This Is How My Eye Appointments Go…
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- Опубликовано: 10 сен 2024
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Talking to my eye specialist about my vision: • Talking to My Eye Spec...
This is what I really see: • I'm Blind, This is Wha...
Scientist explains my eye disease: • A Scientist Explains M...
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I'm Molly, a typical sushi, makeup, and fashion loving millennial girl who just so happens to be blind! I was diagnosed with Retinitis Pigmentosa at just 4 years old and began public speaking at age 5. I started just doing motivational speaking, but now I make videos and even model! Even though I can’t see, I know that there are bright spots in everything we face. Let’s find them together. 💕
How often do you go for an eye checkup?
Molly Burke once a year!
Molly Burke every 6 months
Molly Burke I haven’t in 3 years eaith GUILTY!! ILYSM
What would you wanna see if you had the option to see one thing in the world? Just wondering
I have to go every 6 months for a check up bc I have a retinal detachment on my left eye
"I am not the problem. It's not my fault that I am blind. And life wouldn't necessarily be better if I was sighted. Life would be better if the world was made accessible. And that's what's important is that the world is not accessible, not that I am blind."
This is such an important message, Molly. And, as a woman with a disability (born with spina bifida and hydrocephalus and a wheelchair user), I appreciate this message so much. Thank you for your videos.
Katie Schmidt Hey, another person with the same disease as me. I was born with hydrocephalus as well. I was born fully cited, and then they found out I had hydrocephalus, so they put a shunt in my head. Which in turn, the hydrocephalus damaged my optic nerve, so I have optic nerve atrophy. Thank God that’s the only thing wrong with me. i’ve learned to deal with it though. It’s the only life I’ve got, so why waste time complaining about it? You know what I mean? I do have my moments where I wish I could get my site back though somehow, but I know that will never happen. I mean, (and not to sound mean), but if you say that you don’t wish you had your site back, in my book, you’re lying. Everyone has that thought hidden in the back of their head at least, for a little while you know? I mean, I do. at the same time though, as I said before, I am glad to have the life I do.
TLDR:
Don’t waste your time complaining. It’s not worth it.
omg i read this comment RIGHT when molly said it
I have spina bifida too!!
Katie I also have Spina Bifida and Hydrocephalus. I agree with you that this needs to be spread
I also have spina bifida and am a wheelchair user. I really wish there were more easily available information for people with disabilities on top of community resources and accessibility
“My retinas are getting their school photos.” -Molly Burke, 2019
Olivia Petrowski 1k like hehe
Olivia Petrowski lol
I'm at high risk of having a detachted retnia which is also rare because the line is so thin that holds my retnia so I can't see at night or dim lighting but I can see clearly during the day
Abbey Awesome101 :( oh no when I was a baby my retinas ditatched I had to get laser eye surgery to fix my eyes both the eyes healed but my left eye is blurry it doesn’t focus so my Brian goes to my right eye cause the vision is clear. Just remember that we’re here for you❤️
@@abbeyawesome1012 ok who asked?
Molly never wearing her seatbelt properly or at all is forever giving me anxiety.
in some areas the law doesn't require that adults over a certain age wear a seatbelt in the backseat. not sure if it applies in canada, but that could be why she doesn't
@@marisskat that may be the case but the difference in law isn't going to save your life in an accident. Seatbelts are an absolute necessity. It's just fact.
@@marisskat The law of kinetic energy applies in all states
Backseat passengers without a seatbelt also ram into the seat in front of them during the crash and shove the person in feont of thwm into the steeringwheel/dash/airbag, which usually ends up killing the person
@@marisskat nope, in Canada you need to wear one :)
I just got diagnosed with RP a few months ago, at the age of 26. My sister and I have been watching a bunch of the videos on this channel to kind of know what to expect. It's making things a little less scary, so thanks for putting your videos out there and generally being awesome.
I'd have thought that one of the advantages of being blind would be getting to skip going to the eye doctor. This was very educational.
Tosh Omni Even if you are blind it’s still a good idea to go to the eye doctor and get your eyes checked every year because you never know what other problems could develop I did a video about getting your vision checked every year and I tell all my friends and my family and a reply to comments and letting people know it’s a good idea to do that don’t take your vision for granted
Lmao nooo
You still have to go to the eye doctor, and you’d probably have to go more often xD
Yeah total advantage I guess? 🤔
1995 I had a tumor behind my right eye. The tumor was in the eye socket bulging my eye. But it wasn’t noticeable unless you knew. The only reason it was found I got a MRI
After loosing my eye I kept a good Sense of humor. I thought going to eye doctor appointments I should get 1/2 off since there only checking one eye. And of course not but it does make perfect sense.
ig if you're COMPLETELY blind but molly can see light and stuff so who knows 😂 ive never been,,,i get tested at school at i can read the lines at the very botttom and i never finish the second half of the test
Can you show a photo of your eye and a “healthy” eye so we can see the difference? Very curious to know what your disease looks like.
Google “healthy retina” or “normal retina” in images, and then “retinitis pigmentosa,” Molly’s condition. You’ll notice retinas look very pink, much like salmon, RP have grey, usually more in the outer areas. Molly’s have essentially no clear pink left, very grey throughout with a thin appearance. When she has said her RP is one of the more severe, she is not kidding. This is the first time she has posted photos afaik.
