Being visually impaired: Follow-up 1: Answering your questions - What would you ask a visually impaired person?
A short intro for new readers: I am a 24 year old woman and I became visually impaired between the age of 10 and 14. Due to my eye-condition (Stargardt’s Disease) I have lost my central vision to the point the doctors told me I had a vision of 5% left. Life is full of challenges but I try to keep a positive attitude. I like to share my thoughts, ideas and experiences with you so I asked Steemers what would be interesting to tell about from my perspective. Thank you all for reading my previous post (and this one) and reply with such interesting questions! It really means a lot to me to be able to tell my story and knowing that someone is listening:)
You can read the previous post here, where I asked you what would be interesting to know.
Reading guide In answering all of your questions, I came to realize that it became a pretty long post. So I’ve decided to split it up in 4 or 5 posts just to keep it fun (instead of having to read a dreadfully long post all at once). Some questions were hard to answer shortly, I’ve tried it but I’ve also decided to do an extended version on some themes because there is just so much to tell. I marked the questions with an * at the end to indicate that I will be doing a separate/extended post on those themes. Lastly, I hope you enjoy reading my answers. I did not wrote this post as a whole story so you can also skip to the questions that you think are interesting without having to miss something like a core storyline.
So, let’s get started!!
Do I meditate?
I do sporadically meditate although it probably would be better for me to do it more often but I keep forgetting to actually do it. It does not take a lot of time at all so I guess I don’t really have a great excuse not to do it haha. When I meditate I prefer doing a body scan when I am lying in bed (with feelings of anxiety or stress). Or I will go outside to do some ‘walking meditation’, I like walking and enjoying my surroundings. As a psychology student I know that mindfulness is trending, especially in combination with cognitive behavioral therapies, which are often used to treat stress and anxiety. So with that in mind I know that meditation can be very helpful, also for me since I do have feelings of anxiety sometimes.
Is my sight loss equally in percentage in both eyes?
Yes, they are about the same. I think it is very common with my eye-condition. I do have a ‘better’ eye, but the difference is not actually noticeable. I only know that I have a better eye because of the tests I have done. I believe that one eye has 5% vision and the other like 8%.
Do I sleep?
As a human being, I do sleep. But the reason this was asked is if I had problems with my internal clock due to seeing enough light (for my body) to notice if it is day or night time. I have heard of this before although it does not apply to me. My contrast vision is slightly damaged but other than that I have no problems with incoming light in order for me to sleep. I do know that besides contrast vision, sleeping problems are very common among visually impaired people. I don’t exactly know why though... I can imagine it has something to do with coping skills and more the psychological side of having a disability. Or that the visual impairment demands more energy to perform tasks than with normal vision so sleep and sleepiness play a big role. I do have countless sleepless night but I think they are linked to feelings of anxiety I have, usually due to study stress.
Do I dream?
Yes, I do dream. Not dreaming is very rare I believe. But the way I dream is different from normal sighted people. In my dreams al am also visually impaired. I know that because of the themes I dream about but also the images I can recall. For example, I dreamt once that I walked somewhere and I completely didn’t recognized a certain person (because I just couldn’t see the specific characteristics of that person). So I felt shame because I walked passed that person without saying anything. When I recall images of my dreams I see the world how I’ve been seeing it for the past 10 years. I cannot remember (in actual seeing) how the world looks like with a normal vision. I can only remember that by thinking of things I used to be able to do, like reading road signs. I found an interesting video that explains how blind people dream and what age is important in order to dream in vision --> https://www.youtube.com/watch?v=Ke5Is2cs4Rc
What caused my sight loss and how did it deteriorate?*
I have Stargardt’s Disease which is a hereditary type of macular degeneration. Originally it is an age-related eye-condition but due to a gene mutation my macula started to degenerate when I was about 10 years old. I started to notice it in class when it became harder for me to read what was on the blackboard. But 4 years later, when I was finally diagnosed, the doctors then told me I lost my central vision which I had actually never been conscious about, very weird! It’s like you have to consciously know that your central vision is gone in order to see that it is gone. I immediately tested it by looking straight at an object, I then noticed that the object disappeared into my scotoma (sort of a blind spot).
Besides from my eye-condition I also am nearsighted. If I did not have Stargardt’s Disease I would have needed glasses with -2 (not sure if those numbers are internationally the same?) The reason I don’t wear glasses is that it does not make me read any better, the difference in seeing is very small. Glasses actually make my near sight a bit worse so they only stand in the way. I must say that I do own a pair of glasses because it does make the leaves on the trees a bit more ‘sharp’. So now and then, when I am walking, I will wear them just to enjoy my surroundings (especially nature) a bit more.
