How much difference does a little difference make?
In a departure from my normal technology related posts, this one will be about something far more personal; if you aren't interested, feel free to stop reading here. This will most likely just be me pondering and getting nowhere while asking questions of myself along the way.
What follows is a description of my eye condition and a recent development (I say development because it sounds better than "what the fuck just happened!")
While I'm pretty sure I've made this info public on my about me page, in case you didn't know, I'm blind. Normally this doesn't get mentioned; it usually isn't rellavent to what I'm talking about (unless, of course it is, in which case I'll mention it). I generally don't go around telling people, to me it's just another attribute about myself, similar to hair color, hight, etc. I won't pretend it stops there though, there are most certainly things I can't do that other people with no visual impairment can, there's a difference in how I get around and do things... But as a hole I'm content with the way things stand.
So why, you might ask, am I bringing up such a mundane yet life-altering topic (for me, at least)? The answer... I'm not sure. To diverge for just a second here... I usually write with a purpose. Either it's some code for a project, which performs a task that I think needs to be done (and not by me since I'm just lazy like that); to talk about something I think is particularly interesting; or to guide others or (at a later date when I forget things) myself through installing something, getting it working, etc etc. This time... I'm not sure. I don't really have a plan here. No steps to follow... No end goal of this post. I think I'm venting. Yeah, totally venting. Like I said, not your regularly scheduled programming (wow that one was aweful, where do I get these). Oh yeah, I did want to explain my "recent development".
I have an eye condition called Leber's congenital amaurosis. I'll use the description provided here, because it does a better job than I could:
Leber congenital amaurosis is an eye disorder that primarily affects the retina, which is the specialized tissue at the back of the eye that detects light and color. People with this disorder typically have severe visual impairment beginning in infancy. The visual impairment tends to be stable, although it may worsen very slowly over time. Leber congenital amaurosis is also associated with other vision problems, including an increased sensitivity to light (photophobia), involuntary movements of the eyes (nystagmus), and extreme farsightedness (hyperopia). The pupils, which usually expand and contract in response to the amount of light entering the eye, do not react normally to light. Instead, they expand and contract more slowly than normal, or they may not respond to light at all. Additionally, the clear front covering of the eye (the cornea) may be cone-shaped and abnormally thin, a condition known as keratoconus. A specific behavior called Franceschetti's oculo-digital sign is characteristic of Leber congenital amaurosis. This sign consists of poking, pressing, and rubbing the eyes with a knuckle or finger. Researchers suspect that this behavior may contribute to deep-set eyes and keratoconus in affected children.
Goddamn that feels weird. They pegged it, right on the mark. Go researchers... Well not completely, my pupils (as far as I know) react normally, I'm not really light sensitive, and I don't think I'm farsighted (but how would I know... Right?) As for the "Franceschetti's oculo-digital sign", they got that one right as well. It's weird; it's not something I consciously do, kind of like a posture you might automatically adopt and always try to correct yourself on. It's been a long time since I've really done this, though sometimes I still catch myself falling into old habbits, so that makes what just happened all the more confusing. As for the "keratoconus", I think I have that as well and it might be the direct cause of this post.
I've had this from birth, so I've never seen any other way. In some respects I feel this is better than, say, those who have to gradually notice their usable vision being whittled away, day by day, hour by hour, by time, a disease, or some other form of vision loss. In other ways, it's definitely worse. I don't know what colors are, for example. I can only see in black and white, and different shades of both (please, refrain from making the obvious joke! :P ). I also can't see much detail (this is probably unclear, I don't have the vocabulary for this).
Up until now what I see hasn't changed. As I've grown older I believe I've been able to interpret what I see to a better extent; my theory is that it took longer due to others descriptions of objects differing from mine so much. However, about an hour ago now, I looked up and noticed a... Ring, is the best way I can describe it around the center of the visual field in my right eye. WhenI get up close to something, it goes away (or becomes so small or indistinct that I'm unable to notice it anymore). I don't know why this just happened. Any ideas I come up with don't seem to make sense and the only thing I can reasonably believe is that it happened gradually and I just haven't noticed it. Even that doesn't quite ring true with me though; I feel like I would have noticed something like this.
Upon further inspection and to my rising worry, things seem to get blurrier (is that a word?) in my right eye the farther I move away from them. At this point I'm kind of freeking out. I mean if I look at it objectively (really blake? Sight jokes?), I don't notice that much of a difference in my"usable" vision. I wasn't exactly reading the latest fast food menu before now, and I'm pretty good at orientation and mobility with a cane, though practice makes perfect, or at least helps me cross streets safer, which is just fine with me.
So... What does this really change for me? Nothing, as far as how I'll get around and perceive my environment. I still have all my vision (or, most of it I guess with the blurring), I still rely on sound much more than anything, and I didn't really lose anything that I know of. But it scares me, to be honest. In the back of my mind I just keep hearing a line from that genetics thing I linked to:
"The visual impairment tends to be stable, although it may worsen very slowly over time."
Slowly over time? How slowly. How much time. Ugh.
I wonder if, when I go to sleep, I'll wake up in the morning to find that my vision is back to normal. Oh how I would laugh at myself for writing a rant-ish blog post for everyone to see about how my sight got a bit blurry for a bit there and how a ring showed up in the visual field of my right eye. Boo hoo! Talk about over reacting. Somehow though... I don't think that will happen. The slight yet annoying itch that I at first thought was just in my imagination is definitely real. As I stare at the status light on this raspberry pi, I see a ring around it. When I'm closer than 3 inches, it goes away, and when farther than about 5 feet it becomes indistinct. Maybe the weirdest thing is that this is only in my right eye. I remember reading somewhere that the brain combines the images from both eyes, but I don't think I understood that until now. If I have both eyes open, there's a ring, even if the little status light is off to my left. As soon as I close my right eye... boom, what ring.
So to ask the question in the title of myself, how much difference does a little difference make?
I don't know. I feel like this will only affect my self-confidence when walking around unfamiliar areas, but this just happened recently, so who knows.
As a side note, I don't mean for this post to be a pitty party for me. In all actuality, this was for me, not you :p, though I feel like typing it and publishing it might eas some of my anxiety for some reason. I'll go to the doctor if this doesn't clear up (sorry sorry, horrible puns R us)...
If your reading this and you have thoughts or ideas on what might cause this in my case, of course feel free to "drop me a line", as they say.
Until next time...