Almost every RPer I have met has bad eye days; my bad eye days are most often due to light exposure or over use of my eyes. I have been thinking about this lately because I have gotten some questions about my reading and writing capabilities, in regard to my vision loss, and because I have been having more bad eye days.
I have always loved to read. When I was a child and my family took plane rides, we all got to choose a book to take with us on the plane; it was my favorite thing about traveling. I loved going to the book store and spending hours carefully choosing which book I would take on the plane. I was also terrified of flying, so having a book to read transported me to another world where I didn’t have to think about being thousands of feet in the air.
From the time I learned to read, I read voraciously. I remember when the final Harry Potter book came out and it was delivered to my house; I read the whole thing in a few hours because I wanted to finish it before I heard anything about it on social media or the news, and then immediately started reading it a second time to catch all the things I may have missed on the first read. That book was probably the highlight of my year that year; is that sad? Oh well. Potter Rules!!!!!!
You get the point, I love to read. As I have written in other posts, I am incredibly lucky that I have pretty good central vision and can still read. Most people know about 20/20 vision and how that is the ideal, and most people I know who wear glasses get their vision corrected up to 20/20. For me, without my glasses, my vision is about 20/300, but with my glasses, my vision can be corrected up to 20/35; this is really fortunate for someone with RP, but even for me, reading has its challenges.
If I spend more than 20 minutes (sometimes much less) looking at a back-lit computer or tablet screen, my eyes start to sting and burn, and I will often have to close my eyes to rest them for an hour or so. Of course, there is a wonderful remedy to this, which is inverting the colors on the screen; right now I am typing on a black screen with sort of peachy beige text. However, even with the screen colors inverted, if I am at the computer for too long, they will hurt simply from over-use; I have to make sure that I take my eyes away from the computer every 15 minutes, and I am not great about doing that.
As far as reading books, I have a lot of trouble focusing, due to both the RP and cataracts, so I can’t read real books, newspapers or magazines anymore without ending up in serious pain. Trying to focus on small print is way too much work for my eyes, and reading glasses just make it worse. So, thankfully, I have my kindle, which has no back light and the capability to increase font size, but even on the Kindle, my eyes will start to ache after about an hour of reading. The thing is, I can get so engrossed in a book that I don’t pay attention to the time or the fact that my eyes are hurting, and I pay for it the next day. I have had days when I can’t look at anything, even in dim lighting, for more than a minute without experiencing pain. Unfortunately, RP hasn’t taught me how to make better choices when it comes to over indulgence.
Another big culprit in a bad eye day, is spending too much time outside. Whenever I go outside, I wear a big hat and sunglasses, but even with my eyes protected from the sun, if I spend a day outside, I inevitably spend a day in bed with my eyes closed. I used to love to take long hikes, but I can’t do that anymore because of the sun; and let’s be honest, I probably shouldn’t have been hiking on my own anyway, given that I can’t see what’s going on around me. So, basically, any all day outdoor events are something I dread, and don’t even get me started about the beach.
I can’t deny that when it comes to my vision and my life choices, I can be reckless; it is in my nature. I like to do what I want and I have often paid the price for my stubborn ways, but as my vision gets worse and my RP symptoms increase, I am having to quell my rebellious side and pay attention to what my body is telling me.
Over the past year, I have truly dedicated myself to a writing life, which has been amazing, but it has also resulted in more bad eye days. I am spending more and more time, not only writing blog posts, but also working on my poetry, writing stories and reading the work of countless amazing poets and writers. I feel inspired and uplifted and incredibly motivated, but I realize that a bit of scheduling is in order. Scheduling is such a pesky word (pesky is a fucking awesome word), but for the sake of my eyes, I have to find some reading/writing and life balance. I have to give my eyes some TLC and give myself days away from the computer. I need to take breaks and pay attention to time. I need to stop fighting my RP, but it is going to be hard.
January 10, 2018 at 9:03 am
Have you tried speaking software in your computer ? My son has been using it for more than ten years.
January 10, 2018 at 9:08 am
I haven’t tried it, but it is always in the back of my mind. I am not quite ready for that step, but I know when I am, it will be so helpful. I feel like I want to use my eyes as long as I can, just be a bit kinder to them. Does your son really like it? He is a scholar, yes? He must use it a lot. What program does he use?
January 10, 2018 at 11:44 am
Yes. He was never able to read on his own. I used to read out to him books, fiction, non-profit, fiction and his study books till we bought the software. That made him independent, he was able to access the internet. He could read all that he wanted to read and write. He uses JAWS,
https://www.google.co.in/url?sa=t&source=web&rct=j&url=http://www.freedomscientific.com/Products/Blindness/JAWS&ved=2ahUKEwipyYrek87YAhXICJoKHY1SA1UQFjATegQIERAB&usg=AOvVaw0v9wbRcsDQqlldKIFDLoAY
January 10, 2018 at 1:25 pm
He sounds amazing! And I know he comes from an extraordinary family!
