night, she doesn't like using it in familiar places because she just got it. We were headed in to our scout meeting and she walked right into a lamp post. I thought it was because she was looking at the ground but she said no, she just didn't see it. :( If I'd known that her vision was that bad that night, I would have held her hand so that wouldn't have happened. As it was I couldn't though because I was carrying a bin of supplies in to teach her sister's class. Next time we're bringing her cane.
Wow
your poor daughter
i'm sorry
I am so sorry
God bless ur daughter
@virxxus_ Yes, that's correct. My daughter does have a small cataract in one eye. Surgery is the last resort because not only are there the typical risks of surgery, but there is also the elevated risk of excessive scarring that comes with Aniridia.
Jay Kay my mum always told me to bring my cane out in public probably because things like that always happen to me LOL but I know how it feels for your daughter I walked into mini lamppost and other kind of polls sometimes I wonder why they are there LOL
Wait.. your a dad?
Molly, my 8 year old brother got diagnosed with Retinitis Pigmentosa at 5 years old. I’m not exactly sure how I found your channel but I am SO glad I did. His vision is getting worse and as much as we worry about him, seeing your channel let’s me know he can live a somewhat normal life even when his vision gets worse and you have no idea hopeful that feels! Thank you for your videos and you are such an inspiration xoxo
Hi Molly, I've just discovered your channel. I'm currently on my own vision loss journey, I've got a brain disease called inter cranial hypertension which causes swelling on my optic nerves and I had brain surgery in April 2017 to put a shunt in my brain to drain the fluid continuously... anyway blah blah the damage has been done to my optic nerves now that the swelling is under control and I've been declared legally blind. I have some vision left but what I have is extremely fuzzy and I can't see anything from a few feet away. I'm 27, a single mum to 3 young boys and all of a sudden I've been thrown into a world I'm so unfamiliar with! I've been watching your videos and they've really been lifting my spirits, thank you for sharing your story with us! It's people like me going through vision loss that feel comforted and reassured listening to your positive attitude and helpful tips.
Thanks heaps Molly.
Hi. Just noticed your comment. How are you doing now?
❤U stray strong we r there for and how r u doing hope u r doing good
Laura how are you doing? I've lost a lot of vision, for a different reason than yours, and I'm having a hard time with it. Hope you're doing ok. This is really hard.
Vision loss does not sound very fun and my name is Jacqueline and I was born with an eye disease called Retinopathy Of Prematurity. When I was Eleven I was diagnosed with Polyarticular Juvenile Rheumatoid Arthritis and Uveitis.
I have also been through an Iritis.
I have shunts in my head to drain spinal fluid from my brain and when they malfunction I will get very sick.
😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭
I've been through Cerebral Palsy and a stroke and hip displasa surgery and I've been through Osteonicrosis and Osteoarthritis.
😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱
Life is hard and when you tackle one big thing sometimes more things start happening.
Laura Marston ♥️ strong momma. Sending you love
this is my first time commenting on one of your videos! my daughter Amelia is 1 year old and she is blind. we aren't sure the extent of her vision but we know that she doesn't have very much. she doesn't have RP she has coloboma in both eyes and microphthalmia in both eyes as well. when she was first born we were heartbroken but we now know that there is so much that we can do to prepare her for a "normal" life. your videos are wonderful and I love watching them! thank you!
+Christina Hillary Good luck with your daughter! It's a long journey ahead and it won't always be easy, but just know that she can live a perfectly fulfilling, successful and happy life. I'm doing a Q&A on my RP and living with vision loss later this week, so please feel free to send in any questions, or to message me any time if there is something you're curious about from the child perspective of having sighted parents when living with vision loss, etc. :) xo
Oh, you must absolutely get her into music! If there's any love for prog classics check out Rachel Flowers. She's awesome! Get a solo instrument or a small piano or something (the KORG tinyPiano is fantastic, I bought two: one for my cousins and another for my one year old brother). There's such a rich world out there in the auditory kingdom that sighted people don't even know. Martial arts even (whistles) if you're blind it just makes it all the more exciting. Best of wishes. :-)
Christina Hellaby my name is Amelia too
Christina Hellaby ❤️❤️❤️❤️
Go to see Tommy Edison channel is amazing 😊
I didnt even see the irony in you wearing glasses until AFTER you said something, tbh😂😂
For Props
Same
I had been watching her more recent videos, so I thought this was from when the glasses might actually do something.
Lol me tok
I believe "neon" was the word you were looking for.