Do I feel it is harder to be born with bad vision or to loss it later in life?
Well, you can’t miss what was never there. I guess that is true in some ways. However, my sight loss is a fact of life. I can’t change it so I can be mad about and hate the whole world or I can accept it and make the best of my situation. If I would have known that I had a hereditary disease and that I was likely to lose my vision between the age of 7 and 12, I maybe would have purposely look at things I could enjoy. On the other hand, that would probably also lead to me missing more what I had lost. But this is just ‘what if’ thinking and it is not very helpful. I cannot speak for someone who has been blind all their life, I can only speak for myself and I would say that it is not the end of the world to lose your vision if you once had a normal one. Of course adapting to it is hard since we live in a normal sighted world so we (the visually impaired) are the ones who have to adapt to this world (of course with some help and love but still).
There are times that I miss seeing. And by seeing I mean actually seeing, since I can’t recall (in my head) how an image looks like with normal vision. I think it’s mostly about missing the idea of doing something with a normal vision. For example, reading a book in a comfy chair while sitting in a comfy position and just enjoying the book. If I want to read a book (actually reading it and not hearing it) I need my electronic magnifier and I have to hold it close to my eyes, which means that my arms are constantly up and that is intensive and distracting while you try to do something to relax. Therefore, I usually sit behind a table and I need to bend all over the table/book in order to read for a longer time (while also trying not to get too much back pains). I am telling you this so you can create a picture in your head, I am not telling you this to be seen as a sad girl who is oooh so pitiful that she can’t even read a book the way she wants to. NO, haha, it is just the way it is and I can accept that :)
Writing these posts take me a lot of time, I will try my best to post the next one in one of these days!
p.s. If new questions pop up, just ask! :)
I love your courage and tenacity!
I am following you and read every post you make. The best of luck here on Steemit!
If your are visually challenged, does that give extra understanding of signals your get from like hearing?
I mean a person with good eyes can feel or hear something and then look around to check the surroundings, does a person lacking such a skill have other ways to survey their environment.
Personally I would think someone who cannot rely like a sixth sense to interrogate their environment. Consider if a person was just standing motionless six feet away, if it was completely dark I would not realize but I am thinking you would have a lifetime of experiences to consider and think something is not correct about your surroundings . . .
When I get up in the middle of the night I have some low light night vision, once I turn the light on my enhanced vision is lost and gone. Thus when I turn the light out I am as blind as a potato and literally stumble back to the bed mainly using feel and touch . . .
Interesting, I will talk about my senses in one of the next posts (it was also asked in my previous post). In short, I am not sure if I can really hear better but I do rely on it more. Sometimes I hardly have to look before crossing a street (of course you always have to be alert for cyclists and hikers but still).
Many years ago, I took a seat next to a blind man on the bus. We spoke briefly, very briefly. I was impressed at first that he could somehow sense I wanted the seat beside him because he moved his belongings to open up the seat. Coincidence? Maybe. Small talk led to me asking how a blind person dreams. He claimed he's been blind since early childhood. Yet nearly every night, when he'd fall asleep, he said he'd see things. He said he used to wake up screaming, describing what he saw to his siblings and they would just respond, "It was only a tree, go back to sleep." He said he knows what a tree feels like, but has only seen one in his sleep. He claimed he could describe the entire world to me the way he sees it... but it was my stop.
Wauw, that is amazing! I've never heard something like that, some people just have such interesting stories :D
I believed the man and regret not having more time to listen. I also believe the deep mind where senses are processed is accessible without the physical connection to our environment. Ever smell something that you remember from your childhood... but there's nothing around that should smell like that? Happens to me all the time...
Wow, you are incredible.
Good to see you are staying strong. I appreciated my almost perfect vision. Much success to you here.
Up voted and your upvoting my newest content about my love for art , I will feel appreciated.
Thanks for sharing and answering questions like this, this is great. I can't wait to see the guide dog answer, that's what I would have asked about. My daddy is color blind and has been losing most of the sight he does have as he ages, it's so scary sometimes. He would never consider a guide dog whenever we mention it though, says he plans to just stop going out and doing so many things.
Oh and that dream video may have another answer for the question of why so many of the blind have sleep issues... it says those born without sight have different REM sleep, so maybe that's connected and actually what causes trouble.
Please tell your dad that a bad vision should never let you stop you from doing the things you like. There is always a way! :)
I've red a bit into the sleeping problems bu I thought it would made the post even longer haha. It is often seen as a sort of side effect from the visual impairment but it should actually be seen more often as a real sleeping disorder. From what I've read it has something to do with having a normal rhuthm/regularity. Such as going to bed at the same time every night. This applies to the people who still have some sort of vision like me, the video is also about people who never saw anything at all.