Hello everyone, I hope you guys are well. It’s Molly here again and as you can see I’ve kind of changed my setup slightly. I’m sitting in front of my couch instead of on my couch. So creative of me. This chair I’m sitting on is a spinny chair so I will try not to spin but I’m sorry if I do. So, today as you can see from the title is an RP update and what I can really see. So, the other day I had my yearly check up at SickKids hospital with my ophthalmologist and I actually ran into one of my best friends there who also has RP and yeah it was just really funny So, I tweeted a picture out and posted on Facebook a photo of my friend and I at SickKids together and asked if you guys would want an RP update. And every single comment was like yes yes do it do it. So here I am filming it. Last Tuesday, I don’t know when this is going to go up, but on the 15th of December I had my yearly checkup with my doctor at SickKids hopsital, wow I am repeating myself a lot. Sorry about that. Basically it turns out that all I needed was some glasses this whole time. Who knew? I could’ve saved myself years of heartache if I had only known. Glasses would have done the trick. I am totally kidding you guys. Obviously these are just $12 fakers from Aldo. They probably have fingerprints all over the lenses, which you can probably see which is probably gross but I can’t see through them so that doesn’t bother me and i don’t even know that it’s there.So I am sorry if that is. No, obviously these are just fake. They don’t do anything. I can’t see through them. I just think that they’re kind of fun to trick people every now and then. So basically a lot of people were wondering you know if I can’t really see much anymore rather than some lights and some shadows why do I still have to go to SickKids and have checkups? Well when you have retinitis pigmentosa, the disease that I have, you are more prone to developing things like cataracts so you have to go, to continue to get checked up to make sure that you aren’t developing cataracts. So, number one, that’s one reason I go. And I don’t have them, which is a good thing because doctor did say that if I ever did develop them she would not take my cataracts off She would not perform the surgery because with the slim amount of vision I have left the risk would be, if she removed the cataracts I’d lose everything. And she said I’d rather you have cataracts and continue to be able to see the little bit that you do than remove them and lose everything which I would agree with. What I have in terms of sight now at this point wouldn’t be a lot to a sighted person but to me I have learned to adapt to it and use it to the best of my ability and losing what I have would still be devastating. So, for that reason, you know, I wouldn’t want to remove them. And for that reason, I don’t want to develop them so I continue to go check in with her. I also have questions you know about SickKids hopsital I’ve been going there since I was six months old and typically at 18 years old because it is a hospital for sick children, at eighteen years old , majority of people get transferred to a different hospital for adults in whatever their local area is or wherever another specialist for their disease is but because of my specific disease, there is no other doctor I can see. The doctor I see at SickKids who’s the head of the ophthalmology department, is the only doctor I can see. If I didn’t go see her, I would have to go for my appointments in the States and because of that they can’t say sorry you’re 18 you have to drive over to the States or fly to the US now to go have your appointments done. So, sorry the dog is at the door and he’s like rattling Christmas ornaments. So, that’s why at 21 I can still go to SickKids hospital and I will continue to go to SickKids hospital forever more. Unless my doctor leaves and moves somewhere else. I will just stalk her. I will follow her wherever she goes. And I have been seeing her my whole life and I love her. Well, I have been seeing her ever since I have been going to the ophthalmology department at SickKids and I believe I started going to ophthalmology at SickKids when I was about two. Because the department I’d seen before that was neurology.Anyways, that all aside, by the way I’m going to link down below my first RP video. Just like this one is sure to be, it was like really rambly and long but if you want to go get all the background of my journey with RP, I’ll definitely link that down below and you should probably watch that before you watch this one. Heads up. This appointment I for the first time in probably about 4 years got the drops that dilate your eyes, which if you’ve had them you know are not comfortable. I used to only let my dad put them in for me so he’d have to take work off every time I went to SickKids and put the drops in for me but at this point I’m a big girl now. I didn’t cry, I just tilted my head back and let them put the drops in and they put numbing drops in your eyes first and then they put two drops of the dilaters in each eye so you get three drops in each eye then you have to wait for half an hour. I always bring very dark sunglasses as you can see in that photo I posted of my friend Megan and I, I had dark sunglasses on. She had not gotten her drops yet which is why she didn’t have them on but that’s like the day the one day I will wear dark sunglasses inside because my eyes it makes your eyes so sensitive for pretty much 24 hours. They’re just so sensitive and it makes your vision go totally wacky