I would also add that it seems like there are way more black/dark spots around the outer edges in Molly's pictures
Jacqui Davis yeah, I have never seen that before and I’ve seen plenty of different things with eyes (ex-optical assistant)
alsn clre she has a rare severe form of retinitis pigmentosis
here's a link for how retinas with RP looks:
www.google.com/search?q=retinitis+pigmentosa+retina&rlz=1CAXGER_enUS725US725&sxsrf=ACYBGNQxnyV7PI9OYRezM__gNWU0rL71aw:1573698349135&source=lnms&tbm=isch&sa=X&ved=0ahUKEwisndWY0-jlAhWDoJ4KHY2KCm0Q_AUIEigB&biw=1517&bih=853#imgdii=yVDQboaGlTcLjM:&imgrc=qeuqJrpLLPOUdM:
and here is a healthy retina without RP:
www.google.com/search?q=healthy+retina&rlz=1CAXGER_enUS725US725&sxsrf=ACYBGNTkgedMjUu-DIHZgZyqEFoGF2RuPA:1573698519442&source=lnms&tbm=isch&sa=X&ved=0ahUKEwjFjfDp0-jlAhXDjp4KHYVxAtAQ_AUIEigB&biw=1517&bih=853#imgrc=RNJnPadFyI1NJM:
sorry about such a long link, youtube didn't let me condense it or change it so i could say *here* is a healthy retina and *here* is a retina with RP
I used to be a sign language interpreter. Many deaf people feel the same as you do - the emphasis from healthcare professionals shouldn’t be on “disease” and “cure” - but on what can be achieved when the world is accessible. We all need to advocate for accessibility.
This is the argument many forget when they ask why there are parts of the deaf community against Cochlear implants. It's not about rejecting a thing that could help them (even though the surgery can be extremely dangerous). It's about the idea that they should be more able to access the world around them. Not be forced to fit into the world with things out of their control.
Aww, I love this! I feel the same way about mental illness.
@@ecamiran4004 I have a cochlear implant after losing my hearing after two bone marrow aspirations 12 yrs ago. The surgery actually is not that dangerous but if I didn't have my cochlear implant I would be lost needing to make phone calls and deal with the public (I don't have family or friends they ran when I ended up deaf) and I can take off my cochlear when I want silence. I really think people are uneducated about cochlear as you can have the best of both worlds.
Bree Phoenix my partner has been deaf from birth and has a cochlear and still can’t make phone calls as of yet.
I always make a massive fuss on the phone if I have to phone for him saying they need to improve their accessibility. Banks won’t let you unblock your card without phoning them.
@@rebeccas2801 I wasn't born deaf I lost my hearing at 26 after two bone marrow aspirations unexpectedly so I can't even imagine having to learn everything as an adult. Has your boyfriend tried relay phone, I'm in Australia and he can speak into the phone peice and the words of the person talking in the other end of the phone (e.g. the bank) will come up on a screen for him. Im in Australia. I personally don't need it as I was only without hearing for a few yrs but even with my cochlear it's extremely difficult to hear on the phone and on iPad's, tablets etc and I use closed captions with those items and tv. If you would like to know about relay just let me know and I'm on Instagram @breezyphoenix. Your boyfriend is really lucky to have and he can also put you down as his carer/guardian which means you can deal.with his banks accounts, phone accounts but it's good for him to be able to do it himself. I really think relay phone would be great for him babe xx
I’m going for my annual appointment soon and I know my vision has gotten so much worse😲😵. This helped me so much just knowing people go through this like I do. I’m not blind, I have cone rod dystrophy but this calmed my nerves. Love you Molly, you’re so inspirational!☺️☺️☺️
Emily N you got a heart from Molly! Good for you!!!
Willow Hobbs IKR SHES MY IDOL I SCREAMED AND FELL OFF MY BED WHEN I SAW AHHHH! I love you Molly keep up the good work! You’re such an inspiration to me and everyone, this has really helped with coping with my vision impairment. Lots of love!
Thanks for sharing your story I'm not blind neither however I asked my eye doctor once on a scale from 1 to 10 how bad my eyes were and he wouldn't answer me n there's always a possibility that they will get worse without my glasses I can't see anything and I'll have trouble in the shower and stuff so makes me feel good to hear her story is well
Seeing that semicolon tattoo behind your ear, really hit me in the heart.
Why? I only know of missing semicolons in programming. Probably not the same meaning here... So genuinly wondering what her tattoo means.
@@meltm1245 the semicolon is a metaphor for suicide prevention. the gist being that in grammar, a semicolon is used when you could've ended a sentence, but didn't. it has meaning to people who have considered or attempted suicide, but didn't go through with it / succeed.
@@sidiot my mom wants us to get matching semicolon tattoos. She's been suicidal in the past and so have I, but we keep pushing each other to nvr give up and to keep moving forward.
I thought it was an earring. I put a semicolon on my wrist everyday because of the depression I went though in the past
This is very poignant. I'm not blind but I'm being treated for depression and can be triggered by events or what I read or see. I'm not sure why I decided to give one of your videos a watch but thumbs up and subscription is coming your way. I admire your's and your mom's strength.
My eyes started watering in sympathy when she got her eyes dilated
Abby Miller why?
@@Claudia-mz3yp those eye drops sting like hell
Omg I get that too! When someone’s eyes look irritated or painful mine start to water lol
The eyedrops aren't that bad in my case... the worst part is the doctor flashing light directly into your dilated eye.
same!
Molly: “do I have a beautiful eye”
Doctor: “such a nice photo”
that killed me
lol as a fellow health care provider who frequently misses social cues, there has never been a moment in a youtube video I've related to more.