:/
lmao do you think shes gonna read this
@@neomemes5627 No do i care no why did u read this?
@@thatenglishgirl930 what
BroSyl lol she actually can read this. Go check her Technology for blinds video. Get some education. It’s 2020 and you think ppl haven’t develop something to help them to read?
wow the glasses actually really suit you. Have a great day!!
Hi, you have cute glasses, plastic frames. How do you pronounce your name? It's Irish. I think it's pronounced EE-fuh. Not Ay-oyf.
Thank you so much for taking the time to describe your vision and experience! It's great to be able to hear about other's experiences (different disease of course). I love your approach to the rude comments! Try to educate and then just move on! Way to go! Keep up the good work, Friend!
I love your videos
YAY Hi Mary, Peter, Ollie... ☺ Fancy finding you here. lol
THE FREY LIFE I LOVE YOU GUYS SO MUCH!!!
Fancy finding you here :)
The Frey Life omg i go. To sick kids
I imagine what she sees is the scene in Ratatouille when Remy eats the cheese and then the strawberry.
That's what i thought too!
whoa, just went down a total TH-cam black hole from watching Jaclyn Hill to Kathleen Lights to Gabbie to this. This is so fascinating, I'm learning a ton!! You keep saying how there is no such thing as "looking blind" and my first thought when I saw you in Gabbie's video was "she doesn't look blind". I guess I always thought blind people looked in the same direction all the time or had milky eyes... or I don't know! You just seem to be looking right at me and like moving your eyes around the room like everyone else does... This all blows my mind, I had no idea that people who are "totally blind" can still "see" some things... You're one tough cookie to have gone through all this and have you vision just get worse and worse and yet progress and make a youtube channel and be a motivational speaker. So wild, I have better than 20/20 vision and don't have that kind of motivation... I'm rambling, like I said, went down a TH-cam black hole about 4 hours ago and it's now 3 am and I was tired at 9 pm lol. I'll stop now. You're amazing.
Gabbie who?
How do you have better than 20/20 vision
The flashing lights, I think migraine sufferers will understand. That crazy flashing pattern you see right when you get a headache. Luckily it is temporary for us.
I hate the flashing lights they are terrible
***** People have different migraines that are called ocular migraines. The flashing pattern shows up in your vision and stays there for a long period of time
Teya Fox is there anything that changed in your life that you think may be related to them stopping? Like less stress or cognitive behavioral therapy or diet, hormonal changes, exercise, a new outlook?
I've had visual migraines for most of my life. My manifestation of them is kinda weird. I get full on rampart scotoma's. . . which is not the strange thing. If one comes on when I am reading (something I do a lot) the first sign I get is that while I can still see the words on the paper, they are meaningless. For some reason my brain looses the ability to process print. It can be pretty handy, because as soon as that happens it is my cue to go pop some ibuprofen and smoke a bowl. In that order (yes, I use cannabis to treat my migraines. In combination with a vasodilator like ibuprofen, nothing kills one faster)
Amanda Brown I also had severe migraines start in highschool, went away from 18/19-22ishand then showed up extremely frequent to the point of intolerable at age 24 or so. I noticed that the ONLY thing I did during those years without migraines were "recreational" psychedelic "drugs"... I was partaking, in a very controlled way, in things such as mushrooms, LSD, mdma.. I was a "drug snob" in the scene and wouldn't do things that looked cut, unnatural, or just... Off. And I researched EVERYTHINGGGGGG before I ever even would utilize MMJ for the miracle it is because of the stigma around such counter-culture things. BUT I will say this; it was the smartest thing I ever did. Isolating those years to partake (usually about every 6 months, sometimes a little less time between using, sometimes more time between uses) helped me see clearly what I was and wasn't doing and made it obvious to me, and a couple of my current doctors(who look back with me in hindsight) that the occasional use of psychedelics, and even pure MDMA, can help stave off migraine attacks, and MDMA is a descending pain receptor antagonist(I believe that the correct word) which helps with descending nerve patterns such as fentanyl, ketamine, etc do. So between LSD/mushroom trips, and monitored doses of MDMA, both nerve damage and migraine flare can be controlled by the neurological interactions they have.
It's extremely interesting to think about, and I honestly still-even after my genetic disease diagnosis of Ehlers-Danlos Syndrome-occasional dose with LSD to try and keep the migraines at bay and so far it's worked.
Girl you're blind and you do your makeup better than I do lol
Lennicks Monroe oh me too lol
.
