I've been legally blind since birth as well. Fortunately, I still and will keep the vision I have. And, I'm very greatful for that. With that said though. My vision is like, 20/540 in my good eye and 20/750 in my left eye. It's great that you have the attitude of not worrying about it. I'm 53 years old and I'm just not going to get bogged down in worrying about something I can't do anything about. It takes a lot of courage to put yourself out there like this. There's some cruel people on RUclips sometimes. I do wish you the best in al aspects of your life. And always remember this, there's nothing wrong with you. You are exactly like God wanted you to be.
Thank you so much for such a lovely comment! I’m glad your condition is stable so you don’t have to worry about all that uncertainty. And I agree that we are meant to be this way❤️
After losing sight due to RP, I stop having headaches from eye strain and light sensitivity. Your on the right track and convey your thoughts well. I appreciate this video and think it will help others going through the same thing.
Thank you! I’m glad you think I did a good job with this video and that it will help others. I sure hope so. I also feel like since I have lost more vision and started adapting to not using my sight as much it has really cut down on my eye strain
This by far is my most favorite video do you have ever made. You were spot-on and every aspect of every second of this video to the my feelings when it comes to my vision loss. I felt as if we were talking about just one person me but no you were talking about you. That just goes to show that there is so many of us that most likely feel the same way as you. Just like you I am so grateful for the site I still have each and every day. In fact, I add this to my prayers when I think God for everything I have. You did a fantastic job on this video. Thank you for making it got me thinking a lot. Also, I know I am grateful for the vision is still have however I also know that it could all go still down the road. As much as I don't want to lose my vision remaining I still would be better prepared and not as devastated if it was to happen. Because I keep it as a reality in my mind and know I will be prepared for it by preparing each and every day till. but I have higher hopes that this will not happen. It's good to think positive but also good to think of reality.
Wow this was such a nice comment. I’m so glad you liked the video and were able to relate so closely to my thoughts and feelings. One of my main goals of my channel is just to be someone that other blind and VI people can relate to, so comments like these really mean a lot to me ❤️
HEY CAYLA, I TOO HAVE RP AND HAD IT WHEN I WAS BORN. I JUST DID NOT GET A DIAGNOSES UNTIL I WAS THIRTEEN. BUT LIKE YOU, I TRY TO LIVE MY LIFE AS A BLIND PERSON AS MUCH AS I CAN SO THAT WHEN I DO LOSE MY VISION COMPLETELY IT WON'T BE A SHOCKER. THANK YOU FOR THIS AWESOME VIDEO AND I JUST LOVE HOW YOU THINK AND HOW YOU KEEP YOUR HEAD UP ABOUT ALL THINGS. SENDING YOU A GREAT BIG HUG. SEE YOU IN THE NEXT VIDEO!!
Hey Kayla, this was such a very well put together video. I am just now working on a similar topic to discuss on my next video, talking about the progressive loss of my visual acuity over my lifetime. I, like you, was born with measurable acuity of 20/200 which has changed to the point that now I do not have functional vision. I do however have vision, I just have a hard time interpreting what I’m saying and like you, I have to reach out and touch it to identify what it is. As far as bucket list, I do not think for me, A bucket list is necessary because I have done a lot of things that I really wanted to do over a lifetime and do not regret that some of them I could not see. For example I could not see or appreciate Stonehenge but could see the Eiffel tower quite well I could not see or appreciate Mount Rushmore and could not even see the Alps. But I have thoroughly enjoyed world travel with the varying degrees of vision that I have had. Besides, I think if you had a bucket list, some people would believe that they might have to hurry up and have children, so they could “see their faces“. I have had two children and now have three grandchildren and, yes it would be nice to see their faces but that, does not a relationship make. I would like to have seen the Grand Canyon and maybe the wilderness of Alaska but I just don’t believe that I would enjoy trips like that as much as more cultural type trips to different places. Just today, my husband and I were discussing discussing more details about our next European trip to Paris, even though we have been a couple of times, but he really wants to go to Normandie and that is on his bucket list. As far as being able to predict when my eyesight will progress to complete blindness, I don’t think I would want to know either, I don’t think I would do anything differently than what I am doing right now. Life is fine even with blind challenges thank you for such a well thought out and well presented video topic. Have a great week! Beverly
Thank you for those kind words! I’m so glad you liked the video. And thank you for such a thoughtful comment. It sounds like you have been to a lot of great places and will continue to do so. And I’m going to be honest, I have struggled with wanting to hurry up and have children so I can see them. So I love what you said about that not being necessary for a relationship, I think I needed to hear that. Thank you for sharing all of this, and I look forward to seeing your video on this topic❤️
Another well done video! There's so many things I would like to say but how do I fit them all into one comment?probably the biggest thing I can think that I would want to say is that you are right about not worrying about when it's going to happen. That has been difficult for me because I only started losing significant sight over the last 12 years, and mostly over the last five years. I never created a bucket list of things to see before I lose my sight. I do count myself blessed for being able to see my children grow up and become the young men that they are. five years ago I got a surprise trip across the country with a friend that I had no idea of or imagined doing. It was one of the most exciting things other than raising my children that I have ever done.
