I have had a hard time writing
this post. I tried a couple of times, but there was too much to say. So, I
think I’ll just tell the story of my recent realization. I can’t promise this
one will be brief and light-hearted.
Honestly (and thankfully) I
don’t think about achromatopsia. When you live with certain limitations, you
just learn to work around them, which can be both very good, and, in this case,
also bad.
I downloaded a book of excerpts
from members of the Achromatopsia Network recently (http://www.achromat.org/index.html).
I just happened to think of achromatopsia and realized it had been a few years
since I did any research on it. What I read reopened the feelings I had when I
first discovered the disorder as a high school student: shock that other people
experience exactly what I experience, surprise that I have never talked to/met
anyone else like this, and relief that someone understands my unique challenges.
I mentioned in the first post
that the two biggest challenges of achromatopsia are the light sensitivity and
the social barriers. I am going to attempt the more difficult description of
the two. I know to people who don’t have this, it’s probably just some random
disorder, but I promise I’m not just complaining. There is a unique combination
of circumstances that makes for pretty daunting social difficulties.
But before I get to that, I will
pause to explain why this was such a helpful realization. I’m just going to go
ahead and admit that I haven’t always been (and am not always now) the most socially
adept person. Some of that is probably background (a lot goes into a person’s
confidence), and some of that is probably personality (I’m more of a reserved
type). But I’ve always felt the pressure to be more socially skilled. Maybe it’s
a cultural thing, but we don’t seem to have much grace for awkward interactions
and imperfect personalities. When I read some of the accounts from others with achromatopsia,
I realized that I hadn’t given myself
some grace for having extra barriers that others don’t have. So many others
with achromatopsia said that they felt more reserved than they would be without
it. Some even said they felt isolated or severely misunderstood. It can be hard
to know when we’ve begun letting our weaknesses become excuses, but there’s an
opposite extreme too. These stories definitely helped me let go of some of that
pressure.
I have just one more side note
before I describe the social problems themselves (I warned you this was a
difficult and lengthy post : ) ). Some of what I read from other achromats was
probably dependent on the level of support each individual had. Some got picked
on more than others. Some people had more supportive families. Some lived in
earlier generations when people with disabilities weren’t given as much
official recognition and help. I believe there were things my parents did to
help me. My mom helped me understand that kids making fun of me did not truly
represent anything about me. In fact, she insisted, it probably revealed
something about them, that they weren’t confident, that they lacked understanding,
that they may have been hurt by someone else, that they just wanted to fit in
by putting someone else down, etc. I also think I was just blessed with a good
dose of oblivion too, because I didn’t notice some of the mistreatment from
others (I am one of those people some would describe as having my head in the
clouds).
Anyway, on to the main point. The
best way to describe it is to use the general idea others have used, that
having achromatopsia means being caught in the middle between disability and
normal vision. Being legally blind (most full achromats are right on the edge
of legal blindness, about 20/200 vision), means that you can do most things
with the appearance of being a
normal-sighted person. Many of the people whose stories I read expressed a
natural inclination to try to be as normal as possible. I think any human being
can understand that. But being legally blind and subject to varying degrees of vision dependent upon varying degrees
of light means there’s no telling when you’ll be able to see like normal and
when you won’t. A white room full of fluorescent lights, a big window (nice to
most people), or a lighted sign or screen can suddenly make things impossible. Actually,
reading anything in any lighting is more difficult. And so is interacting with
others.
