I’m Blind, This is What I REALLY See! September 23, 2019 Tags:Advise, and, blind, experience, Genetic Disease, glasses, help, journey, Light Perception, Low Vision, molly burke, Rare Medical Condition, Retina Complex, retinitis pigmentosa, rp, Shadow Perception, SickKids Hospital, the, tips, treatment, tricks, update, Vision Loss, visually impaired, What I see, What the blind see, you Related Posts 5 Tips for Contact Lens Dryness | Best Contacts For Dry Eyes POKÉMON Detective Pikachu – Official Trailer 2 Webinar: Robotics & Coding for Blind/Low Vision Students About The Author Larry Olson 100 Comments Isabel Gilchrist Molly… Car lights are only on at night… June 3, 2019 Reply X X I had no idea where you were from until you said "sorry" 😂 June 4, 2019 Reply Amber Brooks Please stop the music June 4, 2019 Reply RocKiteman _ 2001 @Molly Burke >>> THANK YOU for making this video! June 5, 2019 Reply Julia YOU LOOk GOOOOOOOD IN GLASSES!!!!!!!!!!!!!!!!!!!!!!!! June 9, 2019 Reply Woman Of Love Mind blowing explanation. Thanks June 11, 2019 Reply FrancesBaconandEggs 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. June 12, 2019 Reply Kayla Perry Thank you for sharing this! I work as a Retinal Ophthalmic Assistant so I've seen a lot of different pathology dealing with the retina. I know so few people really understand anything pertaining to the eye because most people take it for granted that they have no vision problems and don't really learn about the eyes unless they develop vision changes. I love how open you are about talking about your story and educating others! June 12, 2019 Reply sunil posupo When she/u lost her vision.. Is it when she/u was/were 14 years old or when she/u was/were in 4th grade..? June 13, 2019 Reply Kidgaming Vlogs omg! an ad just popped up and it said hi! we just went on a trip to bolly murke and i was like wth! June 16, 2019 Reply Zeina Almoataz Omg molly's hair June 17, 2019 Reply MaMiMuMa I'm so envious of her teeth. June 18, 2019 Reply Reborns 180 Guinea pigs can’t tell how far they are from the ground too June 19, 2019 Reply Hadley Robinson Who is watching her in 2019? Today for me is June 19. June 19, 2019 Reply ElReyDominicano612 Aye team RP, I also have LCA2 which is also rare. June 21, 2019 Reply The Demon That wall rug triggers me June 21, 2019 Reply Dayna Bailen I had to do that test recently because I was seeing floaters. It was super uncomfortable. June 27, 2019 Reply Abby C I have been seeing black pulsing lights in the center of my vision pulsing out, I've gone to the eye doctor, and no one knows what is going on. It seems to only happen when it is really really bright out, for example when I am driving. It also seems to happen when it is pitch black, except they are a different color. It is white pulsing light. No one knows what it is, but sometimes it gets bad, though I can see through them. I also have really, really bad night blindness. Everything becomes fuzzy and colorless when it gets darker and I can only tell shapes of things, not anything specific. June 29, 2019 Reply Leah L You see fireworks constantly? Like even when your eyes are closed? Does that fatigue you or strain your eyes at all? In a different video you mentioned how you can’t believe sighted people don’t get overwhelmed by all the detail they can see, but dang, I wanna know how YOU don’t get overwhelmed by fireworks 24/7! June 29, 2019 Reply meg nemo I have amblyopia among other things my depth perception is poor but I can see stairs because the shadows indicate where they are. I cannot tell you if somthing is ten or 15 feet away. I can tell if somthing is getting bigger or smaller and that gives me the ability to sometimes guesstimate how far somthing is away but riding in the car does make me very anxious so i can sympathize. I am very light sensitive and have to be very careful about ocean water chlorine in pools and about what makeup gets close to my eyes I see better then average in average to dim lighting and as long as the sun isnt real bright like it is from 1130 to 300 i can see things in detail very well. Alot of people make assumptions about me too. I have both amblyopia and dysgraphia so yes I can read and write but handwriting takes as much focus for me as brain surgery I would imagine. It is as hard for me to hand write somthing with all the stuff my eyes do and the cross signalling my brain does as it would be for the average person to pat their head and focus and retain info from a college lecture and write a business letter by hand at the same time. Because of all this I can type this out and I speak eloquently but I will make serious errors with handwriting within 20 minutes and serous errors with typing after an hour. I also test 30 or more points below my IQ on almost all tests. The only reason I would worry about what narrow minded peoples opinions are is if these people have the power to interfere with anything you do. I used to not care at all about what other people thought at all because most will not take the time to examine themselves and see if what they are