@@CaylawithaC it took us 7 days but we drove from upstate New York all the way down to Las Vegas Nevada and back up to Fresno California. I loved especially Colorado with the snow top mountains
I am so excited! I just got approved for services waiting for the people to call then we can start services like mobility !!! Been a long stressful 5 month waiting to get approved !
Could you do a video on how you pick out clothes? Also a blind Bucket list is a good idea because some things seem like they can’t be done without sight. If this is the case do it before your vision diminishes otherwise you may be too late!
I have no vision in my right eye in about 5% vision left in my left eye due to repeated corneal ulcers and infections. It’s a very real fear that I could lose more or all of my remaining vision but like you it’s not something that I choose to dwell on every day. If it does happen of course it would be quite an adjustment but as you said I also have a bump dots around my house and all this wonderful technology to assist me in my daily life. I am grateful for this site I have left and doing my best to keep it as long as possible.
Having full vision (well, as far as I know) watching your and Molly Burke's videos really has helped me think, too. Sighted people can go blind - maybe an eye disease has not set on yet or we will have a car crash and lose our vision, but I agree with you that I would not want to know! However, it is helpful to encounter the thought and have kind of like a "check-through", aka think through what you would do/how you would react/what you would need to change (since my place is not brailled at all, for example)... Thanks for another awesome video! I really enjoy and appreciate the way you talk about your journey, sharing it with us and making me think.
Aw thank you so much for those kind words. And you are so right that a sighted person always has the possibility of becoming blind, or acquiring any other disability. That’s why it’s so important for everyone to be kind to the disabled population and fight for accessibility because you never know if you may one day join them
I have posterior uveitis, which is quite different from RP, but I could possibly loose vision in the future. Basically my retinas and choroids are attacking themselves because uveitis is an autoimmune disease. I haven't lost vision yet but most people I've talked to with my type of uveitis have lost at least some vision. I'm so grateful for RUclipsrs like you and Molly Burke. You make me less afraid of loosing vision if I can't control my eye disease forever. I also have learned so much about living with vision loss and I feel somewhat prepared if the time comes! Thank you!
Hi! I understand that that can be scary. I’m so glad my videos have been helpful to you. I really love hearing that. Molly Burke also helped me a lot too, and I am so grateful that now I am able to help others in the same way ❤️
I’m glad it hasn’t been too bad for you. I think being born blind and losing your vision are pretty different experiences. I’m not saying one is better or worse than the other, they are just different. Thanks for sharing your experience
i was diagnosed with RP last week, thank you so much for this video. I am terrified about losing my sight and just trying to process it all. I do however feel a bit better knowing why I have lose some of my vision and why it is cloudy.
I think you are a very measured, lovely, very honest and grounded person. It seems like you live your life to the full and are a realist. I love watching you and listening to your experiences and thoughts. An inspirational young lady, and I wish you all the very best in life, I do worry about loosing the little residual vision I have, but, as you say, it isn't a constant worry, it is just there in the background. As the whole sight loss is relatively new to me at age 55, just a year now, I am trying to equip myself with as many skills as I can that will allow me to continue to have a quality life, should the worst happen and I do go completely blind - it does scare me. In terms of a blind bucket list, then I feel a bucket list is a bucket list, regardless of if is in case you loose your sight, or if its for things you want to do before you die - same difference, as no one knows when either of these things would happen. I certainly would not want to know when I was going to go blind for sure - I think I would panic and be depressed about it as time quickly passe d by and got hearted to Blind day lol
Aw thank you so much for all of those kind words! And thank you for sharing your thoughts. I know it must be a difficult adjustment for you since vision loss is relatively new. I think you are on the right path though with trying to learn as many skills as you can. That really will make a world of difference. I wish you the best!
Hi Kayla. Great video. My eye condition is not progressive, however there is a chance that in the future I can loose some vision and I think I like you I would not wanna know anything because like you said there’s nothing I can do to change it so I wouldn’t want to have it hanging over me and constantly being worried about it when it may or may not take place.
Hi! Thank you. I’m glad you liked the video. Thanks for sharing your thoughts on this subject. I agree with everything you said. I’m glad to know there are others out there who feel the same way as I do
My vision is getting slowly, but steadily worse, especially now that I’m going through menopause. My prognosis is similar to yours, my eye diseases could stabilize, but I doubt it. I guess we all have to focus on other things going on in life, because we certainly have control over our eyesight. Right on for you going on your vacation to Italy. 👍🏽😃 And I started a bucket list over ten years ago, at the very beginning of my sight loss. I didn’t even know I was going blind when I wrote it. With some modifications, and now blind, I still accomplished many things I set out to do.