and it’s brutal. But it must be done. So that’s why I have to have dark sunglasses on. And even if it didn’t make my eyes super light sensitive, I’d probably still wear super dark sunglasses because it does make your eyes look kind of wonky. Like your eyes definitely look weird.So to protect all the children from being scared, I put them on. So that’s why I had them on. And then so i waited half an hour, I went and got some food, and when I came back, they were ready to take the photos of my eyes. I was really lucky, my appointment was at like 8:15 in the morning so I was pretty much the first person there. So I was like in and out really quick, which was nice. They certainly don’t do as many tests now on me. So, say like the field vision test which is when you stick your head in a half globe and they move lights in and you tap when you see the light and they basically measure your field of vision because when you have RP your vision slowly closes up. So, like I don’t do that test anymore. I haven’t done that test since I was 14 years old because I just don’t really have a field of vision anymore to measure.I do very minimal testing but they basically went in at this point and took photos of the layers of my retina. So it was like this machine I put my chin on and my head in and they put the camera up right against your eye and you just have to stare forward and they’ll tell you like blink, don’t move your eye, do this, do that. And it’s not uncomfortable, it’s you don’t feel anything. And they took photos of the retinas and then luckily I was like walking out of the room where they take the photos and the woman who was taking the photo of my retina at the time, when she was doing my second eye, got a call that she was needed in the OR because she takes photos of kids’ retinas in the OR as well. So she like dashed through the room as soon as she was done with mine. I was walking out and my doctor saw me and she was like oh just come in now and so I probably stole somebody’s spot but we go way back so she was like come in come in. She spent like half an hour with me. It was great. We had so many lovely chats. And it was just like overall a really awesome appointment. We talked about you know what’s needed in the blind community these days. The education that’s still so needed surrounding this disease and just a whole host of other things. Symptoms I need to look for if I’m developing cataracts, that kind of thing. She was also telling me with RP Tulip 1 patients which is what I am . Tulip 1 basically references the gene that has caused my vision loss. So, with Tulip 1 patients something that tends to happen is as they get older the layers of their retinas thin out and basically the different layers, the different tissues, that do different things scramble, they get all mixed up, which means when it comes time for treatment or a cure it would be very difficult for for Tulip 1 patients whose layers have scrambled. Which is another reason they take pictures of the layers of my retina even though I can’t really see anymore because they need to monitor what my retina is doing and if it’s detaching anything like that. So my doctor said that my layers have thinned out a little bit but have not scrambled They are all in the right place, which is really great news. So, I was really happy to hear that and it’s so interesting that we were talking about she has five Tulip 1 patients now and I was diagnosed Tulip 1 when I was 16, there was only two of us, now there’s five of us It’s one of the more rare forms of RP and and so there’s five of us that she sees and she sees people from all over the world. So, five of us that she sees and she said you know even Tulip 1 patients we are all so different with our vision loss patterns you know We were just chatting about how if you out a whole bunch of us with RP in a room all of our journeys were so different. There is just no standard with this disease, which is what can make it so difficult to deal with. You literally have no idea what to expect when you have RP. There’s just no journey they can tell you you’re going to go on. It’s all over the map so I just thought that was really interesting that even when you have the same type of RP it’s totally different journeys. And that was, yeah that was basically it. She also recommended I take a supplement I used to take way back called Retina Complex, you just order it online. I believe it comes from Switzerland. And she said basically I can’t tell you it’s going to help. I can’t do that. But I can tell you that what I have seen from patients who are on it their vision is stable and their vision is doing well and they are keeping their vision longer but I can’t actually tel you scientifically clinically proven that it will. So I mean she just has to protect herself and be safe but if you have RP I recommend you go on it as well. talk to your doctor first of course but that’s what my doctor told me so I am going to start taking that again. I haven’t taken it in years. But, like I said it’s very important for me to keep what I have as long as possible becasue it’s not much and I don’t want to lose it. Because if I lost what I have now it would honestly be as devastating as it was when I lost majority of it in grade eight so I really want to keep it Now, all of that aside, now I’m going to get into what I really see because i get this question a lot. can you make a video describing what you see? And honestly it’s so complicated. I just, especially lately, I’ve been sitting back and looking