Sameee tho
Len nicks same
Sammmeee
Me: forgetting ur blind and seeing u with those glasses and being like I didn’t know you wore glasses - oh they are fake and she’s blind thank u brain for catching up
I was just thinking that like... Why...??? Oh 🤦
Same
Same, and even thought "Oh, she is so cute with glasses!" (well without them too)
Annie Mack wtf are you blind?? Do you know wth you're even talking about?!
omg I didn’t even get that until I read your comment wtf 🤦🏼♀️🤦🏼♀️🤦🏼♀️
Thank you for doing this channel. I am now disabled and I love everything u stand for.
you're absolutely gorgeous!!
You are an inspiration to me because before the age of 40 I will be legally blind. I’m 15 now and I am really trying to live in the moment now, but knowing that you got through the transition of partial sight to blindness makes me believe in myself. I love you and appreciate what you do!!
My first boyfriend could only see light & Shadows and I'm so glad that you are on TH-cam to explain exactly what you see and what you can't see, understanding how a person functions without sight or hearing is valuable! Thank you very much.
Stay positive girl. I can imagine how this is informational and you're to terms as you've faced it your whole life but for your -- hopefully very little/few down-days, stay positive & keep pushing through the days! :)
I a research student at the moment and in the lab i work in our main focus is manipulating healthy adult cells to transdifferentiate them into specific tissues to help cure eye diseases, specifically like RP. We are just starting to apply our trial procedures to larger mammals than mice, which means we hope that within the next decade we will be able to begin human trials. Basically, it means we have developed a technology to create at least partial recovery of retinal and photoreceptor cells. So hopefully in the near future we will be able to help visually impaired people everywhere!
Swimmy Chick just make sure you are careful with pseudo endpoints 😉 We don't want it to grow and not stop eh? Maybe we'll run into each other one day.
If I'm not mistaken you said you have no visual memory of colors, except for the ones you see still. Can you go more into that?
She no longer sees colors. The "fireworks" she described still occur, but she cannot actually see the colors anymore. I believe once you are no longer able to see, it takes 7 years for you to lose all visual memory. She only remembers what the colors of the "fireworks" were when she could see, but she doesn't remember what those colors look like anymore and can no longer see them.
I think you described how you see really well. It made sense to me. I also didn't realize you can/will forget color. Learned something new.
I was born with a cataract in my left eye which was removed when I was about four weeks old. I can only see shadows, shapes and colors but I am able to wear a contact lens which helps some. I can totally relate to the depth perception issue and am always tripping on stairs and such. You honestly made me cry because as poor as my vision is, it can clearly be a lot worse and for that I am very thankful to have what I have. I really appreciate what you are doing here
I have an extremely rare version of optic nerve hypo plasia, most who have what I do song learn to talk, walk, and can't feed themselves, so basically the parents have to constantly care for them. luckily for me, I am an A student and made it into advanced reading for my first year of junior high. I have no depth perception, I am nearsighted, I have no side vision, I have no 3d vision, I am 95% blind in my left eye, and less than 40% blind in my right. in my left eye I can see light, shadows, and slight motion. I had to have an eye surgery on my left eye when I was 4 to straighten it out, and I am close to needing another one, and I will know in six months when I go back to the eye doctor. I hate getting my eyes dilated because of the light sensitivity, but I have to go back each year too so we can monitor my eyes closely. so I kind understand what your going throuh, by the way, I learned a lot about RP in this video, thanks!
Thanks Molly, you are great! Oh yeah, lie about being blind, who would do that!?!?! Desperate Blind Girl. You are beautiful (just in case you haven't seen that recently.). You help all of us on this journey. I am one of those little old blind ladies. I am 70 years young and have been on this journey since August. I have Myopic Deterioration. I have been extremely near sighted all my life. Instead of my eyeball being shaped like a grape it is shaped like a football. My eyeball are poking through my retinas and I will loose my vision. You encourage me. I feel somewhat guilty for having some vision for so long. I love your humor! I try to be positive and I get what you say about your remaining vision. If it weren't for the destination, it is an interesting trip! You keep doing what you are doing. And thank you from here in Houston, TX. Merry Christmas
Thanks for being so incredibly patient, informative, and engaging. Your kindness is really inspiring.