Thanks for your comment! I totally agree that there are plenty of other things for us to focus on since we can’t control our eye sight. I definitely do have a bucket list, which is not the same as a blind bucket list, they are a list of things I want to do in life whether I have sight or not. It sounds like you are on that same page
Cayla with a C I think so. It does my heart good when I see others just living life as they see fit. There’s so many things that can bring a person down, so I love it seeing people just doing what makes them happy. (This doesn’t apply to those doing something really bad to others...😱)
When I first went visually impaired it was so hard and stressful and overwhelming! Now I am three years into it I have adjusted pretty good . It’s still a struggle every day but I have friends and family to help me ,! So blessed . I miss so many thing I use to be able to see like faces of people tress , colors , I miss looking in the mirror and seeing my face ... it’s hard
That’s totally understandable for it to be a struggle. I miss a lot of things that I used to be able to see too. I’m glad you are adjusting well though ❤️
Oh wow that’s really interesting. I don’t come across many people with RP who went completely blind that young. Do you mind me asking what your vision was like when you were a child?
Cayla with a C I was always totally blind in my left eye due to complications at birth, but as a child I could see like the text on soup cans and large print, now I read Braille and I can’t see any size of font x
Hi Cayla, I was diagnosed with RP last year at 23 years old. My periphery and night vision has slowly gotten worse. My eye floaters in my right eye are always there, so that doesn't bother me much. I still have a relatively large visual field, however, I have stopped driving completely at night. My eyes now, compared to last year are also very sensitive now to the sun, or bright room lights, so I wear sunglasses everywhere. To be honest, I wouldn't want to know when I would potentially lose my vision. But from how slowly it is progressing, I have a feeling I will still maintain some central vision, even if I grow old. Then again, if I were already an elderly lady, I guess being blind wouldn't be so bad, because I know we all don't live forever. I am just happy that I have family who is trying to protect me from obstacles and such, and holding my arm when stepping off a curb or platform. I have not gotten cane training, however, I am hoping that once I finish up Nursing school and pass my board exam, that I can focus on my eyes, and finding a job as a nurse where my vision will not make me impaired to the point where I put the safety of my patients in jeopardy. Although I will admit, I think about my RP and my vision all the time, which can make some days rough for me emotionally.
Hi! Thanks for sharing! RP does seem to usually progress pretty slowly. My eyes have become pretty sensitive to bright lights over the past few years too, so I totally understand. That’s great that you have a supportive family, that can really make things easier. Good luck with nursing school and job hunting! I wish you the best ❤️
Thank you for this video. 😊 It is really tough to explain to people that feeling of grateful for vision while still understanding that there’s a possibility of losing all of my vision. Completely agree that for me it’s also always in the back of my mind. I don’t spend my days thinking about the fact that I’m losing my vision all the time. I also have hearing loss so when I was first diagnosed it was very tough for me to see my vision loss as a possibility and go from there. I have really variable vision right now. I’m grateful for the vision I have. While I will look at the blue sky and the texture of the trees sometimes appreciating the color, it’s more of seeing the colors mixed in with the sound of the cars around me and the feel of the ground beneath me. When I was first diagnosed I did it more like I was trying to memorize it. I agree that there are good things and bad things about the vision bucket list idea. It’s what motivated me to visit Poland after I was diagnosed. And the amazing thing is that that trip made me realize the beauty in all of my senses: sight yes, but also the crunch of gravel of my feet and the smells of Polish cooking in the market and salty trees and even appreciating the transportation available in Poland. I definitely would not want to know when I were going to go blind. I would be in a constant state of panic. I am glad that so far for me it’s been slow because it’s easier to adapt and the idea of letting go of a small piece of my vision is easier than all at once. Hope that you had fun in Italy! 😁
I’m so glad you can relate! I agree that it is hard to explain. Poland sounds amazing! That’s great that you got to go. And yes, appreciating all 5 senses is so important. I think sighted people really miss out on some experiences because they are so focused on the visuals that they don’t take the opportunity to appreciate the other senses
I have retinitis pigmentosa and I’m 42 years old have a lost my site yet but I have a guide dog hope you’re doing well I found your channel through Facebook something with you too it’s a group that I’m in as well but yeah it’s a pretty good content
I wish I would have known years ago what my vision would be like now. I would have been more apt to do the things I wanted to do then and wouldn’t have taken my vision for granted. I had no clue that I would lose clarity in my central vision. I had 20/40 central vision even though I had less than 20 degrees peripheral. I was only told people with RP lose night vision and peripheral. What a surprise shortly after 2 cataract surgeries I ended up with 20/400 or just being able to see a partial E on the eye chart. I was told that RP will probably not progress because I have some healthy tissue blocking it however they could not say that something else such as age related macular degeneration could take more of my central vision as I get older.
I also didn’t know that I would lose my central vision. I was told it wouldn’t get any worse, so I was quite surprised too. I agree if I would’ve known there are probably some things I would’ve done differently
HEY CAYLA, I AM LIKE YOU IN MANY OF THE TOPICS YOU COVERED IN THIS VIDEO. I WOULD NOT WANT TO KNOW AHEAD OF TIME BEACAUSE I WOULD BE WORRyING ALL THE TIME DID I DO THIS OR THAT. AS FOR THE BLIND BUCKET LIST, I THINK IS IS A GOOD IDEA, BUT NOT A GOOD IDEA EITHER. I WOULD NOT WANT TO FEEL LIKE IF I DID LOSE MY VISION TOMORROW THAT I DID NOT DO ALL THE THINGS ON THE BUCKET LIST. I WOULD FEEL DEPRESSED THAT EVEN THOUGHT I CAN STILL DO THE THINGS ON THE LIST, I JUST COULD NOT SEE THEM EVER. SO IT CAN BE A GOOD THING, BUT NOT A GOOD THING. CURRENTLY, I AM 41 GOING TO BE 42 THIS YEAR IN JULY. BUT BEFORE I BECAME 40, MY SIGHT WAS PRETTY STEADY NOW MY VISION HAS PROGRESSIVELY GOTTEN WORSE AND IT JUST KEEPS COMING INSTEAD OF BEING STEADY LIKE IT WAS BEFORE. i REALLY DO LOVE YOUR OUTLOOK ON LIFE AND IT IS SO MUCH LIKE HOW I THINK.
