Caught in the Middle

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.