It’s because her retina clearly shows retinitis pigmentosa (and severe at that), so it seems strange to say that something causing her blindness as a “nice eye”
The last thing doctors are thinking about is aesthetics since they are so focused on what is healthy or useful for them to diagnose things.
Honestly, as a person that takes OCT and retinal pictures every day, I always appreciate the quality of the image since it can be so difficult. Like damn, look at that sharp OCT, there's no graininess, it actually took a nice scan, and that can sometimes take a while, especially if the eye isn't still.
“My retinas are getting their school photos” ❤️
I legit thought you were gonna be like, "by the way this video is sponsored by audible" right in front of the healthcare professional.
Alpacalaca I was waiting for it. Maybe I’m just used to Jenna and Julien’s podcast. 😂
My brain made up a funny situation when I read the Title.
The eye doctor: "what's the smallest line you can read?"
Molly: "no"
Oof
Right!
I told him, " I know there is a big E, I see the white & black. "
I have had that exact conversation. My vision is just bad. I'm not blind though. But the nurse who was giving me the test just laughed. When she asked me what the biggest letter I could read I said "I know from past experience the first letter is E. I can't actually read it though" she just told me to put my glasses back on.
@@clexis14 mood
Hearing Molly talk about cure-based talk was really interesting. It is important to make the world accessible to all kinds of people.
Molly: gallop you’re next to get your retinas done!
Me: *works in a veterinary office alongside a veterinary ophthalmologist that does retina surgery on dogs*
very cool job! :-)
Hahaha the irony 😂
Sounds like a cool job!
Destiny Zero eyerony
@@leahwalker2557 😂😂 dad, is that you?
And?
"Life would be better if the world were made accessible" as a disabled person this almost made me cry.
When they put the eye patches on you, I was instantly brought back to my childhood. I was born with two lazy eyes. When I was very young I wore an eye patch to correct it. We'd just rotate which eye we put it on each day. My Mom always let me pick out a sticker to put on top of it so I'd be okay with wearing it.
gelasjams aw that’s sweet
Me too I Got to choose stickers I only used them at night cant remember why lol
I still have my slight lazy eye. We tried the patches when i was a child but they never worked for me.
@@nikkianna4591 mine will turn in if I stand too close to a mirror without my glasses on so I can see to do my makeup. Or sometimes just ever so slightly, like barely noticable, turn in for no reason. I'm just lucky I didn't need surgery.
My eye patches were already decorated when I had them which was cool
Honestly being in a dark room listening to an audio book with a Starbucks in hand just relaxing would be great
It would be relaxing if I don’t get really anxious knowing that the audiobook will take at least 12 hours to finish. My ADHD brain can’t cope with that.😂
i love hearing molly's mom talking. I love a good ol irish accent
It’s Irish? I noticed her accent when she says some words, but I didn’t know I what kind of accent it was.
Yes and Burke is an Irish name
The part about not focusing on a "cure based community" resonated sooooo much to me because when I was diagnosed at 19 with a incurable blood disorder, I felt hopeless and broken. Such disappointment each time I went to the doctor and there was no answer for myself and my family. Thank you for taking the time to share your thoughts on health and mindset.
ever since following Molly, I learned so much about the community and I'm so happy to be learning so much. Thank you, Molly for being such an inspiration to me and everyone else! :,)
6:30 “so you guys probably Can’t see anything since the room is dark, so we’re in the same boat now“
I adore your humor.
Nobody:
Not a single soul:
Molly’s intro: 👁👄👁
Cameryn Lapointe stolen
Nobody:
Not a single soul:
One commenter under every Molly video : Molly's Intro 👁️👄👁️
Hahahahahaha so funny 👁👄👁
木 Sakura Edits I don’t watch a ton of Molly’s videos and I only seen that other people were posting this same comment after I posted it lol
Cameryn Lapointe stolennnn
Ok, you’re right, I should book a checkup soon too.
Here's a little reminder in case you haven't booked it! Hope everything goes well💗💗
Molly wear ur seatbelt!!! >:(
@@annikabrunelli8553 Probably isn't the best habit, but I also don't wear a seatbelt unless i'm in the front. Don't know why but I guess my parents never really corrected it?
@@Lisa_Flowers then please correct that yourself! Please wear your seatbelt!
I wrote a whole letter in the comments about wearing your selt belt. Now I see that other viewers were bothered by the sight of Molly not wearing one. I feel relieved.
Seat belts can be uncomfortable when you are petite because they rub against your neck. Nevertheless, the amount of times seat belts save a life every day, you should even think twice about being a bit uncomfortable.
Not only might it save your own life. If you don't wear one, your body is just unsecured cargo getting thrown around in the car. You might harm your passengers. That's not only horrible for them, it might also take your toll on your mental health knowing you seriously injured, disabled or killed friends or family travelling with you.
@@tarananajaika seat belts are uncomfortable even if you're not petite. But there are all kinds of things you can use to move the top belt down so there's less of a chance of it rubbing up against your neck. In fact, I need to get something like that
I bring a shoulder pad thing that attaches to the seat belt to stop it from chafing my neck.
I love doctors like these. When it's a personal relationship. It's professional but with such an amazing personal touch. I totally love it. ♥
“so you guys probably can’t see anything cause this room is dark, so we’re in the same boat now” Hahahahah
“My retinas are taking their school photos today.” Molly’s the cutest I swear ❤️🥰😍
It had been 7 years since I had got an exam, 7 years using the same prescription. I failed to go because, well I became an adult and I was too scared. I finally went a few months ago, yay me. I can finally see and no more migraines!