around the world and realizing how cool it actually is. Like my vision is really interesting. It’s just really fascinating and I don’t think anybody will ever be able to grasp what I see based on descriptions but I will try my best. It’s pretty wacky to be honest. I really wished like people could like come up inside my brain and see from my perspective because it really is fascinating but I’ll start with this. The basic. I see light and shadow. So right now I can tell that there’s a ring light on my camera so for those who are constantly like she’s not blind, she’s faking it. How is she looking at the camera? Well, number one I sit straight in front of it so I look straight. But number two I can see the ring light on top of it so i look at the ring light. I can tell that I have four pot lights in my room. I can tell that I have a light over there and a light over there. We have lots of lights because they help me.Pot lights for other RP peeps, pot lights i have found over the years are the best so every house my family moves into we deck it out with pot lights that can also dim and go brighter. In case my eyes are more sensitive one day I keep them dim. if I want them really bright I will keep them up.Just a little tip that I have learned over the years. But yeah basically I can see where lights are and tell when it’s bright and when it’s dark. Say I am on a stage giving a speech at a theater, I can tell where the lights above me are on stage and I can tell sometimes if there’s like strings of lights on stairs or that kind of thing but everything past that is just like total blackness, total darkness. And then when it’s really bright so when it’s well lit like having good pot lights or a sunny day out but not too sunny because I am light sensitive One of the complicated things about having RP plus nystagmus is I’m light sensitive but I can see like have light perception so it’s kind of like a double edged sword. Anyways, yeah so if it is well lit, it has to be such specific lighting, but I can see some shapes and the shadows of things so I can tell if there is something in front of me or Just general shapes of thing kind of like a blurred lump It’s so finicky when I do see those and when I don’t I honestly can’t even begin to get into the details of that because it’s just so complicated. Basically all I can really say is say somebody is standing against a bright sunny window, I could tell that somebody was there because they’re blocking the light That’s the best way I can explain it.Or like you’re laying down outside, your eyes are closed, it’s a hot sunny day and somebody walks by while you’re suntanning and you can see that they have blocked your light.And you can tell if it’s like tall or if it’s wide or if it’s small. That’s like what it is for me. So that’s my light and shadow perception. Now, on top of that I also see fireworks so what that is is basically crazy colorful flashing lights. I know I did describe a lot of this in my RP journey video so I am sorry if this is repetitive for those of you who have just watched that. But yeah I see crazy flashing light. For me they are always purple, blue, and green. They never change colors. They are always the same. They are always the same vivid colors and the color, I don’t want to say texture like tone that they are is What are those lights? Like those lights in those signs that you would see outside of a store Like it’s that kind of vivid light. And they are just like crazy swirls and flashing lights and it’s all just crazy. It’s kind of like if you close your eyes and you gently push on them. A lot of people tend to see crazy flashing things because they’re putting pressure on their optic nerve That’s kind of like what I see. Like I said, they are always the same three colors, they have been since I was eight years old They’ve never changed. Which is how even though I have no visual memory of colors anymore I still remember what colors those are because it’s been the same my whole life. Since 2003. So I see those on top. And those never go away. They’re there when my eyes are open, when my eyes are closed, when I’m sleeping They’re constantly there. So I kind of have to see past those to see the light and shadows. And then on top of all of that I have zero depth perception. I never have. Which depth perception if you don’t know is your ability to see levels. So for me growing up the reason I had to use a white cane or a guide dog even when I still had a significant amount of vision is because I had no depth perception So, I couldn’t see say stairs. I would just fall down the stairs because to me it looked all the same level. Things like that so unless the color, ooh I’m itchy unless the color the was different it all looked the same. So everything in the world kind of looked flat to me and nothing, I had no perception of distance so something could look close or far away, I couldn’t tell. So that’s why I used a cane, to make sure I didn’t fall down the stairs or walk into things all the time. But the lack of depth perception has continued to this day of course. I am not going to randomly start getting depth perception So basically at night time, which is basically when I see street lights above me but pitch black surrounding it. So all I see is like these little dots. It’s kind of magical looking. But these little dots of lights everywhere and then total pitch black darkness surrounding those lights.And the lights are always like spinning around in crazy circles because I have nystagmus, my eyes always shake. So