I’m glad you can relate! I agree with your thoughts on the blind bucket list, that’s why I said I kind of have mixed feelings about it. I’m sorry that your vision has started to decline. It seems like you have a pretty good outlook on it though
If that possibility comes,dont worry youre still beautiful and i know god loves us ☺️.. I hope that possibility will not come and let you in into the darkness.. 😊 Im from the Philippines and im leaving with one eye.. I lost my left eye 2 months ago and im still in the healing process😊
Kayla my mission is the same they told me but age rating I might lose my site and I am 21 years of age and I still have a bit left so I'm doing good like you
I think I wouldn't like to know when when I don't think I would like to know but I mean like if I want to go like turtles and blind I don't think I would like to know I'm I'm against or I don't believe about the bucket list I totally agree with you whatever's going to happen is going to happen and yes cuz yes I'm blind but I can still see something so I'm thankful for that if I do kiss my ass are going to do up when whenever they feel like
That’s a great question, but I don’t really have an answer. I didn’t really do anything special, I just make videos and I guess people liked them enough to subscribe
Hot damn. My question got its own video! It sounds kind of fucked up but I think you'll understand what I mean when I say you're lucky that your vision's as bad as it is. I'm functionally sighted but legally blind (20/400) as you might remember but others might not know. If I lost my eye, I'd be absolutely fucked. I play video games. I can't read braille. I can use a cane and use JAWS so I wouldn't be 100% fucked... nevertheless, it'd be a MAJOR life change for me whereas it wouldn't so much for you. Nonetheless, invest in legos. That was my plan when I had an eye surgery in the past. Always have a backup plan. If I had a blind bucket list, it would be to do shit that has to do directly with my eye. I want to paint (just to see if I can.) I want to see my wife as clear as possible so I have a visual frame of reference. I want to beat ADOM (hard as hell game I've been trying to beat for 20 years.) All of those things are things I CAN NOT DO if I'm blind... whereas spelunking in a cave, losing weight, joining an MMA gym (or something like that) don't necessarily need my eye. So I agree with you on the whole blind bucket list thing. As for knowing when, you and I disagree there and I know why too. Our personalities are different. I live in constant anticipation. The more I know, the more I can plan (drives my wife nuts too.) Apropos of nothing more than an errant thought, we RoP sufferers need some love too. Every eye channel I watch is RP and I think it's gotten enough attention. The RoP camp needs a speaker before we all die out (since technology has kind of rendered the "too much oxygen" thing moot nowadays.) I'm gonna buck the trend. I'm Ryan. I suffer from RoP! Represent, sucka! :P AND YET AGAIN, you intrigued me enough to write a book, lol.
Lol I have actually been wanting to make a video about this topic for a really long time. I somewhat agree with you that the worse your vision is to start with the easier it would be to adjust to being completely blind. However, I think it’s more complex than that. Just because it may be an easier adjustment doesn’t mean that it’s an easier life. And I understand your thoughts on the blind bucket list. There are some things you may want to do that require vision and other things you can do without it. I’m going to have to disagree with you about us having different personalities in this aspect. I am very much a planner and a control freak, and I like to have every single detail of my life planned out, anticipating every little thing. However, since I literally can’t plan, control, or anticipate this, I just let go of it, which is pretty uncharacteristic of me.
I've been legally blind since birth as well. Fortunately, I still and will keep the vision I have. And, I'm very greatful for that. With that said though. My vision is like, 20/540 in my good eye and 20/750 in my left eye. It's great that you have the attitude of not worrying about it. I'm 53 years old and I'm just not going to get bogged down in worrying about something I can't do anything about. It takes a lot of courage to put yourself out there like this. There's some cruel people on RUclips sometimes. I do wish you the best in al aspects of your life. And always remember this, there's nothing wrong with you. You are exactly like God wanted you to be.
Thank you so much for such a lovely comment! I’m glad your condition is stable so you don’t have to worry about all that uncertainty. And I agree that we are meant to be this way❤️
After losing sight due to RP, I stop having headaches from eye strain and light sensitivity. Your on the right track and convey your thoughts well. I appreciate this video and think it will help others going through the same thing.
Thank you! I’m glad you think I did a good job with this video and that it will help others. I sure hope so. I also feel like since I have lost more vision and started adapting to not using my sight as much it has really cut down on my eye strain
This by far is my most favorite video do you have ever made. You were spot-on and every aspect of every second of this video to the my feelings when it comes to my vision loss. I felt as if we were talking about just one person me but no you were talking about you. That just goes to show that there is so many of us that most likely feel the same way as you.