I absolutely love you! I have watched some of your videos and at times it feels like I’m listening to myself! While I do not have RP, I do have a severely damaged retina and Nystagmus. I also know how it feels to have sight for many years and then lose it. I decided not to let my blindness consume me...my life did not end when I lost my sight - it just got more challenging and I have to learn to do some things a little differently. Even without sight, I still make jewelry, crochet, paint my nails, put on makeup, cook...you get the idea :) Anyway, I thank you for sharing your experiences and adventures...you are very much an inspiration and I wish you continued strength and success!
I have an idea! You could work with a VR team to create a game that simulates what it is like to have your vision or other blind people's vision. I bet a lot of people would be interested to be able to experience it! You could collect the data by people's descriptions. It shouldn't be that hard and it would be an amazing project!
I adore you, Molly. You really do inspire me and have educated me so much. I'm a designer and I have been designing a lot of my projects with braille sings and incorporating ideas for the blind wherever I can. Your videos have been so helpful!
The problem is even if she could describe it to them, she could not confirm that what they created matched perfectly with how she sees because she couldn't see it.
You should try designing a video game that a blind person can play.
Thats a great idea!
@@jacquelinesmith-jackson2815 That..... is an interesting idea.... A video game not based on sight, but rather sound... or touch. It'd require a specialized setup, but that'd be really interesting.
Kyle R
Maybe 7 or 8 of your friends could design it one day.
I'm visually impaired and the amount of times people have told me "just wear glasses" is astounding like wow I'm 18 years old and you think I've never thought of that? Or no one's told me? 😒 So that beginning bit really made me laugh haha
Brandy Lynn It's annoying for me too I do wear glasses and I have Nystagmus. So people presume my glasses correct my vision. No, they correct my short sightedness, nothing can cure my Nystagmus!
I tried describing my vision to someone some weeks ago, and they kept telling me to get glasses, even though I was telling them that I have glasses and wore glasses for years, but they were not correcting my vision. I have RP.
Brandy Lynn haha yeah I can totally relate! I have a very slowly progressing RP and have some vision loss. People always say"just wear glasses!".I just ignore it now. Haha😃
Rambling Millennial yeah I have RP too..some people just don't get it.
But when you have glasses everyone shows you their fingers and it's like they don't change, they are fingers.
Your channel came up randomly on my feed and I absolutely love it!!!
You have a beautiful soul, Molly! To me, you are my eyes into blindness. I see that you are more alert, more cognitive, more advanced than many human beings. You are an inspiration to many!
can you see in your dreams? love your room
Thats a really good question....
Flor Castillo ohhh yes. I wonder the same thing now
she said her visual memory is gone, she can't pull up images in her mind anymore, so i'm guessing no, she can't see in her dreams. she doesn't know what things look like anymore, even though she used to be able to see them.
Flor Castillo awww thar is so sad I wish I could give her my dreams. She probably just dreams of the "fireworks".
I think she can see some slight images here and there, I have read about this before and they say that the people who were born blind, obviously just have audio dreams... but the people who have been blind for only a couple years, or have been able to see when they were little, only have dreams about memories and audio.
It really is so fascinating. Is it ever scary to be blind? Not necessarily in a vulnerable/safety way but in a mental way. Like how kids (and adults even) are afraid of the dark? Monsters and ghosts in the dark and whatnot?
hayley duquette I always wondered that
Dave Strider omg yes this is SO true!!! I had RP my whole life and whenever I’m in a crowded area I start to want to cry like a baby that got lost in a mall, because I can’t really hear/see where the heck the person I came with is! I usually feel this until they come touch me or call out my name and a gush of relief comes right up.
I’m blind in one eye and your channel is very inspiring I love you Molly! Continue the good work.♥️
Thank you for your vivid description of the way you view the world.
I have 5 different eye conditions that cause a more limited type of vision than the average person, so I find myself trying to describe what I do and don't see, or "how" I see things compared to them. But I am blessed that I have so much more vision than someone with the condition that you have, that I almost feel bad for even mentioning my small issues to anyone.
I love watching your vids, you are a beautiful person inside and out, and you are great about educating people as to how to act/speak around someone with a vision disability.
The way she describes her blindness I imagine it really similar to thermal-vision but instead of blue-red-yellow different shades of black for the light intensity instead of heat
Hello molly my name is Ely I am from the country el salvador a little Latin country I can not speak English to connect with you I am using a Google translator I admire you as a person motivates me to continue fighting your story so far in the country I follow it on your TH-cam channel
Light and shadow.
My older brother has RP. I appreciate your description of what you see. It gives me more insight into what is going on in his life. Thank you.