thinking is accurate anyway. The danger in that is that sometimes these people will judge and occasionally they will have enough power to mess with you. Just weigh it out. if these are just some arrogant idiots that know nothing and like to act like they do ignore them and be your best you. If somehow it just happens to be an individual with the power to mess up the good you are doing watch them and figure out how you need to proceed. June 29, 2019 Reply Isabel Durnan 5:15 I’m allergic to the numbing drops!! June 29, 2019 Reply Natalie Rozean Can you get fetal retinal cell transplantation? It’s proven to help in AMD 100% & 70% in RP. Recipients are still considered legally blind, but improvement is remarkable and degeneration ceases. (PTs w RP have maintained their improved vision w no increased deterioration for 6 yrs and still going) I’m sure you’re MORE than aware of all your options. I’m just curious as to what you’ve investigated. I’m not an eye specialist. I’m a Biologist and have a mutated gene that progressively destroys my organs. (Stem cell could’ve resolved that) So, it all correlates. It’s great that you’re educating your viewers. Teens seem to be intimidated by genetics, science, biology. This generation has many new career options. (YouTube, gaming, etc) Discussing YOUR condition and inevitable blindness may hit home with some, making them aware that some still HAVE take the less glamorous-more difficult path of college/university. Although youtubers may have more potential to become young millionaires by doing clothing hauls or letting the car ahead pick your food,all the $ in the world can’t buy you vision. IM CLEARLY NOT REFERRING TO YOU! You are blind. Many would go on disability, sit at home doing nothing and not even try. I commend you. I’m not suggesting you have limits due to your disability either. Your generation may be affected by lack of those pursuing higher education. You will ALL need doctors one day. Gen X & the first batch of millennials who earned a degree will die eventually. The lack of medical knowledge from viewers too ignorant to even understand blindness is disturbing!!! “YOU DONT LOOK BLIND?!?!” Seriously? They should be embarrassed for accusations based on ignorance & ashamed by their laziness for not researching before attacking you. Hopefully educating viewers will hit home with some. When dropping out of high school is acceptable, medical school will be unheard of. I wish you the best with your vision. Stem cells can cure soo many different diseases. I know a man who traveled to Bangkok (leaders in stem cell research) and literally grew his own heart valve. By educating people, they won’t oppose stem cell research, rather support it. Hopefully this happens and you can one day be blessed w sight. Sorry so long! Good video! June 30, 2019 Reply Indigo Sky I believe "neon" was the word you were looking for. July 3, 2019 Reply Megan Chambers You can see the ring light in her glasses July 3, 2019 Reply letitia dalton I was born with cataracts and they had to remove it twice. My vision is really bad and I've been afraid to loose my vision completely so I try and do things without my glasses. Your an inspiration that loosing physical sight does not mean I cant enjoy my life July 4, 2019 Reply rolie pie Do blind people go on 'blind dates', or deaf dates? July 6, 2019 Reply scarlett pebb When I clicked on this video it totally blacked out to nothing but darkness, lost the play and pause button, tried to click off but it wasn't clicking off and I was just like "what couch is she on about??" there must be some sort of glitch in the matrix today. I was starting to presume it might be an artistic take on the subject, but I remembered how she talked about her "fireworks" which see sees sometimes; I keep wanting to say that particular statement on fireworks really makes me think about phosophenes… which are the (from smallest to biggest) yellow, green and purple glowing sensations in your eyes as a result rubbing them over and over in the dark. The phosophenes do look like fireworks, which could be why she loves purple, it's the largest colour in the phosophene circle. I'm not trying to presume what you see molly, I've been subscribed for a while because I'm trying to understand about how different people interact with the world and how we can help to make it a better place to live in , I've always said like if Im going to meet a person on the spectrum of blindness I'll wear sequins, I have these reflective mirror shoes that the sun light bounces off of and I understand with mollies particular condition that her eyes have more light sensitivity but you can't over wheIm them with too much light, so touches in the right places to create some light illusions I feel is helpful.. but if it isn't then I'd like to be advised. It really doesn't take much to try adapt to someone else's rhythm and find fun creative ways to do things, I wish there was a list we could get to just try and see how daily tasks can be better altered… Sorry for the long post July 6, 2019 Reply Emily Stretch