Just like you I am so grateful for the site I still have each and every day. In fact, I add this to my prayers when I think God for everything I have. You did a fantastic job on this video. Thank you for making it got me thinking a lot.
Also, I know I am grateful for the vision is still have however I also know that it could all go still down the road. As much as I don't want to lose my vision remaining I still would be better prepared and not as devastated if it was to happen. Because I keep it as a reality in my mind and know I will be prepared for it by preparing each and every day till. but I have higher hopes that this will not happen. It's good to think positive but also good to think of reality.
Wow this was such a nice comment. I’m so glad you liked the video and were able to relate so closely to my thoughts and feelings. One of my main goals of my channel is just to be someone that other blind and VI people can relate to, so comments like these really mean a lot to me ❤️
HEY CAYLA,
I TOO HAVE RP AND HAD IT WHEN I WAS BORN. I JUST DID NOT GET A DIAGNOSES UNTIL I WAS THIRTEEN. BUT LIKE YOU, I TRY TO LIVE MY LIFE AS A BLIND PERSON AS MUCH AS I CAN SO THAT WHEN I DO LOSE MY VISION COMPLETELY IT WON'T BE A SHOCKER.
THANK YOU FOR THIS AWESOME VIDEO AND I JUST LOVE HOW YOU THINK AND HOW YOU KEEP YOUR HEAD UP ABOUT ALL THINGS. SENDING YOU A GREAT BIG HUG. SEE YOU IN THE NEXT VIDEO!!
That’s a great attitude to have. And thank you so much for your sweet comments❤️
I just want to say that I love your sense of style. It’s simple, yet pretty and feminine. ❤️❤️❤️
Aw thank you so much!! That compliment really means a lot to me ❤️
Hey Kayla, this was such a very well put together video. I am just now working on a similar topic to discuss on my next video, talking about the progressive loss of my visual acuity over my lifetime. I, like you, was born with measurable acuity of 20/200 which has changed to the point that now I do not have functional vision. I do however have vision, I just have a hard time interpreting what I’m saying and like you, I have to reach out and touch it to identify what it is. As far as bucket list, I do not think for me, A bucket list is necessary because I have done a lot of things that I really wanted to do over a lifetime and do not regret that some of them I could not see. For example I could not see or appreciate Stonehenge but could see the Eiffel tower quite well I could not see or appreciate Mount Rushmore and could not even see the Alps. But I have thoroughly enjoyed world travel with the varying degrees of vision that I have had. Besides, I think if you had a bucket list, some people would believe that they might have to hurry up and have children, so they could “see their faces“. I have had two children and now have three grandchildren and, yes it would be nice to see their faces but that, does not a relationship make. I would like to have seen the Grand Canyon and maybe the wilderness of Alaska but I just don’t believe that I would enjoy trips like that as much as more cultural type trips to different places. Just today, my husband and I were discussing discussing more details about our next European trip to Paris, even though we have been a couple of times, but he really wants to go to Normandie and that is on his bucket list. As far as being able to predict when my eyesight will progress to complete blindness, I don’t think I would want to know either, I don’t think I would do anything differently than what I am doing right now. Life is fine even with blind challenges thank you for such a well thought out and well presented video topic. Have a great week! Beverly
Thank you for those kind words! I’m so glad you liked the video. And thank you for such a thoughtful comment. It sounds like you have been to a lot of great places and will continue to do so. And I’m going to be honest, I have struggled with wanting to hurry up and have children so I can see them. So I love what you said about that not being necessary for a relationship, I think I needed to hear that. Thank you for sharing all of this, and I look forward to seeing your video on this topic❤️
Another well done video! There's so many things I would like to say but how do I fit them all into one comment?probably the biggest thing I can think that I would want to say is that you are right about not worrying about when it's going to happen. That has been difficult for me because I only started losing significant sight over the last 12 years, and mostly over the last five years. I never created a bucket list of things to see before I lose my sight. I do count myself blessed for being able to see my children grow up and become the young men that they are. five years ago I got a surprise trip across the country with a friend that I had no idea of or imagined doing. It was one of the most exciting things other than raising my children that I have ever done.
mrsteresa1999 thank you! A trip across the country sounds really exciting. Where all did you go?
@@CaylawithaC it took us 7 days but we drove from upstate New York all the way down to Las Vegas Nevada and back up to Fresno California. I loved especially Colorado with the snow top mountains
I am so excited! I just got approved for services waiting for the people to call then we can start services like mobility !!! Been a long stressful 5 month waiting to get approved !
That’s awesome! And great that you are so excited about it. Good luck with everything!
Could you do a video on how you pick out clothes? Also a blind Bucket list is a good idea because some things seem like they can’t be done without sight. If this is the case do it before your vision diminishes otherwise you may be too late!