Who else squished their eyes when she talked about the fireworks
21stcenturyenigma nope, squished...use your hands to squish your eyelids to see the fireworks.
21stcenturyenigma theres a huge difference between squinted and squished 😂
Isn't that just shutting your eyes tightly? I call those floaties
Why was there an actual firework outside rn-
@@Noone-ru7md 🤦♀️
I love your videos, and hearing you tell what your perspective is with your RP. I am fully sighted, so it is very educational for me. The complete lack of depth perception was really hard to wrap my mind around. Thanks for giving the example with the oncoming headlights. I know you've said that you have no color memory, except for the three fireworks colors, so it fascinates me when you describe an outfit, or an accessory and describe the colors and patterns, and talk about how you like certain colors together, etc. You do an amazing job, and always look so sharp and stylish. How do you get a feel for the color combos and patterns without color memory? Thanks for letting us ask these questions!
+Rhonda Weber I can understand that depth perception would certainly be difficult to understand as a sighted person. Like I said, I wish others could see through my eyes every now and then, because I do feel like it's really interesting. I have ALWAYS loved fashion and the beauty industry and one time my old assistant turned to me and said "some people need to look around them, at store displays, magazines, and at people on the street to see what's fashionable and what to pair with what, but you just know, fashion is just in you." And I guess that's the only way I can describe it. I grew up giving fashion advise to everyone around me, like a little Stacy London or something haha! My mom and dad are both very fashionable, and so is my brother. My maternal grandmother was a wedding dress designer and to this day, in her 80's, is obsessed with fashion and shopping, so it certainly runs in the family! :)
+Molly Burke Well, I guess it is just in you! It's uncanny how good you are with style - decor as well as fashion, from the look of your office. BTW, my favorite David's Tea is Cream of Earl Grey. Now, I have another friend hooked on David's - you should get a commission!
Molly Burke where do you live?
Britney Volkman um stalker
Autumn smith shut up no it isn't
So I recently found your TH-cam page and I’m watching a lot of your videos. The first time I watched your Dove commercial brought tears to my eyes. My daughter is 2 1/2 years old and is also blind from ONH but has some light perception and we believe she can see contrasts and something in the inner corner of her left eye. We have to wait until she get older to know any more. You are such an inspiration for me as a mom and I get to learn what it’s like from an adult perspective. I’ve always had that mentality that just because my daughter has a disability doesn’t mean she needs to be disabled and she can do almost anything she wants! You have a beautiful soul hun!
Hey Molly! I just wanted to let you know that you are really inspiring! I’m not blind, but I watch you because I admire your personality and ability to not let your disability get in your way.
It’s so great that you’re educating people and telling your story! I’ve learned so much just from this video. It was a great description and it’s awesome to learn about others’ experiences with the world around them. Yours is so different from most peoples so thank you for sharing!
Can you feel your eyes moving back and forth like that? I would imagine it would make your eye muscles hurt and maybe even give you headaches.
I hope not.
Ashley Rose I dont think so. She has talked about it before, it is involuntary muscle movement and when she was little she didnt know she had it! Only after someone mentioned her eyes shook. Hope that helps :)
LOVENPEACES2 oh good. I'm glad it doesn't bother her.
I have nystagmus too (that involuntary eye wiggling). It definitely doesn't hurt and those muscles don't get tired. Actually, your eyeballs are always moving too, even when you shut your eyes, it's part of how they work, but the movements are so tiny you can't readily see them. Since my brain doesn't see an image, it doesn't keep those movements as small and so my eyes drift farther and you can see them wiggle. They move faster or more wildly if I'm super tired, sick, or stressed.
sejmb are you also visually impaired? I recall Molly explaining that you can have nystagmus while sighted. I’m just curious if it is common for people with nystagmus to be visually impaired or if it’s the other way around.
Ashley Rose OMGGG..... I WAS JUST ABOUT TO COMMENT THAT (UNTIL I SAW UR COMMENT)
you're really good at describing things! I just found your channel today and already love you! you're really likable :) greetings from your new subscriber from Germany :)
Mel Anie hi na auch aus Deutschland?😂😁🙋🏻
Mel Anie agree 100% she is so sweet and cheerful and I ❤ her personality so much.