Molly: Do I have a beautiful eyeee
Doctor: It’s so.. it’s such a nice photo..
such a romantic doctor, told her she has the most beautiful e... I mean nice photo 🥰
If your eyes the window to your soul, you'll always have beautiful eyes regardless of your vision.
came to comment this myself. glad im not the only one who noticed lol
Its fascinating to eye specialists! It is a really Nice photo but unfortunatly the peripheral area is necrotic
I did every test you did and more this year too (twice) omg, my doctors can’t find my diagnosis yet but you give me such calm and peace because even though my eyesight is rapidly decreasing I have hope that whatever happens, everything is going to be ok. 💕
So interesting that you get "freezing drops" prior to the dialating ones
Here in germany we only get the dialating ones and have to deal with it 🙈
I think that the freezing ones are only for super bad nistagmis because I’ll get them on days that my eyes twitch really bad but sometimes it’s fine with just the dilating ones
They always give me freezing drops in America.
We only get dilating drops in the UK too.
Never heard of freezing drops, I’m in California
@@gemmaanderson1202 I'm in the UK get the numbing drops every time as well as the dilating ones. Maybe it depends what they're doing? My eye gets touched a fair bit during my tests so its necessary
Everyone 2 years ago: “phhhhhtttt she’s not actually blind.
Molly: makes a video in a eye clinic
People now : Pikachu meme
It just confuses me how she can look directly at the camera with out seeing the lense
alexis elms I assume there is a light above the camera, and since she can see light, it's not that difficult. Also, people get confused when she is able to make eye contact, but you know, it's not that hard either considering that she basically knows where the person is since she can hear them talk
@@thesalazar7328 didn't think of that, but that's awesome. Thanks!
@@alexiselms7838 it's because there's a ring light on the top of the camera and she has light perception
Molly has gone through so much. I'm glad that now she feels better about herself.
I have autism and Molly’s videos always makes me feel so empowered.
I'm autistic as well but never feel empowered...
Leah Faye im so happy to hear that ❤️ you go girl! 🎀
🤗
I have autism disorder too and don't have friends but on the worse I've been bullied my entire life i have trust issues now that I'm in 11 grade I have no friends and I'm getting discriminated for my disorder too though
@@anakinskywalker3339 I can be your friend
I just recently went ffor a checkup and new glasses prescription and my eyes have reached a -11 diopter, which is really bad. Basically I cant see clearly more than bout 2 inches from my face without glasses. Well apparently now I am in the danger zone where I have a moderate risk of retinal detachment occurring. Videos from you and you being so inspiring helps calm my fears of going blind one day
@@bluealef I have a +8 and i go regularly every year, I used to wear contacts and it actually helped my prescription went to a +7 and +6 but I stopped wearing contacts for 3 years and my vision got worse. I'm back to wearing my contacts again though so hopefully my vision gets better again
@@bluealef Same, now I'm thinking I should make an appointment. No one ever told me about possible risks from having severe myopia :/
For what it's worth, if you wear contacts and have vision insurance, you can file for "medically necessary" lenses as opposed to cosmetic. They should be almost fully covered so you won't have to pay out of pocket. Especially useful if you have toric or some sort of XR lens :)
@@bluealef I'm a -8 too and I am at risk of retinae detachment. You definitely should take appointments once in a while like every 2years. There is a treatment for detachments if you do it soon enough.
(If you see multiple flashing lights while awake, go see a doctor at once.)
Molly 🥺 when you were talking about a cure it totally hit home with me. My boyfriend of 5 years was diagnosed last week with multiple sclerosis. He has a lot of difficulty walking and it gets worse by the day. It really helped me understand the best way to be there for him in accepting his new condition where he may never walk again. Hoping for a cure has keep our hopes higher but I wouldn’t want to get to a point where we’re holding onto that if it may never happen vs being genuinely happy in his new way of living. Thank you 💕
As an almost blind girl, in a very small country and society, its hard to be blind. People dont understand that there is so much I cant see, and I´ve struggled mentally so much for yeats since I lost my vision due to hydrocephalus, but following you here and hearing how to handle it yourself, has helped me so much the past year. I´ve been inspired to do more than what I dared to do before. Your so amazing and such an inspiration for people with all kinds of disability.
I was once told by my ophthalmologist that my retina reminded him of 90s disco music because of my nystagmus... I took it as a compliment
why did I read " pictures of my deceased retina "
Title changed, its still in the thumbnail doe 😗
Vhsvlr so did i
Lmao same
What was the original title
What was the original title
look at the thumbnail, it’s still there lmao
I just wanna say you are one of the most inspiring human beings EVER
Molly: “Do I have a beautiful eye”
Doctor: “Great picture”
I had a kid when i was in kindergarten that had to wear an eye patch and i remember he always had very colourful ones with little images on them
Lol love how your the only 24 year old at a kids hospital getting a check up😂its the cutest thing😂❤
They do this for kids that grow up with they're specialist. I still go to cincinatti children's hopital for my immuneologist
Not Official it has to do with the rarity of her disease and that she’s been going to them since she was a kid
i’m that way too, i have a rare kidney disease and there are only 3 doctors in my state that are qualified to treat it. the non pediatric doctors are about 5 hours away from some so.....