That’s a good idea. I will add it to my list. Thank you for the suggestion! And thanks for sharing your thoughts on a blind bucket list
I have no vision in my right eye in about 5% vision left in my left eye due to repeated corneal ulcers and infections. It’s a very real fear that I could lose more or all of my remaining vision but like you it’s not something that I choose to dwell on every day. If it does happen of course it would be quite an adjustment but as you said I also have a bump dots around my house and all this wonderful technology to assist me in my daily life. I am grateful for this site I have left and doing my best to keep it as long as possible.
I totally agree! And yes, technology will make it so much easier. If there was ever a time to go blind, it would be now
Having full vision (well, as far as I know) watching your and Molly Burke's videos really has helped me think, too. Sighted people can go blind - maybe an eye disease has not set on yet or we will have a car crash and lose our vision, but I agree with you that I would not want to know! However, it is helpful to encounter the thought and have kind of like a "check-through", aka think through what you would do/how you would react/what you would need to change (since my place is not brailled at all, for example)...
Thanks for another awesome video! I really enjoy and appreciate the way you talk about your journey, sharing it with us and making me think.
Aw thank you so much for those kind words. And you are so right that a sighted person always has the possibility of becoming blind, or acquiring any other disability. That’s why it’s so important for everyone to be kind to the disabled population and fight for accessibility because you never know if you may one day join them
I have posterior uveitis, which is quite different from RP, but I could possibly loose vision in the future. Basically my retinas and choroids are attacking themselves because uveitis is an autoimmune disease. I haven't lost vision yet but most people I've talked to with my type of uveitis have lost at least some vision. I'm so grateful for RUclipsrs like you and Molly Burke. You make me less afraid of loosing vision if I can't control my eye disease forever. I also have learned so much about living with vision loss and I feel somewhat prepared if the time comes! Thank you!
Hi! I understand that that can be scary. I’m so glad my videos have been helpful to you. I really love hearing that. Molly Burke also helped me a lot too, and I am so grateful that now I am able to help others in the same way ❤️
I am completely blind and it's not too bad for me but I have been the same since birth so I'm used to it
I’m glad it hasn’t been too bad for you. I think being born blind and losing your vision are pretty different experiences. I’m not saying one is better or worse than the other, they are just different. Thanks for sharing your experience
Blind or fully blind I hope you keep making more content because you're brilliant at what you do and how you're able to get behind the camera
Aw thank you so much!
You focus on the positives rather than the negative's
i was diagnosed with RP last week, thank you so much for this video. I am terrified about losing my sight and just trying to process it all. I do however feel a bit better knowing why I have lose some of my vision and why it is cloudy.
I know that must be scary. Just try to hang in there and take it one day at a time
I think you are a very measured, lovely, very honest and grounded person. It seems like you live your life to the full and are a realist. I love watching you and listening to your experiences and thoughts. An inspirational young lady, and I wish you all the very best in life, I do worry about loosing the little residual vision I have, but, as you say, it isn't a constant worry, it is just there in the background. As the whole sight loss is relatively new to me at age 55, just a year now, I am trying to equip myself with as many skills as I can that will allow me to continue to have a quality life, should the worst happen and I do go completely blind - it does scare me. In terms of a blind bucket list, then I feel a bucket list is a bucket list, regardless of if is in case you loose your sight, or if its for things you want to do before you die - same difference, as no one knows when either of these things would happen. I certainly would not want to know when I was going to go blind for sure - I think I would panic and be depressed about it as time quickly passe d by and got hearted to Blind day lol
Aw thank you so much for all of those kind words! And thank you for sharing your thoughts. I know it must be a difficult adjustment for you since vision loss is relatively new. I think you are on the right path though with trying to learn as many skills as you can. That really will make a world of difference. I wish you the best!
Hi Kayla. Great video. My eye condition is not progressive, however there is a chance that in the future I can loose some vision and I think I like you I would not wanna know anything because like you said there’s nothing I can do to change it so I wouldn’t want to have it hanging over me and constantly being worried about it when it may or may not take place.
Hi! Thank you. I’m glad you liked the video. Thanks for sharing your thoughts on this subject. I agree with everything you said. I’m glad to know there are others out there who feel the same way as I do
My vision is getting slowly, but steadily worse, especially now that I’m going through menopause. My prognosis is similar to yours, my eye diseases could stabilize, but I doubt it. I guess we all have to focus on other things going on in life, because we certainly have control over our eyesight.
Right on for you going on your vacation to Italy. 👍🏽😃
And I started a bucket list over ten years ago, at the very beginning of my sight loss. I didn’t even know I was going blind when I wrote it. With some modifications, and now blind, I still accomplished many things I set out to do.
Thanks for your comment! I totally agree that there are plenty of other things for us to focus on since we can’t control our eye sight. I definitely do have a bucket list, which is not the same as a blind bucket list, they are a list of things I want to do in life whether I have sight or not. It sounds like you are on that same page
Cayla with a C I think so. It does my heart good when I see others just living life as they see fit. There’s so many things that can bring a person down, so I love it seeing people just doing what makes them happy. (This doesn’t apply to those doing something really bad to others...😱)
When I first went visually impaired it was so hard and stressful and overwhelming! Now I am three years into it I have adjusted pretty good . It’s still a struggle every day but I have friends and family to help me ,! So blessed . I miss so many thing I use to be able to see like faces of people tress , colors , I miss looking in the mirror and seeing my face ... it’s hard
That’s totally understandable for it to be a struggle. I miss a lot of things that I used to be able to see too. I’m glad you are adjusting well though ❤️
We are the same its been 3 years for me its so hard to see my face in the mirror
Please tell us more about your Italy trip!!!