I've been watching a few of your videos and collabs with other youtubers, and I gotta say you are amazing! Even though you can't see the glasses, they look super cute on you and I'm so grateful to you educating everyone, including me, about blindness and disabilities
You kept your Canadian way of saying sorry and it makes me smile because I’m from Montreal
at least with the fireworks, you see the three prettiest colors.
question: have they ever tried transplant with RP patients? I know they can successfully do corneal transplant but I'm not sure about other parts of the eyes. and I know with corneal implants, those work because the issue is just the eyes. does RP have a neurological impact? I know people can be blind with perfectly normal eyes due to neurological disease or you can have blindness from an issue with the actual organ of the eye. so if RP is purely eye related, from my understanding of the medical field, it seems possible? of course, only for those patients who wish to have that. I'm just asking from a scientifically curious standpoint, not that I feel anyone should or needs to receive treatment. you're inspiring in your strength and openness to educate. have a great day!
Jordan Leigh Wheatley well the problem is with the retina, which is internal. The eye is a very complex structure, breaking through the layers and opening it up to replace the retina would be supper difficult and is yet to be achieved. On top of that the eye is in the orbit, and attached do the optic nerve, making it even more difficult to reach deep layers. The retina has a lot of nerve cells, mainly rods and cones, one set sees color and the other sees light and dark. Basically let's hope medicine advances far enough in future.
thank you for the knowledge, and those glasses are gorgeous on you and your foundation is PERFECT
You are in inspiration, I've watched a bunch of your videos and I love them. I am personally not blind but do experience episodes of vision loss. I am part of the disabled community and have service dog who helps me live my daily life as well. I just want to say thankyou for putting out awesome videos!
I admire you. Thank you for being 100% you, you go gurl!
Molly,
Wow! I love your description of how you see! I really find it informative!
I love how your eyes dance it’s adorable
Eyes dancing... that's a cool way to think about it
Hello! I love your channel! I’m actually completely blind in my left eye and def in my right ear and I’m so happy to see someone educating others on blindness. I always get questions on whether I’m faking my blindness in my one eye and I totally understand how annoying some questions can be. I’m just gonna end this with, I totally love you!
I was diagnosed with RP today and tbh I was completely terrified to know I'm slowly going blind. However, after seeing your video and hearing you talk about your journey and what you see, it's really helped calm my nerves. Thank you for what you do.
Great vid, I am in love with all your educational videos! You are my favorite new TH-cam star! I found out about you from a tiny article from People magazine recently & so I started watching your channel. I have an aunt who is slowly going blind & I thought I could learn some tips from you to pass along to her. Thank you for your wonderful videos, keep up the great work!
get your aunt in touch with blind services if in the states. all states have help for the legally blind.
What someone might mean by a person "looking blind" or if they say that you "do not look like *you* are blind" probably refers to someone like say Ray Charles, who everyone knows is blind, and who wears the dark glasses to hide their eyes, (because of the cataracts or whatever reason), and one who can't keep their eyes, (or sometimes even their head), from "wandering" all over the place, (because they were born blind, etc., and do not know how to keep their eyes steady like you do), THOSE are the people who quite obviously appear to the average sighted person to "look like they are blind"... You on the other hand, (since you had sight until your teens), do not show those "obvious" blind person traits, so THAT is probably the main reason that many people who don't know you might think you are "faking blindness"... But this video clears up many questions that I (and probably quite a few people who might see your videos for the first time) had about your condition.
I wonder if that also has to do with the fact that she can see certain things. Whereas if she didn’t see anything at all, I wonder if she would be able to control them at first but over time would lose that ability?
She’s also good at making eye contact and moving her eyes, whereas a blind person stares straight ahead
That is a very good explaination! :)
I have a different form of RP (most likely considering that I've not lost my vision and neither has my mom). It made me so happy when I found your channel, because I really couldn't find many people online that knew much about the disease. I plan to make a YT channel talking about RP as well as my mental health journey as I have depression and anxiety along with another highly stigmatized mental health disorder that I want to teach people about. You're definitely someone that I look up to.
My dad also has RP, watching your videos really helps me to understand what he goes through more.
to those who are saying fully blind people see pitch black: it's not like that. they don't see at all. think of it like this. what do you see out of your elbow? nothing. you don't see pitch black you just see nothing. it's hard for people with sight to comprehend that idea of seeing nothing but hopefully that comparison helps. :)
Leah McAllister Black isn’t really a color, it’s the absence of color. Like, if you close your eyes there’s still color even in the darkest area there’s still dark but not black. People with dark skin usually have purple/blue or pink undertones, same with hair. If you see the absence of color then you’re seeing black. Just black. No description, no nothing. It’s literally not anything. Black.
