On the day of my diagnosis and the sparkly intro to the world of RP, people kept putting drops in my eyes. Everyone seemed to want to make sure that I had received enough drops to ensure maximum retinal view. I think I had five rounds of drops total; one set of numbing drops and four sets of dilation drops. It was the latter set that decided to stick around and fuck with my head for a while.
When I woke up the day after Dx day and my eyes were still sore and my vision was still blurry, I wasn’t surprised and I was preoccupied with my friend Lisa, so I didn’t give it much thought. That night, going to bed with blurred vision, I figured it must be all the extra drops and that my eyes would be back to somewhat normal in the morning. That was not the case that second morning, nor the third, nor the fourth.
After days of wearing sunglasses everywhere I went, outside and inside, including to Lisa’s fathers memorial service, I decided it couldn’t possibly be normal for someones eyes to stay dilated for five days; I called Dr. Heckenlively and he called me back within thirty minutes. He asked about the extra drops and told me it wasn’t unusual for the eyes to stay dilated for a few days after multiple rounds of drops.
A few days? Try seven.
Stories From the Edge of Blindness 
June 1, 2010 at 9:02 am
I presume (hopefully) and given that you wrote this post that your eyes are back to ‘normal’ now. I’ve had the blurry eyed thing many a time, thankfully it only lasted a few hours. They must have nailed you with a lot of successive tests to want to drag it out for so long.
The visual field one was still the worst, not in terms of pain but because of my denial. I even deluded myself I could cheat by pressing the damn button when I thought it should be pressed. Then I got pissed off that the machine had some broken LEDs and was under powered cos the little lights were so dim. Ah well, the power of self-delusion at it’s best.
Thought I would resurrect and re-purpose a blog I started a while ago. Your poem inspired me 😉 http://zambok.wordpress.com/
June 2, 2010 at 12:45 pm
I totally agree about the visual field; it is the test that tells you what you don’t want to hear. Every time I have one, I find myself pressing the button like crazy, just hoping that I will occasionally get it right. It completely fucks with your head.
When were you diagnosed?
June 3, 2010 at 4:03 am
Pffft good question. I’ve always known there was something not right. Running into walls at twilight at the age of 10 raises a red flag at the back of the mind. My father told me he had it so I might have it too when I was 23. I ignored that for a while, then got a solid diagnosis about 5 years ago. I’m 41 now. So I’ve been ‘dealing’ with it for 5 years. You?
June 3, 2010 at 12:08 pm
I just turned 41. Was officially diagnosed at 33. I was also told in my 20’s that I might have it, but I blew it off because no one in my family even wears glasses. I am at about 20 degrees in each eye and I stopped driving about six years ago. Some days I still feel total disbelief that I have RP at all; it seems impossible and then I get reminded by something that creeps up on me out of nowhere and trips me up.
June 4, 2010 at 2:29 am
I’m not sure how many degrees vision I have. Strangely out of the battery of tests I’ve undergone that wasn’t one of them. I suspect it may be only slightly more than 20.
Instead they gave me some sort of printout indicating the nerve response across the surface of the retina. Obviously, the peaks were toward the centre and the edges, well, useless.
Yup, the loss of the driving thing was what forced me into facing reality. I used to love the freedom of driving and getting out into the country every weekend with The Doors or Dylan or something else blasting out.
Now it’s walking with my headphones.
June 20, 2010 at 9:50 am
Hiya,
I haven’t been on here for a bit. How’re you doing? you sounded a bit low. No need to explain.
My name is R h e t t. I live in Edinburgh, Scotland.
I would hate to live in a place like LA without a car. From what I’ve heard, it’s very neccesary there. Thankfully, I have a good public transport system I can rely on here, so I’ve become a bus-oholic.
I get pissed off not being able to contribute to our life by not being able to go do the shopping, pick/drop people off, or go hill walking, sailing, to the beach (yes, there’s beaches here that one can lie on for about 1 day a year) with my mates. There’s a lot of things I’d love to do, but feel guilty about asking people to be my taxi. So my world has shrunk a bit. I expect it’ll just get worse.
I have been trying to think of something worthwhile that I can do with myself in this state. A project to inspire myself with. So far not much has occurred to me. Perhaps I should have a bottle of wine 🙂
Keep writing by the way. I want to hear more. Did you go for a cataract op? I’ve been. Was actually not a bad experience. And apart from losing the ability to shift focus in that eye, it was a good idea. Now for the next eye!
Do you write other stuff?
R
July 10, 2010 at 8:24 am
HI Rhett –
Now I have been away from here for a while; I visit so sporadically. I get these sort of bursts where I really want to right and then I feel silenced by life. I think some people call it writers block.
I totally get what you mean about a project; this blog thing was supposed to be mine, but I have trouble with the whole follow through thing. I am a big fan of the bottle of wine as substitute. Some nights I get to feeling so stuck in my house; my fiance works at night and the whole night blindness thing gets in the way of going out; and like you I don’t like to always ask my friends to come and pick me up. In the next couple of years, we are definitely moving somewhere with better public transport.
Very cool that you live in Scotland!! My fiance grew up in Ireland and England and we will definitely be traveling to that part of the world after we get married next year. My fantasy is that we will stay.
I am really glad to hear that the cataract op was a success for you; I have been wanting to do it, but my doctors keep telling me that the cataracts aren’t ripe enough, whatever the fuck that means. I am going back in a month or so for the whole battery of tests, so I am going to bring it up again. I would love to have my remaining central vision to be unclouded.
I have mostly written poetry, taken some frustrating stabs at fiction and now trying the memoir thing. I am hoping this week will find me once again, inspired.
susan
July 12, 2010 at 1:36 pm
Hi Susan,
I hear what you’re saying about the whole follow through thing. It’s got to the point where I won’t let myself say ‘I want to do xyz’ cos I get pissed off with myself for not following it through. I guess that’s a human condition thing,
If you’re ever in Scotland, we’d love to meet up with you guys and take you for a pint. It’s a beautiful part of the world. We moved here after living in London for about 10 years. A city like that is awesome in your twenties, the vibe, the opportunities. But after a while the constant crowds, rushing, and time spent commuting get one down so we decided to leave for a better quality of life. Sure the money’s less, but this very limited life that I suddenly want to live more feels more worthwhile. Baaaahh, who am I kidding, I started getting older! Hehe…
Later,
Rhett
July 13, 2010 at 11:08 am
HI –
We are always up for a pint or two!!!!!! I keep trying to find ways for us to leave the states and move back to Joe’s home town, but the work thing keeps getting in the way. Part of the reason we want to leave LA ( and there are many reasons) is that we also are ready for a mellower way of life. It is really strange for me, being in my forties; some days I just don’t believe it’s true.
-s