https://www.youtube.com/watch?v=uMVRokgCGVw I found this video that sounds a lot like what Molly might see (minus the colour bursts she talks about). I know I was endlessly curious trying to imagine what molly could see while watching her videos so thought i would share. July 9, 2019 Reply Danielle summer Pitmon’s Life I only just now saw this video but a lot of things you’ve talked about are very true and accurate I personally was born with cataracts I’ve had 20 operations called dealings to remove the cataracts and in the process they had to remove the lenses in both eyes and I have damaged retina of multiple cones and tubes like in my eyes and they are damaged from the kneeling is to remove the cataracts now in my 20s I gained glaucoma problems which is damage my redness even more and I can never see out of my left eye anymore because I lost all light perception in it I’ve had surgeries for the Glock coma done on my eyes the only thing at work and I’m not even sure if it’s working much anymore is having a shot in my right eye and I am slowly losing more sight in my right eye to her now I can only see near tunnel vision no peripheral vision. I’ve never had any depth perception at all mine is progressively getting worse over the years and main reason why is my birth mother when she was caring me in pregnancy she had contracted rubella and now I am have multiple birth defects because of that I’ve had heart problems I’ve had to have a whole patched in my heart now I’m starting to develop some chronic illnesses with my joints and I’ve been told that eventually one of the birth defects that I could have would kill me I have even developed hydrocephalus water on the brain I could keep going there’s a lot more Somali if you would like to find out more about me please give me a message to my Gmail or a return mo to send a return message on here but my Gmail is Daniel [email protected] and my other Gmail is Danielle [email protected] I would like to talk with you more about things that are going on for me and learn some more from you that could help me July 11, 2019 Reply Cristina Wentz This is very interesting. Do you ever get dizzy??? July 12, 2019 Reply Experiment Made for you Anyone can understand that you are blind by seeing your pupil in your eyes is not stable compared to 'sighties'… July 14, 2019 Reply Alisson Von Der Lane … I was wondering… I guess cataract would take away what you still see …?!? 🤔 July 15, 2019 Reply Mrs. Serendipitous The concept of zero depth perception is so insane to me. I tried googling images of or videos to simulate that but found nothing. July 16, 2019 Reply Tara Wright It's sad that so many people weigh the potential discomfort of being caught having believing something that later is found out to be a lie as much more serious than the real emotional distress which they could inflict on someone by publicly accusing then of being a fake and a liar when they absolutely are not. Those people are what we call children. Sure, a few of them may be trapped inside the bodies of fully grown adults, but they are in fact, children in every way that truly matters.As with all children, we need to try to be patient and understanding of their mental limitations and just do our best to help them learn and mature if they are willing to accept help. July 17, 2019 Reply Michael Neal Is the iwatch only for fashion? July 17, 2019 Reply The Life of little dogs they're momma and tips My biggest question? Is it possible to get a eye transplant? Although I think in some ways being blind could be a blessing. You certainly are a blessing to this world! July 18, 2019 Reply Susan Margaret Wills Your glasses really suit you, only a girlfriend could have helped choose them 4 u! July 19, 2019 Reply Olivia Carpick What's wrong with cataracts? Just wondering. July 20, 2019 Reply ThatIdioticAsian ;3 No hate or anything I’m just confused why you have glasses on but ur amazing and love ya! July 20, 2019 Reply Canadian_Service_Hank 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! July 21, 2019 Reply Kayla Tuite Not blind, but I do have nystagmus with low vision! I appreciate you sharing your journey. July 22, 2019 Reply Courtney Pie every time you say "pot lights" i thought you meant weed growing lights heheeeeeeeeeee July 22, 2019 Reply Cara This is super interesting!!! Thank you for making this July 22, 2019 Reply Tina Rawlins Molly, my friend needs $6,000 contacts to see. Any suggestions on non-profits that can help him get these very expensive contacts? July 22, 2019 Reply MoonlitxAngel 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. July 23, 2019 Reply TheSophiecocktail The music in the background… its distracting July 24, 2019 Reply Lauren Dyer 2019 anyone? July 24, 2019 Reply BangtanSinner I hate the drops for dilate your eyes because they're really uncomfortable but what i really hate the most is when they measure my eye pressure with the ocular tonometry. I need to bite my lips while they put that thing inside of me and then, the light is really brilliant but i'm really photosensitive