Wow that's incredible
But Black is the absence of a colour
I think because 'nothing' is so hard to imagine, most of us imagine blackness in the context of blindness.
Sadie Newton, black is the presence of all colors. Black is the absence of light.
@Molly Burke >>> THANK YOU for making this video!
You are a beautiful person! Continue making videos! 💕
Even though you could be my daughter, I am learning so much from you! I am losing my vision due to multiple retina detachments. This is a fairly new issue and I really struggle with acceptance. Thank you for being such an amazing human being and know that you are giving hope to others! I am so thankful that my co-worker saw you on the Today show and let me know about you! Many blessings.
hey, do you have a version of your videos where there is only your talk and no background music?
Anna Jóna Heimisdóttir; I totally agree with you.
YOU GO GIRL! You do you boo, your so pretty and amazing I wish I could see things the way you see things. Your so unique and I love it so much.
😍😘😇
omg everything about you is SOOOOO inspiring. you have a beautiful attitude and personality!
I don't know how I came across your channel but I'm so intrigued already. This video was so informative & interesting :) I love to learn & I definitely feel like my eyes have been opened more to what being blind can be.
I've been accused of faking my disability too.
I hate when people do that. It's like, I have no obligation to prove to you what disability I have!
Mikaela Piasecki that's me and my PTSD. when I finally break down and tell people, they laugh and say, "how could you have PTSD?" but the reason is because I put on the mask of happiness on in front of others. I totally get what you're going through, being not only frustrated but incredulous that people would actually no believe you, or even deny that you have a disorder.
So sad and wrong. Ppl are ignorant
Wow @one starry night when I had bad PTSD I went through the same thing. I had a “friend” try to tell me that mental illness is bullshit (because people are happy in Jamaica) and it’s “not real” when I finally opened up to someone about my condition- but I was met with heartbreaking invalidation. Never spoke to them again after that.. I don’t understand why people think their opinions are more important than just supporting those who struggle.
Mikaela Piasecki people like to say things like that a lot. I'm not sure why. I've been told that about a million awful things in my life. I'll never understand what they get out of it.
My dad has RP and you've made it a lot easier to understand what he goes though. thank you for that. I know that he has a lot of trouble using technology and I was wondering if there are any tips and tricks you have and any preferences on which devices you use! thanks so much!
thesarort774 hi, I know I'm not Molly but I'm completely blind and could possibly help you and your father?
thesarort774 she has a video on how she uses technology!
She has 2 videos on what products she uses and how she uses them (her phone, iPad, Mac computer, Apple Watch,etc
Thank you for making this channel and for educating people on blindness/ visually impaired. I've been visually impaired my entire life and knew there was people out there that was going through what I have but watching your videos I can fully relate to you. You are such a beautiful person. It hit home when you mentioned you've been going to specialists since you were two years old that's around the same age as me and I lost my vision completely in my right eye at 15. My left eye is my gem I'm -22 I was born with myopia and have a high chance of a retinal detachment one day in my left eye. You are such an inspiration being able to openly talk openly about your condition and being blind as a whole. Keep going! You're amazing :) you've gained a subscriber I stumbled across you when you were doing a collab video with gabby and you were describing do a sketch artist what you thought she looked like, that instantly made me want to learn more about you and here I am a few videos deep into your channel and I'll continue watching and learning more!
You’re so good with your descriptions. You had me at one point closing my eyes and trying to apply pressure haha. I know this is a pretty old vid but thanks for helping me understand. So fascinating! And hopefully my wording doesn’t come off incorrect, but you make it more easier to deal with daily struggles. I have Alopecia Areata. It’s a real crappy disorder that makes all of my hair fall off. I’ve lost my brows 😭😭 the hair from my scalp and all of my facial hair. I get moments where I get into my head and I guess get depressed and have the “why me?” thoughts. But seeing this goes to prove that there’s someone else out there that had it worse (this is the part I hope doesn’t come off bad). I mean it in the sense that losing your hair and not feeling so pretty is no where near compared to the pain and struggles one faces when they lose their sight. Hope that didn’t come off ignorant! Just thanks for showing me that the grass isn’t always greener on the other side ❤️
I so LOVE those drops. I've had detached retinas and go t all the tests you've mentioned. I hate getting photos of my eyes, because my eyes move around.
+Molly Fanton Yeah, my eyes twitch constantly so it can take awhile, that's for sure! Especially with the drops in that make my eyes so sensitive and sore.. I feel ya!