Guys lol I know why I just found it cute that she is the only adult in a kids hospital😂😆 but thanks for explaining❤
My cousin is 18 months older then me I'm almost 24 he still goes to our children's hospital because his diagnosis not many docs know about it like his doc does
Every 3 months I go to the eye doctor. I'm a type 1 diabetic. I've had it for 23 years. So I have a lot of vision problems. My last eye doctors appointment was 2 months ago. I had a tear/cut in my right eye. I couldn't see out of it. It was one of the most terrible things that I've ever gone through! I couldn't go out in the light. It made my whole head hurt! It's better now!! And I can actually see out of it!! Love you Molly! ❤ I really loved this video!!
I love how your doctor made eye contact with you, eventhough you couldn't see that. She must be an amazing doctor!
I feel so much compassion for you. You are living in victory, doing the very best for a person without sight and then reaching beyond and soaring. You are an incredible inspiration. I too try to soar. I was diagnosed with a very rare cancer and after a 17 hour surgery now suffer from post surgical pain. People around me often think I use pain as an excuse or that I am just addicted to pain meds and in denial. Well, that is just not true. How can I show people I am not faking? How can you show people you are not faking? They are not able to experience our bodies from the inside. So glad you did this video. And tell whoever assists you, they have a great sense of style! The very things that make you feel good (clothes, hair, makeup, jewelry) are being used by others to bash you. For every one of the haters, there are a dozen people you are inspiring.
I had a lazy eye as a kid, and had to wear patches. My mom used to draw on them so they were pretty. I had to have surgery twice to fix it
I also have a lazy eye. But I can't fix it because I'm poor asf.
@@emittlame8095 lol
I still have a lazy eye. Both my eyes have been lazy at some point. Ive had 3 sugeries to fix them.it fixed my original lazy eye and then my other went lazy😂
Andrea Wonacott I had surgery for five years ago to have both my eyes corrected because both my eyes were lazy it was hard going through that surgery because I had it done in December and I couldn’t go outside because it was way too cold I could get around a little bit but not really I was confined to the house I wasn’t able to see anything my mom and my dad had to help me do everything because I had stitches in my eyes and my eyes were covered in blood and basically glued shut from the blood. And till Christmas I was able to finally open my eyes so for days it took for my eyes to heal from the surgery
I have lazy eye and I don't fix it because like Hell no, No body touches my eyes. I ain't going Blind today Satan.
Get your eyes checked kids! I was 24 when my retinas spontaneously detached. After six surgeries I ended up losing everything in one eye. Your vision is important!
Omg!
Oh my gosh! did you ever find out what caused it? I am genuinely concerned about that happening to me, I have EDS, which is a connective tissue disorder, and many people with this disorder have detatchments and subluxations of their retinas and lenses, so it's concerning, and I already have to go to the eye doctor ( and a ton of other ones) more frequently because of my disorder
What the heck.
WHAT. I’m 23 and my eyes seem to be rejecting contact lenses which I’ve worn since I was 14. I’m worried something’s going on. What happened to your retinas??
Im Deaf with cochlear on one ear, I'm not blind so I only have my eyes tested by my optometrist if I feel I need stronger glasses
Why did I mentally FEEL the drops going into MY eyes?
Jadyn Pattison me
Wow, what you said about being sighted vs being blind in an inaccessible world is so profound! I have a chronic condition that I recently have been cured of. I feel really lucky b/c cures are just developing. But I was so desperate for a cure because I felt I couldn't survive in the world as it is with my condition! I'm only now realizing the bottom line cause for that feeling was inaccessibility to care I needed, to the world, and the life I wanted to live. Thank you for helping me realize that I'm not the problem.
I know this is an old video by now, but just wanted to say: seeing you advocate for patient wellbeing directly to medical personnel makes me emotional. I wish I could be as brave as you are and feel confident enough to give feedback to doctors directly to try to make things better for others with similar medical experiences. Thank you for being a role model Molly ❤
When my sister was a kid, my parents and her were at lunch at long john silvers. They didnt know that she had touched some form of a hot pepper. She rubbed her eyes then started screaming. My dad figured out what had happened and snatched her and ran her into the bathroom and started rinsing her eyes and e everyone in LJS thought my dad was abusing her and called the cops 😂😂😂 I wasnt born yet but I totally would have loved to have seen that 😂😂😂 oh yeah.... you are so incredibly wise and your insight is so amazing!!!! You're an amazing motivational speaker!
These types of videos are so interesting to me over the past couple of the years my dad has had a lot of different eye surgeries on his left eye and some minor ones on his right one and he is now mostly blind in his left eye. He went through laser eye surgeries and open eye surgeries and he also had a detached retina and honestly he went through it all and didn’t complain and that makes him one of my heroes and seeing you molly also managing to have a good life while having your eye problems also makes you one of my heroes you inspire me every single day and I just want to say I appreciate you so much and everything you do ❤️
You have such a relaxing voice
What you said about finding a cure, and accepting yourself was so powerful.
I watched this video when it first came out and was so excited to learn about your condition. Now after my first year of optometry school I love being able to know all the tests going on and follow along. Watching your experience helps me to be a better doctor in the future 💙
To say that your life wouldn't be better because of a cure, that it would be better if the world was more accessible... that was so eloquent. I'm not crying, you're crying. Love you Molly ❤️
I really enjoyed this episode, as I am an Optometry student. I am glad that you feel more comfortable with your vision state now and that you are still able to enjoy daily life with the vision you have left.