so it's hard to me to prevent me for sneezing as a reflex. I do, the majority of the test eyes that you have talked but because I was operated from my eyes, and they need to check me every 3 months to see my reaction and to prevent my retinas from develop another thing. The test are super annoying for me, because i can't endure the lights, but I'm glad I'm not the only one who feel uncomfortable. Watching you made me realize that we are not alone in this world and i love listening to your positive attitude and helpful tips. July 24, 2019 Reply Michelle Tusek I have rp and had bad cataracts and had them removed and in my left eye I couldn't see anything at all and now I can see out of that eye. It improved my vision. July 25, 2019 Reply k1e1v1i1n Do you live in the US but come home to Canada for health care ? July 25, 2019 Reply Pien Pakvis With the glasses on and the ballerina bun, you resemble actress Demi Moore. July 27, 2019 Reply Hullo There I love doing that swirly thing with my eyes. It's really cool. Especially when I'm tired;) July 28, 2019 Reply leo nie I'm praying for you!❤🌟🙏 July 28, 2019 Reply Dwayne Dryden Is it just me or does her eyes vibrate alot July 29, 2019 Reply greg rafieck What is your vision? July 29, 2019 Reply Cayden So if you stand in front of the mirror with light behind you, could you see your silhouette? July 31, 2019 Reply Juan Mendoza Hi melody is Juan you are so awesome and inspiring July 31, 2019 Reply Catalina Aristizabal ‼️‼️‼️So You can see, a little bit but you still do. I really thought you were totally blind because the way you talk about blindness is like you can’t see anything… I guess that is the reason why many people says that you are faking. And to be honest, I’m feeling a little bit defrauded. July 31, 2019 Reply Spencer Lauren I’d love a video where you did a day in the life and just described everything that you saw all day.. so fascinating! August 1, 2019 Reply Fy Andriamasinoro i'm surrely incultured and that quesion may be idiot but how can you see your text messages? and write tweet? August 2, 2019 Reply Anna Alexander 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. August 3, 2019 Reply Kristin Baylor Those glasses look really good on you! August 3, 2019 Reply Tomorrow is Yesterday ok August 3, 2019 Reply Samantha Gooden Omg I feel so bad! A blind person asked me out and I said "sorry,im seeing someone "!! 😞 August 4, 2019 Reply fluffcloudpuppy ?? August 4, 2019 Reply jourdan p Thank you for doing this channel. I am now disabled and I love everything u stand for. August 6, 2019 Reply LindsAy with Attitude This is years old but in my recommended. Glad i watched! August 9, 2019 Reply Do The Do Doctor: "Don't move your eye"Molly: Well shit August 9, 2019 Reply Emma And Maggie neon is the word lol August 10, 2019 Reply Justicescales123 Glad I watched this video as I was confused in another video when you stated you use your unicorn night light to guide you at night to the bathroom. August 10, 2019 Reply Jay Paans I don't have death-perception either, and I'd rather not get in debt with you.Sorry, couldn't help it 😛 August 10, 2019 Reply Annabel Chapman Why r u wearing glasses if ur blind? August 12, 2019 Reply Abigail's Corner Do you sleep with the lights on? August 14, 2019 Reply reedlawrencej I know this is a bit late. Lol. Just going over the vids you suggested, i'm a new subcriber from dr mike. When you talked about seeing the streaks of color, i could picture that. It happens to me when i go from a bright area to a pitch black area. I see colrs zoom around my vision. I wonder if it is the same for you because you do see light. August 14, 2019 Reply Orchid Malevolence She kinds look like Natalia Starr lol August 17, 2019 Reply Tearsa -Weirdo I am 14 currently and my vision has been bad since I was 7 or 8 and I have had glasses in 2nd grade till now I have 20/70 vision and so far none of my glasses give me 20/20 vision they say having glasses will help but so far my vision is just getting worse I’m glad I can atleast see but it is blurry I have panic attacks, anxiety and depression I wish I could see clear again but I still feel lucky that I can atleast see August 22, 2019 Reply misseyennis Just found this video, wow you explained that August 23, 2019 Reply JoysFavoriteThings 2019-08-24, wow, you did a great job at describing what you see, about which I was indeed curious. Very interesting, and edifying. Thank you for your effort and explanation! August 24, 2019 Reply JoysFavoriteThings 2019-08-24, In response to what you shared near the end of this video, about people on YT accusing you of not really being blind (based on… what???), these two quotes seem most apropos:"There is a principle which is a bar against all information, which is proof against all arguments and which cannot fail to keep man in everlasting ignorance ~ that principle is Contempt Prior To Investigation." ~Herbert Spencer “Condemnation without investigation is the height of ignorance.”