I have always loved words, but some are just extra special, like Marzipan. It has a little of everything; a little yum, some zing and decadent pleasure. I love the way it looks on the page, the way it sounds and the way if feels on my tongue. But these extra special words also make me think of how much I have to lose as I lose my vision. Although I will still be able to hear the words and feel them roll across my lips, I can’t imagine a life in which I can’t read the words on a page. A time when I won’t be able to see the words that I write.
The loss of the ability to read was my first fear after being diagnosed with RP. I have been blessed, thus far, with a very slowly progressing case of the disease, but there have already been changes in the ways and conditions in which I am able to read. I used to love to read on the bus; it was a great way to pass the time and a deterrent for some of the nut jobs that feel the need to chat. As my vision has gotten worse and my prescription subsequently stronger and my light sensitivity impossibly extreme, reading on the bus during the day is no longer an option. I can’t read with my glasses on because they are distance glasses ( it really is a crazy strong prescription) and I can’t take my glasses off because I can’t bear the exposure of my naked eyes to the sun. I also can’t text, write or see anything on my cell phone. If I can’t feign sleep, I am fodder for the crazy chatter.
I used to be able to read anywhere for any length of time; reading for hours has always been one of my favorite pastimes. Now, I can only read if the light is just right because I can’t see in darkness or brightness. Also, the actual text has to be big enough, or the strain of trying to focus on the page is so exhausting, I am only good for about five minutes. I will admit that I tend to overdo it and end up with aching eyes that can only be soothed by a dark room and some cold compresses.
As far as reading on the computer, this was where the changes first reared their wicked heads. The glare of the screen, coupled with the effort of focusing on the letters and words, is a pain fest waiting to happen. So, I have learned to take frequent breaks and never try to read documents that are too lengthy; those get printed out so I can read them the old-fashioned way and I print all my own work to do edits and re-writes on paper. I know there is no iPad in my future because I will never be able to read a whole book with the bright white screen taunting me, but that is ok because I am still in love with real books.
So, I adjust and try to ride with the changes in my vision that force the changes in my habits and although I still feel afraid of the day when I won’t be able to see the words, I will read and read until the darkness has taken me completely.
September 7, 2011 at 6:54 am
Have you tried reading with a Kindle? There’s no backlight (brightness) and it seems you can adjust the fontsize to suit your prescription. Just a thought. I’ve become hooked on audio books so that’s my reading drug of choice.
Glad to see you writing 🙂
September 8, 2011 at 3:27 pm
Hi R. So nice to hear from you. What happened with the job dilemma? I will check out the Kindle; my niece has one. I am getting into the audio book thing too and my husband has a ton of them which he loves to listen to at night. Thanks, as ever, for your support. And write, my friend, write; you have a talent.
s
September 12, 2011 at 3:38 am
Was hoping you hadn’t disappeared into the internet ether like so many others.
I used to regularly correspond with a blogger in Baghdad in 2004. Then they went quiet. Always wondered what happened to them. Hopefully not the worst.
Thanks for the encouragement. My wife agrees with your last sentiment – she keeps kicking my butt about it ;P
September 12, 2011 at 4:33 pm
You have got a good wife there!!!!! I hope you friend is ok too.
February 3, 2018 at 12:31 pm
I have been wondering…how do you blog and read? Do you notice emoji’s in comments?
February 3, 2018 at 12:49 pm
I have written more on this recently, but I am really lucky in the world of RP in that I can still read. Yes, I can see the emoji’s HaHa! I just haven’t figured out how to use them when I am commenting.
February 3, 2018 at 12:52 pm
OK good.