I immediately clicked on this video when it popped up!!! I love watching your videos and learning so much about the blind community. It is fascinating to me.
I felt every drop and my eyes started tearing just watching you wipe off drops... worst feeling ever
Do you have mirror touch synesthesia?
I went to the eye doctor the other day i go yearly and now im legally blind with the possibility of going blind :
being a visually impaired person who needs their eyes to be dilated at every appointment my eyes had PTSD watching you get yours dilated-
Ikr same
Please don’t make light of PTSD. It’s a serious neurological condition that affects every single aspect of traumatized people’s lives, not a bad feeling you get because you don’t like something.
Yes but how do you know they DONT have ptsd?
@@sarahdoe6945 sorry to offend you :( I do actually have PTSD but I probably shouldnt have used it as a joke in my comment. my apologies!
@@sarahdoe6945 you don't know what random people have or don't have
When I was a kid I remember having to ware eye patches because I had a lazy eye and it kinda fixed it but now my eyes don’t combine what they see into one picture, therefore I have no depth perception.
Sarah F me too
I never had to wear eye patches but my brain connections got messed up. So I don't have depth perception. I did VT but it only really trained me to use monocular clues to allow me to drive and go about daily life
Same here
I had to wear a patch to when I was a kid i have a lazy eye too but the patch also fixed mine my left eye is lazy
I ironically got an add for “See” before this video.
C Ray I'm getting a lot of glasses ot eye surgery promising to fix your eyes.
RUclips isn't the most sensitive :D.
I’m early again!!
I’m not blind, but you are still such a big inspiration to me about positivity and happiness and fashion as well. Thanks, Molly!!
Thank you for showing this. I unfortunately became disabled due to medical negligence and since then I've never managed to be calm around doctors, or build a relationship. Seeing how kind your doctors are, and how comfortable you are around them is good to see. One day I can be the same
“It’s not my fault that I am blind”
Why am I crying?
I just got my eyes checked for the second time this year a week or so ago. I was born with a rare child eye tumor called Lymphangioma. I have the orbital type if anyone even knows what tumor I’m referring to. I finally upgrade to an adult doctor because my eye sight has been doing well and my tumor is benign. I’ve been going to the children’s hospital since I was a baby. My tumor goes into my cheek as well. I’ve never been able to talk about this part of me because I felt ashamed of it. I have a small eye and a normal size eye. I have visible tumor fat around my pupil. Over the last 2 years I’ve grown and been able to talk about this “unique” side of me. I essentially use one eye but I do have some vision in the tumor eye. The new doctor actually was impressed with my vision in that eye and told me it was because of the patches and follow doctors orders as a kid. So please if you’re dealing with patches don’t be stubborn! It makes a difference well in my case it did. I have to go to the doctor once a year to get checked because my vision changes yearly. It’s interesting reading about everybody else’s eye problems! I have yet to find someone with my tumor though! Maybe one day. I had my surgeries all at 2yrs old. I have a metal rod holding my eye lid up and had my tumor debulked from eye. I do still have flare ups but not as bad anymore! (Flare ups = eye bleeding into itself and/or swelling due to allergies, sickness or stress). I’m so glad I found Molly’s channel and thank you for showing your life to the world
I like that the ad before this video is for “See”
Molly what you said about a cure is so powerful. I lost my right field of vision in both eyes in 2002 due to a stroke. When I let myself get stuck on the idea that there could be a cure or something that improves my visio I can get super depressed. Thank you for the reminder and encouragement.
My fiancé has RP and I am coming with him for the first time to his eye appointment this weekend. I’m very nervous to find out if his eyes have gotten worse. I know it really scares him. Watching your videos help me understand a fraction of what he is going through. You help and inspire so many people. So thank you! 💛🐝
I’m an LCSW and work with patients who have neuromuscular conditions. These are typically not curable. Many organizations put a lot of focus on a cure. I absolutely love your insight into embracing condition instead of focusing on a cure that my never come! Beautiful.
Well, no one can say Molly isn’t blind anymore since she’s actually been to the eye specialists
I was born blind in my left eye and I patched my right eye until I was 6 years old. I now have partial vision in it, but my right eye has been getting worse over the years as well. When the lady put those patches on your eyes I swear I got the craziest nostalgia! I love this video so much, it’s so crazy to see someone else vlogging something I’ve been doing forever! Thanks Molly!
Emma Duddy I don’t usually respond to comments or anything, but I have almost the exact same vision story as you so I just had to! Only difference is that I was 8 when patching stopped because I was diagnosed a bit late!
Emma Duddy Depending on your diagnosis... please check out vision therapy options. Patching is an old school of thought. Most diagnosis are a two eye problem, so if your patching... the two eyes aren’t allowed to work together. Check out COVD.ORG for more information.
I wish you the best of luck on your vision.
Vanessa Maia Depending on your diagnosis... please check out vision therapy options. Patching is an old school of thought. Most diagnosis are a two eye problem, so if your patching... the two eyes aren’t allowed to work together. Check out COVD.ORG for more information.
I wish you the best of luck on your vision.
Vanessa Maia it’s so cool finding people with similar stories! I got mine off right before my first day of school and switched to glasses immediately 😛 I wish I’d had those patches with the patterns that Molly linked tho 😂💕
Did anyone else hold their eyes open when she was getting the pictures taken? 😂😂
My name is Melissa, I watched one of your guide dog videos because I have my first guide dog at 65. My sister is 64 we both have RP. We were diagnosed in our 30's. You are very encouraging, thank you for sharing.