Have you ever heard someone say
that the majority of communication is non-verbal? Well, that’s great unless you
miss most of it. Catching facial expressions, recognizing people you meet in a
hallway, waving to a friend as you walk to work/class, or recognizing eye
contact are all difficult or impossible. When you don’t have these forms of
communication, and you know others do, it is often easier to just withdraw from
interaction until you’re face-to-face with someone. I was relieved to find out
that others with achromatopsia were also misunderstood as aloof or stuck up,
because they couldn’t communicate normally. I was also relieved to know that
others faced the dilemma of how to let people know about their vision. I
started telling people I met on my college campus that I was legally blind, so
that they would understand if I didn’t respond to a greeting across a crowded
room. But people usually don’t know how to respond if you just flat-out tell
them you’re blind. It’s kind of awkward. So in other words, awkward if you do,
awkward if you don’t. I can’t tell you how many times I’ve realized at the
sight of a fading smile that I totally “ignored” a silent greeting, or how many
times I found out someone thought I didn’t like them because I didn’t wave, or
how many times I introduced myself to someone who saw me regularly in a setting
where we weren’t close enough for me to recognize them.
And the list goes on. Other
people with Achromatopsia expressed anxiety over suddenly looking odd when they
start reading in public. Some said teachers didn’t believe they really needed
help, because most of the time they acted normally. Asking for help at all can
be difficult. Reading wall menus or signs, finding my way into or around inside
a building, crossing a street, recognizing the correct bus, following
subtitles, reading a PowerPoint presentation, and even recognizing food at a
buffet are all tasks that often require help. And I tend to have a strong
independent streak, so sometimes it leaves me feeling a little inadequate.
And I let all of this define me.
I let myself believe I was just failing somehow at interacting normally. I had
trained myself to be so “normal” that I forgot I wasn’t. I had hesitated to
talk to people in bright places or in crowded social gatherings, because I
thought I wasn’t good at it. In reality, I am secretly (to everyone else)
unable to connect as easily until the conversation has already begun. And even then it can be difficult, depending on the setting. If I would
show any of the usual signs of being totally (or nearly totally) blind, people
would understand. But I don’t, because I’m somewhere in the middle. And I’m ok
with that. I’m ok with missing out on lots of regular interaction, because I’ve
learned to care about the people that I do get to know. I’m still learning to
let go of the not-so-great interactions. I’m still learning to focus on others
instead of myself, to make the most of the people who do make it past the
barriers. I’m still learning when it’s appropriate to announce (however awkward
it may seem) that I have these visual impairments. But I guess life is not
about appearing perfect. I am convinced that I have been unusually blessed with
some very good friends and family, so I think I can call that a success.
Kristi - as your Dad, I, of course, am first most proud of you and of the manner in which you are sharing your intensely personal experiences in an effort to raise awareness for others who share your challenges. Secondly, though, having read this post, I have come to the realization that this is so important for families and friends of individuals that have this disorder to read and internalize. You see, I have been there through all the years and know personally and some times painfully how much effort you put into conducting yourself as "normally" as possible. I was there when you shunned the large print textbooks and with great effort and difficulty chose instead to read the normal print (which you did quite successfully, even though it took a much greater level of focus and effort... and time), I have been on many occasions as we travel in fast-food restaurants and have, myself, forgotten that you simply can't read the menu boards... even to the extent that you went without when restaurant didn't have what you wanted to order (thankfully, though, there are drive through windows to fix that), and I have been there when you are drawn into a curious examination of structural beam at a crowded ballpark only to have the other nine people with you walk on leaving you behind (and you will never know the anxiety and fear that stabbed into my heart upon realizing you were missing...thankfully, though, you knew what to do and you did it!)
ReplyDeleteMy point is this, everyone that has a family member or close friend that suffers with achromatopsia should read what you have written. Because you, dear daughter, did such a good job of "pretending" to be normal, that at times even I forgot that you had special needs, much to my own shame. That we need reminding is a stark statement about how pretending to appear normal in society, while it may make someone that suffers from this disorder feel less "odd" to others, it also adds an additional layer of challenges that perhaps are not necessary.
You are who you are. God created you that way for a reason. Your special talents, abilities and yes, even your disabilities, make you uniquely who you are. "Normal" is not a level to be achieved any more than "average" is. Be yourself, rejoice in who you are and know that, while you struggle with things that most people never even pause to think about, you have been gifted with a special and unique view of the world. I have often said and still do with all my heart that I would love to be able to, if even for a moment, dee the world through your eye!