the lights actually like shake with my eyes whatever direction my eyes are shaking the lights have like a stream of light following them which is kind of again weird looking and wacky but it’s how I’ve always seen it And then because of my lack of depth perception I can only see this night because during the day there’s too much natural sun lighting so I can’t see car lights because of the natural or the natural sunlight is brighter than the car lights but at night time everything is pitch black surrounding the lights so I can actually see the car lights driving towards us but because I have no perception of depth, I can’t tell if it’s close or far away. the entire time it’s driving it looks like it’s equally as far away or equally as close. Either way you want to look at it The distance never changes to me until it’s drove like driven past us and I’m like oh it’s gone now. It’s looked the same distance the entire time even though we are both moving towards each other. So it’s really weird. And then on top of that, again because I have no depth perception I can not tell when I’m driving down the street at night that the car is on the other side of the road. It actually looks like it’s driving straight for us. So I constantly look from my point of view, it constantly looks like our car is about to get in a car crash and I have just gotten used to the fact that we’re not. It’s fine and everything is okay So even though I’m constantly sitting there going we are about to get in a car accident I know we’re not actually going to. It’s just my eyes playing weird blind girl tricks on me. And yeah so it looks like it’s constantly coming right towards us. The distance never changes and then it’s gone. And that’s basically what I see. That’s as much as I can tell you what I see. That’s like as in depth as I can get with you, describing what I see. So it’s really trippy, it’s really complicated It’s kinda magical and I really wish other people could have the opportunity to see it every now and then. But obviously you can’t. So that’s that, that’s everything I can think of that I want to share with you today. i’m sorry if it was all of the place Hopefully it was interesting. Please comment down below or tweet me if there’s anything you want to know more about, if you want me to go in depth about anything else. If you want some blind girl story time. I don’t know. Let me know Just let me know. Alright, I love you guys. That’s it. Thanks for watching. I totally lied. Why do I keep doing this? I also get a lot of questions, I actually get accused a lot here on YouTube of not really being blind because I don’t look blind, which side note, there’s no such [thing] You know you’ve talked a lot when your camera cuts you off because you went on talking too long So, yeah, I’m back so if anything looks slightly different that’s why. I had to just like put my SD card back in and push play again. So, I was just saying that I get accused a lot here on YouTube, mainly here only on YouTube. People don’t really have the audacity to do it in real life even if they may think it. I don’t think many people think it in real life because they actually are around me and they see me and they talk to me but I get accused a lot on YouTube about lying about being blind and faking it, looking for attention. The funniest part is when people are like I just checked out your channel, you’re not blind. I’m like, have you seen like all my guide dog videos, a thirty minute video about my journey with my disease. Like its just kind of like bizarre to me. Like, clearly you didn’t look through the channel much. Even if, even if the majority of my videos aren’t about being blind, I either have my computer talking to me or I’m reading braille or I mention blind girl moment, blind girl this. I’ll say it, you know like I’ll do something referring to being blind I don’t know so it’s just kind of funny. But it does happen quite often For the few people that make those rude comments I have so many other thousands of people making lovely supportive comments so to be honest those comments at this point don’t bother me. If they say something rude, I try to educate them in a nice way. If they say something rude back I just say okay obviously they don’t want to be educated and I just put it down to ignorance and not being open minded to learn. So it is what it is. But because of that, because people are like oh you don’t look blind, which nobody looks blind. There’s no such thing as looking blind. So I actually wrote an entire blog post about that that I will link down below but a lot of people one of the main things they say is you can’t be blind, you’re using technology. And so I did make an entire video, the last video I put up about how I use my technology as a blind person so I am going to link that down below in case you have not seen that yet because you should go check that out. And I want to do some follow up on that video because I feel like there’s so much more I can go into and I don’t know, I feel like it wasn’t a very well done video but I want to do some follow up videos on that. If you want to learn more about anything I talked about today, if you want me to talk more about it in another video, let me know. If you want me to do some blind girl story time. i have so many fun stories. I don’t know. Just let me know. I love you guys. Thank you for watching and staying with me this long. Thumbs this up if you’ve stayed to the end Please subscribe if you have not already. It helps me out a lot and I love you guys. Bye.