~ Albert Einstein August 24, 2019 Reply Ann Taylor Wiseman You say there’s no such thing as “looking blind” but I will disagree. Some blind people have very obvious eye differences, like bluish haze that is clearly blocking their vision. Or the size of their eyes, or even missing eyes are obvious. Also, people who have been blind from birth often have different mannerisms, since they have not seen the social cues that sighted people use when interacting with the world. Like looking at the person who is talking; blind-from-birth people often don’t do this. They generally keep their heads facing forward and slightly down often. Also, their facial expressions when talking are often less, again (I’m guessing) since they don’t realize that sighted people use them quite a bit to help convey their emotions as they speak. So, yes, there certainly are people who “look blind”. August 27, 2019 Reply funny vines So how did she put on her makeup on August 28, 2019 Reply Okkin Flow Wow, what a dark dreadful concept, losing what you have, slowly slipping into dark.You should write poetry. August 29, 2019 Reply phoenixmoon3 With the little vision that you have, is that why you accessorize so well? It’s driving me crazy how well your hair looks and how awesomely u accessorize. I love you know how to do make up. Girl I can’t even do make up and I have one eye. I do try. So inspirational LOL. XOXO September 6, 2019 Reply Jeremy Fish To back Molly's point. No one knows I'm visually impaired unless I'm using my cane. And hopefully a guide dog soon! Thanks Molly!! September 7, 2019 Reply Jenny Böjeryd Am I wrong, or does proper glasses not reflect things like the ring light? Or, real glasses makes the flash green. September 8, 2019 Reply Katiee Gloria Omg Molly you have changed so much!!! 2019💕 I love you!! September 9, 2019 Reply mynameisjeff Found Ur channel yesterday ..That concert video made me very sad …God bless you September 9, 2019 Reply Rachael Pino Hi Molly, I have been visually impaired all my life, and I also have nystagmus. I do not have RP, so of course what I see is different, but it is great to hear you describing your vision. It is interesting to me, because I have always had a hard time trying to describe what I saw/didn't see, and how my vision. is dependent on a situation. September 10, 2019 Reply Meredith Hemphill I would love a VR game that simulates the vision patterns of the blind who still have some vision left. I think that would really help us sighted people understand your world. I have "fireworks" too, because I have chronic migraines. Mine are usually pink or blue. I've never known anyone else to experience the same thing. September 10, 2019 Reply Julie Carriker All my life I've tried to explain to people what I can and can't see, but never with as much success as you just did. I even have three other low vision people in my family but we don't really know how the others see. It's SO hard to explain! And wow! I don't know that I've ever had anyone talk about having nystagmus before! I have it too! September 11, 2019 Reply Dijana Micic Safari Duha 🙏 September 11, 2019 Reply Mr. Nugget How did she write the title September 12, 2019 Reply Granmama K Thank you Molly September 15, 2019 Reply Kelvin Atkinson Yes Everybody that has RP their Journey is Different but we do Experience some of the same things with our Vision 😎👍 September 17, 2019 Reply Kelvin Atkinson People who are not blind would never understand until they get Educated about Retnitis Pigmentosa. Definitely before they start making Nasty Comments PLEASE Do your Home work and get Educated… The mind is a terrible thing to waste.. PLEASE Do your research.Yes I'm part of the RP Community With all do Respect !!! Thank You.. 😎👍 September 17, 2019 Reply HotGlassHam Those making the nasty comments are truly showing their ignorance. If they understood what blindness is, they would not be saying such things. One way I think would change their concept of blindness, would to have to wear something that would simulate the effects of going blind with no way for that person to remove the equipment themselves. starting at the beginning at the onset to total blindness over a period of perhaps a week. That experience should make believers out of them. As for Me, I'll say keep up the good work. September 18, 2019 Reply Zero Waste Wiltshire If they are not going to treat the cateracts why bother checking for them? September 18, 2019 Reply Felipe Najera https://www.facebook.com/cientificomarioncamacho/videos/1615588898457494?sfns=mo There is regenerative proces not Just for Macular degeneration but Also for Retinitis pigmentosa optic Nerves and other organs. September 19, 2019 Reply Felipe Najera https://www.facebook.com/cientificomarioncamacho/videos/2038217656194614/ Stem cell aplicación for sectioned optic nerve September 19, 2019 Reply Potato Corn I know ocular albinism (what i have) everyone who has it has different journeys September 22, 2019 Reply Add a Comment Cancel reply Your email address will not be published. Required fields are marked *Comment Save my name, email, and website in this browser for the next time I comment.