I am a nurse and I work with many different doctors. I must say, your MD is amazing. She has such good bedside manner and seems so accessible. That can be difficult to find with doctors. I was really impressed with her. Thanks for sharing these videos. Your journey is very interesting to learn about and you are doing so much good. Teaching those of us with "normal" vision what it is we take for granted. Thank you!
“I am not the problem. It’s not my fault that I am blind, and life wouldn’t necessarily be better if I was sighted. Life would be better if the world was made accessible.” - Molly Burke
Thank you for speaking out on behalf of not only the mind, but the disabled community as a whole.
Love, Jacob - a wheelchair-user in Michigan.
I'm near sighted, whenever I go to the eye doctor is SO uncomfortable, I can't even imagine what it's life for u omg so many tests
Why is that uncomfortable for you?
Glitter Mafia everytime I go to the doctor I see that I lose more sight
Glitter Mafia at least for me (since I am very short sighted and have anisometropia (bought of my eyes see pretty differently)) it is a little uncomfortable before the test when the sign with all the letters across the room is basically a white smudge (I can see none of the letters 😂) and I am made sit without glasses for an extended period 😂 because my eyes are trying to see through blur in their own way 😂
Also, that stupid puff of air in your eye test is NOT appreciated 😝
The puff of air is definitely everyone’s least favorite part! I don’t know about all optometrists, but our office has a way to get what we need w/o puffs-problem is, you get drops instead. Puff are the lesser of two evils lol!
My left eye take 24 hours to recover from the drops, my right eye takes ten hours. I got in a fight with my eye dr because I refused the drops cuz I didn’t have anyone to drive for me. He was mad but told me next appointment in 2 years he was not gonna agree to skip the drops because he can’t see what he really needs with out the drops. But Christ what is wrong with my eyes and these drops!! I’m always worried these drops are damaging my eyes. And my office is not supportive in believing me and solving the 10-24 hour blindness and headaches that follow these sadistic drops
nobody:
molly burke’s intro: 👁👄👁
RUDE
@@valeschuuil7193 👁👄👁
16:55 i feel this so much.when i was first diagnosed with type 1 diabetes i had this "cure" mentality too when its not going to happen, at least not in my lifetime. i love your soul and thank you for bringing us along to your appointment!!!
I’m so glad you’re posting this video, and I’m so sorry I can’t watch the whole thing, I started crying 9min in because I guess I didn’t realize how emotional it is for me having something wrong with my eyes and not knowing what it is or why.. I’ll have to rewatch this video at a later point. I’ve had to use dilating eye drops every day, twice a day, for about three years, and that’s like the «solution» to my double vision, headaches and massive fatigue. I also had a little bit of vision decrease, but I’m lucky to still have vision (only nearsighted) and I guess I shouldn’t be complaining - I haven’t really been complaining too much I hope, but it’s still hard to deal with. I have never met anyone with the same disease or vision problems as me, and I haven’t been able to meet anyone that could relate to how it is to live with. I had to stop with the drops because of another problem, and seeing double intermittently when you’re not used to seeing double is very hard to live with because my eyes never really adjusts and I can’t grow accustomed to it.. Molly, thank you so much for posting videos, I first discovered your amazing snapchat-stories and I absolutely adore your styles and your hair. Having any sort of vision problems are less scary when you tell us how it is to live as a blind person. I hope this doesn’t sound offensive, english isn’t my first language, I’m really just trying to convey that I appreciate your videos and the snapchat stories helped me through some stuff a while back. Thank you Molly❤️
She is like once on 100000000000000000000000000000 because her disease is so rare and her attitude towards life is soo rare and those combined makes her literally super human and a huge role model towards other people.
I literally just had my last sickkids appointment on Thursday, they are transferring me to the other "adult" hospital lol
I need to go have a eye checkup it’s been years
Me too....I haven't had my eyes checked in seven years....
I've only been once
jasmine Michelle I’ve only had mine when I was idk like 5, I’m 14 😬 also r they expensive bc my family’s kinda broke 🤷♀️
alexxx do you have insurance? usually if you do you get the eye exams covered with co pay
Me too. I was still in highschool when i got my eyes checked last. And i graduated in 2016- cx
This video is the very first time I have ever seen anyone go through some of the experiences I have at an ophthalmologist appointment! I have a very rare genetic disorder that affects my skin, eyes, nails, hair and teeth, and because of it I am unable to tolerate light (it causes extreme eye pain, a condition called photalgia). I loved having my eyes frozen with those drops, because I could see the world without my ever-present very dark sunglasses. Thank you for posting this video - I can now help some of my friends and family better understand what happens when I see the eye specialist! I love all of your videos!
Hey Molly, my name is Paula and I‘m from Germany.
You‘re videos were actually shown to us at university and i think that you‘re soooo inspiring and i just love your videos.
I‘m studying to be a teacher for kids with special needs and i think that i am going to use your videos as inspiration for the kids.
Thanks for being honest about everything and showing sighted people what it is like to be blind.
Love you and greetings from Cologne, Germany 💕
At my last eye appointment they tried to test me for glasses
Uhm I'm completely blind, I don't think that's going to work
@Faith Gingerich I know
They did that do a friend of mines mom to and wouldn't believe her
Wtf? 🤦🏽♀️
I've had similar things happen at my eye Dr. It's like they don't read my chart before they come in to the room?
