After the introduction, I feel that I should give a short
correction of the description of light sensitivity from the video in my first
post. And then I will tell a few amusing and frightening tales of how hard it
makes it to move freely outside.
I posted the video in excitement that somebody had portrayed
a pretty good estimate of the amount
of light glare I see. But it is a little misleading still. I can’t remember if
it was through www.achromatopsia.info
or the Achromatopsia Network (www.achromat.org),
but I did see a pretty good description somewhere.
You know those little cartoon flip books that show movement
if you flip it fast enough? It’s sort of like how real film footage was a bunch
of little pictures? Imagine if you cut out 90% of the pictures, but still left
in all the run time, like getting one little frame out of several seconds of
frames. And that one frame is unclear and way too bright, just enough to get
general positions of things but definitely not to see any detail. That’s what
it’s like. Have you ever noticed that when you look at a light and then close
your eyes, you can still see the image? The reason such strong light
sensitivity requires constant blinking is not because it physically hurts to
have my eyes open. It’s because I literally cannot see anything with my eyes
open in daylight (I mean absolutely nothing but light). What I see is the image
left when my eyes are closed for a split-second blink.
As you can guess, that makes for rather uncertain
navigation. That’s why I could trip and fall over a boulder the size of a
medium dog, or stroll right off a three-foot retaining wall, or nearly walk
right into one of those pits in a mechanic’s garage, or do a face-plant at full
speed on the cement front porch as a small child. One of my most embarrassing
mishaps outdoors was the time I ran into a railroad crossing guard. Yes, ran into it… on foot. I used to walk to
school in my little rural school district, and I always had this irrational
fear of the train tracks. Rational if a train is coming, but not so much if the
guards are just down and there’s no train. I mean, it’s not like a train can
sneak up on you. It didn’t matter. I ran across just to be sure, not realizing
that the little guard thing over the sidewalk was down. Did you know those
things come off? Yes, it skiddered across the school parking lot. I was so
startled and mortified that I just kept running all the way into the school. :
)
This kind of glaring sight can mean a lack of depth
perception when it comes to steps and ledges. So, you may be surprised to learn
that I’ve hiked the Grand Canyon (and other significant landmarks!). Don’t
worry. It wasn’t as dangerous as it sounds. But let’s just say I gained the
nickname Crash with all my friends at that time. I know this is profound, but
the Grand Canyon is pretty rocky, meaning lots of things to trip over. And trip
I did, over and over. After the first couple of times I thought, How on earth am I going to make it 10
miles!? This just isn’t fair! Yeah, it’s hard not to think like that. But I
had to make a decision. I wasn’t seriously hurt, and I was hiking with a team
of people willing to help me. So, I got back up, swallowed my self-pity, and
decided to enjoy it, scrapes and bruises thrown in. And I did! And our team
made the quickest time to the campsite at the bottom of the Canyon. Win. : )
Yes, win. I know it sounds like some cheezy meme with roses
and rainbows, but winning doesn’t mean not failing… or falling in my case. The
truth is that the world does not rise and fall on my success and failure, and
it’s still waiting after every time I fall flat on my face (even if I have to
have oral surgery and braces for eight years, which has happened). The one
thing that I think God has given to me through this disability is
determination. I get pretty upset and scared by set-backs, but I’ve also had to
struggle and trust God in the smallest things. And the experiences of fear and
failure mixed with trusting for God’s strength to try again is a perfect recipe
for success. It reminds me to be humble (because I definitely need it!). It
reminds me to be bold (yes, that can go with humility). It reminds me that it’s
not all about me and my ability. It reminds me of what the apostle Paul said
about what God did in his life through a weakness he pleaded to be rid of:
“9 But he said to me, “My grace is sufficient for you, for my power is made perfect in
weakness.” Therefore I will boast
all the more gladly of my weaknesses, so that the power of Christ may rest upon
me. 10 For the sake of Christ, then, I am content with
weaknesses, insults, hardships, persecutions, and calamities. For when I am
weak, then I am strong.” 2 Corinthians 12 (ESV http://www.biblegateway.com/passage/?search=2%20Corinthians+12&version=ESV)
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