Molly Fanton o
It’s fascinating to hear how you can navigate by lights. I can actually understand how you’d do that, because while I’m not blind, my vision is so poor without glasses that anything more than about 2 centimetres away devolves into a blurry, blob of colours, which means that at times I end up navigating by lights and shadows. I mainly do it in dark or very colourful locations, as in the dark I’ll see a black blur and if its colourful everything looks like a ball pit, but if I’m in a new location then I quite often will look for light sources and navigate with them because I don’t know what the different colours mean. I can totally imagine how it must feel to have to live a whole life like it.
Also, I don’t have depth perception or distance perception either, mainly because due to some health conditions I’ve had my whole life, I usually only use one eye. It’s good to know I’m not the only one, as no one seems to understand how bad it can be. I’ve actually developed techniques for working out mentally the distance between me and other objects using walls, ceilings, the ground, and shadows. Annoyingly, even now that I use both of my eyes for vision now, (which took quite a lot of training to make that second nature.) I don’t have proper depth perception or distance perception, because the issues with my eyes basically mean that I never had depth perception or distance perception to begin with.
Hi, I’m really curious, without depth perception can’t you tell something is getting closer because it’s getting bigger? And in the case of cars, the lights are getting further apart? Not doubting you, I developed proper depth perception late because of bad eyesight and it’s one of the cheats I use. I hate it when it’s a motorcycle or a car with one light out coming towards me at night because it’s so much harder to tell.
I‘ve been blind in a way like you, thanks God I got my vision back. Now, I really want to give other people with the same issues hope.
So happy to have discovered your TH-cam page! Although I am not considered blind, I have significant sight issues due to my condition called : corneal lattice dystrophy . My issue is now I am now in my 50’s- I could really use Information on technology - what apps, websites, instruments for use with computers for potentially to work on computers.
I’m so high functioning, that I too, appear more sighted than I am. What makes it even worse, is my vision changes BY THE MINUTE! And light conditions - OMG, are game.changers!
If you can offer any insight on technology or websites for me, I would greatly appreciate it!
Anybody else keep staring at the ring light reflection in her glasses? It's reminding me of donuts and now I need a donut. Haha
Beth and Chris
Diabeetus
Your humor is wonderful :)
This was actually fascinating Molly and very interesting! I also wish we could change places and I could see what your talking about! Thanks for this video girl!! 😊
You are amazing !!!! I appreciate so much of that im hearing. I had eye surgery begore 10 months. I am crying every day. You are very strong and i admire you. Stay like this strong 💪
Well said molly just like me I have usher syndrome myself u know good vedio molly and have a great day
Molly sounds so Canadian when she says “Sorry” lol I love it
My brother has a good friend who is blind and every time he sees him around, he covers his eyes as if to say "guess who?" and the guy loves it because he knows exactly who is there. I love your descriptions and I learned a lot. Keep making videos you are amazing!
I discovered your channel very recently. I think you’re amazing with such a positive energy. You are also particularly pretty here... love the glasses on you and that lip color suits you so well.
Ohhh. When I watched the video about Apple products being blind-friendly, I was like "she has really good sense of direction for a blind girl". And now I understand. Just like deaf doesn't mean a person totally can't hear. Imma go check out your guide dog videos now, cause I love dogs ☺.
Who is watching her in 2019? Today for me is June 19.
July 14 2019!😁👍
July 16th
June 19th is my birthday 😁
July 18 😂 same thing a month apart
August 8th. 😉
Since I've watched your videos, I've learned that there is "what you see" and what you "see". 💙 🌹
Molly, you're so amazing I could watch your videos all day!
I love how she says what she sees is complicated and I just think is it more or less complicated than what we see? like how confusing would it be if one day she just woke up with perfect vision and she was like "CRAP THAT'S A LOT"
True
She shares that she went blind at age 14, so I reckon she remembers what it was like to see with full sightedness. I also imagine that it contributes to much of her "passing" behavior, as she was socialized as a sighted person and has a concept of what the world looks like
You always look so pretty in your videos
So many things she spoke about, i never thought about. As a person who can see, i always wondered how it would be if i couldn't. I always thought of it as a absolute end of everything i know. But no.
She shows there is a way for EVERYTHING to make it work for you, no matter if makeup or technology or whatelse. Thats just amazing. She is just amazing.
I am studying to be an optician and I saw your video. It really gave me a better insight in how blind people live their day. I really have the upmost respect for you. You're amazing!