I actually posted a vlog of our trip last week
@@CaylawithaC oh man! I missed that one. I'll have to go check it out :)
I have recessive RP and I am totally blind now, I lost my vision at 21, I’m now 29 xx
Oh wow that’s really interesting. I don’t come across many people with RP who went completely blind that young. Do you mind me asking what your vision was like when you were a child?
Cayla with a C I was always totally blind in my left eye due to complications at birth, but as a child I could see like the text on soup cans and large print, now I read Braille and I can’t see any size of font x
Blind In Society that’s really interesting. I could read large print as a child too but can’t read it anymore either
Hi Cayla, I was diagnosed with RP last year at 23 years old. My periphery and night vision has slowly gotten worse. My eye floaters in my right eye are always there, so that doesn't bother me much. I still have a relatively large visual field, however, I have stopped driving completely at night. My eyes now, compared to last year are also very sensitive now to the sun, or bright room lights, so I wear sunglasses everywhere. To be honest, I wouldn't want to know when I would potentially lose my vision. But from how slowly it is progressing, I have a feeling I will still maintain some central vision, even if I grow old. Then again, if I were already an elderly lady, I guess being blind wouldn't be so bad, because I know we all don't live forever. I am just happy that I have family who is trying to protect me from obstacles and such, and holding my arm when stepping off a curb or platform. I have not gotten cane training, however, I am hoping that once I finish up Nursing school and pass my board exam, that I can focus on my eyes, and finding a job as a nurse where my vision will not make me impaired to the point where I put the safety of my patients in jeopardy. Although I will admit, I think about my RP and my vision all the time, which can make some days rough for me emotionally.
Hi! Thanks for sharing! RP does seem to usually progress pretty slowly. My eyes have become pretty sensitive to bright lights over the past few years too, so I totally understand. That’s great that you have a supportive family, that can really make things easier. Good luck with nursing school and job hunting! I wish you the best ❤️
I have friends with RP. I wish I could help him more. He lives far away from me. If I could go visit him I would.
I’m sure your friend is happy to know that you would help him and visit him if you could. It’s the thought that counts
Thank you for this video. 😊 It is really tough to explain to people that feeling of grateful for vision while still understanding that there’s a possibility of losing all of my vision. Completely agree that for me it’s also always in the back of my mind. I don’t spend my days thinking about the fact that I’m losing my vision all the time. I also have hearing loss so when I was first diagnosed it was very tough for me to see my vision loss as a possibility and go from there. I have really variable vision right now. I’m grateful for the vision I have. While I will look at the blue sky and the texture of the trees sometimes appreciating the color, it’s more of seeing the colors mixed in with the sound of the cars around me and the feel of the ground beneath me. When I was first diagnosed I did it more like I was trying to memorize it. I agree that there are good things and bad things about the vision bucket list idea. It’s what motivated me to visit Poland after I was diagnosed. And the amazing thing is that that trip made me realize the beauty in all of my senses: sight yes, but also the crunch of gravel of my feet and the smells of Polish cooking in the market and salty trees and even appreciating the transportation available in Poland. I definitely would not want to know when I were going to go blind. I would be in a constant state of panic. I am glad that so far for me it’s been slow because it’s easier to adapt and the idea of letting go of a small piece of my vision is easier than all at once. Hope that you had fun in Italy! 😁
I’m so glad you can relate! I agree that it is hard to explain. Poland sounds amazing! That’s great that you got to go. And yes, appreciating all 5 senses is so important. I think sighted people really miss out on some experiences because they are so focused on the visuals that they don’t take the opportunity to appreciate the other senses
You go girl!
Thank you!! ❤️
I have retinitis pigmentosa and I’m 42 years old have a lost my site yet but I have a guide dog hope you’re doing well I found your channel through Facebook something with you too it’s a group that I’m in as well but yeah it’s a pretty good content
Hi! Thank you! I am glad you are enjoying my videos.
Well said! Kudos! ❤️
Thank you! ❤️
I wish I would have known years ago what my vision would be like now. I would have been more apt to do the things I wanted to do then and wouldn’t have taken my vision for granted. I had no clue that I would lose clarity in my central vision. I had 20/40 central vision even though I had less than 20 degrees peripheral. I was only told people with RP lose night vision and peripheral. What a surprise shortly after 2 cataract surgeries I ended up with 20/400 or just being able to see a partial E on the eye chart. I was told that RP will probably not progress because I have some healthy tissue blocking it however they could not say that something else such as age related macular degeneration could take more of my central vision as I get older.
