It’s been a while since my last post, mainly because the day
to day life doesn’t seem connected to being an achromat. It’s perhaps one of
the best blessings of this condition that you have to learn to just overcome without
giving it a second thought even in small things.
But I have big news. I finally called the Low Vision Centers
of Indiana this summer, and I went for my first visit last week. I was
overwhelmingly pleased with the results.
First of all, I don’t know if the people working there know
what a big deal this is. Maybe they do, but it must be hard when it’s your
usual routine to remember that even going to an eye doctor’s where
achromatopsia is understood and diagnosed is a first-time experience.
What I didn’t understand was how obvious it was that I am an
achromat. (It’s still strange to say it like that. I think everyone understands
that that’s only a label about how I’ve experienced the world a little
differently than others.) I asked if they would have to confirm that I have
achromatopsia, and the doctor said she’d look to confirm. But she also said
that achromatopsia is so unique in its light sensitivity (“no other eye disease
even comes close”) that she could walk into a crowded room and spot an achromat
without even talking to them.
Of course, the big news part for me and everyone else (because
the significance of diagnosis is probably hard to understand from the outside)
is the tinted contacts. If you don’t know, they offer prescription contacts
which are also tinted like sunglasses. What I learned when they put in the
non-prescription trial lenses was that even I had no idea how much the light
sensitivity affects me. I was grateful that my dad and one of my closest
friends came with me. The stunned looks on their faces when they turned the
lights up with the lenses in was even more surprising than being able to see
more normally. They just kept saying, “You don’t understand; your demeanor
instantly changed, and your face just looked so much more relaxed.” Even
indoors in “regular” lighting, the change was dramatic.
From my perspective, it wasn’t a totally new experience. I have
had good indoor settings, but they’re usually pretty low lighting, and I just
got used to struggling a little in regular lighting. After we took them out
though, I noticed how much frustratingly brighter the normal office lights
were. Sometimes you just need to see how much better things can be to know how
difficult they’ve been. But the biggest change was outside.
The people at the Low Vision Center understand achromatopsia
pretty well, but I think their description of the light sensitivity could use
one important correction. Being outside in daylight is like having only intermittent
snatches of sight. It’s not just the glaring light everywhere and the reduced
field of vision that are the problems; it’s that the constant blinking prevents
a fluid motion of vision. I’ve
described it before like chopping out half of the frames in a strip of movie
film or like flipping slowly through one of those movie-like cartoon flip books
with half the pages missing. A lot can happen in a split second when you’re
trying to navigate the world outside. With the lenses, I still needed
sunglasses, but the picture was finally
continuous! I could look around me with my eyes comfortably open and
constantly taking in what I saw without significant interruption. This is
probably one of the best changes of my life. Maybe my family and friends won’t
have to defer to my need to be inside anymore! Maybe I can even get around on
my own like normal! We’ll see how far this goes once I get the prescription
lenses (in less than two weeks!).
Finally, I have to say a few words about how impressed I was
with the doctors at the Low Vision Centers. We drew out from the doctor how
these lenses came about (I’m not sure it would have come up otherwise). Though
she explained that they came up with these lenses and have been tweaking them
for the last several years, she seemed to downplay what a big difference she and her colleagues have made. I’m sure it’s because they can see what a simple concept it was and that
they just happened to be the first to give it a try. But I could tell that it
came from a simple effort to find a solution, try new things, and work to help
those in need. And I am extremely grateful. I mean, I know this is also their
business, but probably the best example of good business, and probably good
medicine, is to find the best way to make what your customers/patients want and
need.
Anyway, I am extremely excited and counting down the days
until we go back to get my lenses!
I’ll update sometime about how adjusting to my new sight
goes.
Also, here's a link to their page on the lenses: http://www.achromatopsia.info/