I’m not that far but the last time a Dr checked my vision without my glasses he did the whole “ok now what do you see” list and I’m just “nope” “nope” “umm 3 lines going horizontally?”
“Ok..”
“That would’ve funny if that was the big E”
“That was the big E”
...
The good news I just tell new Ops that I can’t see the big E so they don’t even try anymore 😂
Doctor: shaking her head no to molly
Me: is she actually gonna say no? because molly can’t see, doctor knows that
Molly can ‘detect’ light. Blindness is not what a lot of people think xD
Yeetus On the fetus yeah but she still can’t see the doctor
@@lukaseldenrust2637 she might be able to perceive the shift in light from the doctors head moving idk. Just throwing random ideas out there
E.J Simas that could also be from nodding tho... plus when I shake my head no the shift in light would be very minimal
@@lukaseldenrust2637 i havent gotten to that part of the video, but if the doctor was in front of a window, i think molly might have been able to see the doctor move her head.
I feel the whole “cure“ thing because I am blind in my right eye and my vision is getting worse and worse in my left eye and I get people saying to me “isn’t there a cure or surgery?” Like. No there isn’t lmao. And I hate that when you tell people something about you they immediately go for a cure thing. I have had people tell me in the future that there could be a cure but like, I doubt it, at least for me because it has to do with my optical nerve not a disease. -_-
just accept the fact that people want to cure things. It's kind of kind for them to want to help. People you regularly hear from will know you better. Don't be mad at anyone I guess :)
My daughter has optic nerve hypoplasia and she's blind in her left eye. Everyone keep telling me how there's different things to make her see in that eye 🤦🏼♀️ someone even asked "did you try glasses?" 🤦🏼♀️
I have fibromyalgia and I get tired of people trying to find me cures, especially when most of them are just gimmicks.
Not blind. But that's how I feel about my tourette syndrome. Everyone e is focused on a cure when sure maybe you could get rid of the tics but you'll probably never be able to change the entire structure of your brain in which tourette syndrome effects. Pretry much every aspect of your brain. Besides I, so controversially, like my tourette syndrome. It's funny. It's fun. It give me a different perspective and a community.
@@brinrin7029 yes!! I have its "sister illness" ME. and the same thing... "have you tried (name of random supplement or therapy)?" im very cautious now. if theres some sort of "get your energy back" seminar where those who attend get such a percentage off of their supplements, nope! Just looking to make money from the desperate and vulnerable. Ill keep my money. if something truly 100% worked it would spread like wildfire. it wouldnt be a room of 40 desperate people... but yeah I totally get you!
I went in today and had these tests done for the first time. It was hard because my eyes are sensitive to light so I did well but also it was uncomfortable.
My daughter was born with a cataract so we have been going to the eye doctor a LOT since she was a few months old. Sometimes I feel like we live at the Ophthalmologist. She's two now. It's so terrifying when you're a brand new mom and you have to rely on a doctor to help your child. I really feel for your mom. It must have been terrifying for her, especially in the beginning. Thank you for sharing this experience.
I was born premature, and therefore legally blind. So I grew up with my condition being stable and I was used to it, as much as you can be. Of course, I was bullied at school but had friends too. I knew not to expect a "cure." But what I wasn't ready for was when my vision got worse around 40, and it's dropped since then. It really freaked me out, privately. I am still adjusting and trying to get through the bureaucratic process to get help, but man is it discouraging, and I am not putting in the effort on it I should be. No matter what I do, my vision won't improve to anything better than my previous level, and as time goes on, my chances get more risky. It is tough to deal with this as someone on his own without enough support. So I can understand how tough it feels and how it can be too tempting to not deal with it, to set it aside and only act on it in spurts. Anyone with low vision and vision loss can surely relate to the private worry / fear we feel, and to how much we react badly to negative things and problems, yet how much we also try to be independent and bluff our way through things. Hmm, and how often people don't get it, whether we present well or not. This tells me I need to get to work on things again and push through to get it done. Thank you, Molly, for sharing, so sighted people might know what it's like and so impaired / blind folks can feel empowered and know more too, and know they (we) are not alone in this stuff.
Hugs same ill be 33 its been tough cause im blind yet use glasses to correct i get where u are coming from
The last time I've seen an eye doctor was when I got my first pair of glasses at 16.
I turned 27 in October.
Well, I actually did visit one 2 years ago but only as emotional support for a friend who managed to get a bit of metal stuck in there at his work and he needed someone to hold his hand.
That red light to the normal light transition killed my eyes
SAME
I got so many feelings by this! I always had horrible eye sight but neglected going because i was afraid of the results. Two years ago i woke up and everything was blurry and turns out both my retinas detached and on top of that, my left eye had a hemorrhage. I had to have surgery on both eyes which took forever to heal. I understand you going into a dark place because i also fell into that. it is ok that we're blind. You're such an inspiration to me.
I have a chronic illness. Well-meaning friends and family often ask if I'm doing/feeling better, if there has been any improvement, etc and it has been frustrating to try and internally reconcile the knowledge of my illness with no cure with their knowledge/thoughts about illnesses. Your phrase 'cure-based community at 17:03 has helped me understand why I've been feeling so frustrated with that; because people with 'good' health are always looking for a medicine, treatment, etc to *cure* something when actually so many illnesses have no cure and must instead be *managed* and *monitored*. Thank you for your words that have helped me cope with and better understand the emotional part of a chronic illness