I also didn’t know that I would lose my central vision. I was told it wouldn’t get any worse, so I was quite surprised too. I agree if I would’ve known there are probably some things I would’ve done differently
That is how I feel at the moment same way
I’m glad you can relate
HEY CAYLA,
I AM LIKE YOU IN MANY OF THE TOPICS YOU COVERED IN THIS VIDEO. I WOULD NOT WANT TO KNOW AHEAD OF TIME BEACAUSE I WOULD BE WORRyING ALL THE TIME DID I DO THIS OR THAT. AS FOR THE BLIND BUCKET LIST, I THINK IS IS A GOOD IDEA, BUT NOT A GOOD IDEA EITHER. I WOULD NOT WANT TO FEEL LIKE IF I DID LOSE MY VISION TOMORROW THAT I DID NOT DO ALL THE THINGS ON THE BUCKET LIST. I WOULD FEEL DEPRESSED THAT EVEN THOUGHT I CAN STILL DO THE THINGS ON THE LIST, I JUST COULD NOT SEE THEM EVER. SO IT CAN BE A GOOD THING, BUT NOT A GOOD THING.
CURRENTLY, I AM 41 GOING TO BE 42 THIS YEAR IN JULY. BUT BEFORE I BECAME 40, MY SIGHT WAS PRETTY STEADY NOW MY VISION HAS PROGRESSIVELY GOTTEN WORSE AND IT JUST KEEPS COMING INSTEAD OF BEING STEADY LIKE IT WAS BEFORE.
i REALLY DO LOVE YOUR OUTLOOK ON LIFE AND IT IS SO MUCH LIKE HOW I THINK.
I’m glad you can relate! I agree with your thoughts on the blind bucket list, that’s why I said I kind of have mixed feelings about it. I’m sorry that your vision has started to decline. It seems like you have a pretty good outlook on it though
Hello dear friend it’s Jon
I’ll be praying for you that you and your family can find peace in your heart and joy ok.
If that possibility comes,dont worry youre still beautiful and i know god loves us ☺️..
I hope that possibility will not come and let you in into the darkness.. 😊
Im from the Philippines and im leaving with one eye.. I lost my left eye 2 months ago and im still in the healing process😊
Thank you for those kind words. And I wish you the best of luck in your recovery ❤️
Kayla my mission is the same they told me but age rating I might lose my site and I am 21 years of age and I still have a bit left so I'm doing good like you
Yeah I'm going through things with my eyes right now do u have eye pain I do
I don’t really get much eye pain. Only if I’m out in the really bright sun
I feel the same way
I think I wouldn't like to know when when I don't think I would like to know but I mean like if I want to go like turtles and blind I don't think I would like to know I'm I'm against or I don't believe about the bucket list I totally agree with you whatever's going to happen is going to happen and yes cuz yes I'm blind but I can still see something so I'm thankful for that if I do kiss my ass are going to do up when whenever they feel like
I must ask. How did u grow your RUclips Chanel?
That’s a great question, but I don’t really have an answer. I didn’t really do anything special, I just make videos and I guess people liked them enough to subscribe
I have a RUclips channel called the Blind Bookworm. I love books and i love sharing my love of books with others.
I want to get to know you if you don’t mind we have a lot in common
Hot damn. My question got its own video!
It sounds kind of fucked up but I think you'll understand what I mean when I say you're lucky that your vision's as bad as it is. I'm functionally sighted but legally blind (20/400) as you might remember but others might not know. If I lost my eye, I'd be absolutely fucked. I play video games. I can't read braille. I can use a cane and use JAWS so I wouldn't be 100% fucked... nevertheless, it'd be a MAJOR life change for me whereas it wouldn't so much for you. Nonetheless, invest in legos. That was my plan when I had an eye surgery in the past. Always have a backup plan.
If I had a blind bucket list, it would be to do shit that has to do directly with my eye. I want to paint (just to see if I can.) I want to see my wife as clear as possible so I have a visual frame of reference. I want to beat ADOM (hard as hell game I've been trying to beat for 20 years.) All of those things are things I CAN NOT DO if I'm blind... whereas spelunking in a cave, losing weight, joining an MMA gym (or something like that) don't necessarily need my eye. So I agree with you on the whole blind bucket list thing.
As for knowing when, you and I disagree there and I know why too. Our personalities are different. I live in constant anticipation. The more I know, the more I can plan (drives my wife nuts too.)
Apropos of nothing more than an errant thought, we RoP sufferers need some love too. Every eye channel I watch is RP and I think it's gotten enough attention. The RoP camp needs a speaker before we all die out (since technology has kind of rendered the "too much oxygen" thing moot nowadays.) I'm gonna buck the trend. I'm Ryan. I suffer from RoP! Represent, sucka! :P
AND YET AGAIN, you intrigued me enough to write a book, lol.
Lol I have actually been wanting to make a video about this topic for a really long time. I somewhat agree with you that the worse your vision is to start with the easier it would be to adjust to being completely blind. However, I think it’s more complex than that. Just because it may be an easier adjustment doesn’t mean that it’s an easier life. And I understand your thoughts on the blind bucket list. There are some things you may want to do that require vision and other things you can do without it. I’m going to have to disagree with you about us having different personalities in this aspect. I am very much a planner and a control freak, and I like to have every single detail of my life planned out, anticipating every little thing. However, since I literally can’t plan, control, or anticipate this, I just let go of it, which is pretty uncharacteristic of me.