January 10, 2018 at 12:20 pm
Ah, I must relate this to my own experience. If I sit in front of the computer too long, I can get back pain, and skip my necessary exercise walks, much to the dismay of my golden companions. If I do this often (which, lately, I do) I begin to regret it as I find myself enlarged in waistline as much as I am in vocabulary, and I limp a lot more. Plus, the dogs chew things up because they’re restless.
It appears we all must make a better effort to take care of ourselves, eh? 😊
Another brilliantly written and illuminating entry, Susan. Thank you!!
January 10, 2018 at 1:29 pm
I know we should, but why is it that we have to get so creaky as we get older. The pugs also protest if I am at my computer too long! How is the vegetable thing going in your house? Joe and I are well into it now, and I have been giving the dogs green beans and peas with their meals. Thank you for your kind words and generosity!!!
January 10, 2018 at 6:04 pm
Going well! We’ve done meatless stew, veggie pizza, and we did a full-on vegetable stir-fry, rice, and salad meal yesterday! Mrs C makes it SO tasty! Ain’t missed it in any of the meals yet!
January 11, 2018 at 6:57 am
Yum! I am going to have to pass on the idea for the pizza and stew to Joe; he is the cook in our house!
January 10, 2018 at 12:48 pm
Fascinating and inspiring as usual! I really appreciate the time you take to read my nonsense lol
I am so happy you are writing, I find your voice truly fascinating and captivating. I’m legit hooked!
January 10, 2018 at 1:31 pm
You are so terrific Mandi and you have impacted my life, and lots of other people’s lives. You are making a difference and doing it with a ton of other shit to do every day, and health struggles. I am grateful that you give your time to reading my blog!!! Thank you for your support!
January 10, 2018 at 9:46 pm
Thank you for sharing this post! I had so many questions but would’ve felt like a dumbass for asking… You are truly inspiring!~Kim
January 11, 2018 at 7:01 am
Thank you Kim! And, please always feel free to ask anything. You are awesome!!!!
January 11, 2018 at 6:34 am
First can I say I’m right there with you on the Potter thing. I’ll never forget when my mom came home that evening with the last book. I was 20 years old and had been reading HP for 10 years at that point (remember when she was releasing them every year and then she did every two years with two of them? I thought I’d die when she did that). I sat in my room and read that entire book in like 7 hours. I stayed up all night and my eyes were itching and I kept on going. It was an AMAZING read.
And yes, please start giving your eyes some much needed TLC. I know what it’s like to rebel against things you can’t control. Sometimes when my legs get sore, I keep right on going and doing thinks I shouldn’t do and then invariably, I have to spend a day or two in bed. My husband always tells me to stop fighting myself. So let’s vow to listen to our bodies and be more mindful!! ❤️❤️❤️❤️
January 11, 2018 at 7:07 am
I am with you lovely lady; it is time for us to be kinder to our bodies! I know you totally get it. I love how even the mention of Potter can bring so much joy and so many good memories! Are your kids old enough to have read the books? I have read them so many times; they are my go to books when I am feeling down and need an escape from my own head. JK’s brain is way more inventive and interesting than mine. xoxoxo
January 11, 2018 at 7:13 am
I marvel all the time how she created an entire world in her mind. Those books are so interconnected and how she tied everything in at the end was brilliant. My son is 7 and he’s just getting into it. I’m trying to keep him away from the movies so he can read the books and hopefully love them!
February 12, 2018 at 2:07 pm
You continue to marvel me with your ability to bring me with you. Don’t ever stop writing.
February 12, 2018 at 4:38 pm
I am so thrilled that I am able to write in a way that does that for you; it is my goal and I hope that as I continue to write, I will continue to grow and be able to give to others in the best ways I can. I feel so lucky to be a writer; I know that it truly is in my bones and my blood and breath and without it, when I am not doing it, I feel lost and stifled. It is such a gift to meet and know people, like you, who feel the same.
February 12, 2018 at 6:46 pm
You have a rapt audience.
February 12, 2018 at 7:11 pm
I feel you will. It seems as though you are finally settling in comfortable with your voice and using it to truly relate through verse and prose.
February 13, 2018 at 7:32 am
I hope so! Thank you! I figure I just keep going and see where the words take me.
February 13, 2018 at 12:31 pm
I love where they are taking you. You sound more alive than you did. More comfortable with the challenges. Nor in control.
January 12, 2018 at 12:00 pm
Thank you so much for this Kim!!!! You have totally made my day!