What I Can and Can’t Do

I hope to make this post a practical answer to one of the other most common questions I get and a short commentary on what I think is a silly idea in society.

People often ask, “What can you see?” That’s a pretty hard question, since I could ask it in return. It’s not blurry or fuzzy to me, but maybe it would be to you. I don’t know. I don’t really feel like I should be able to see things better until it’s clear that I’m missing something others are seeing.

Anyway, that often leads to confusion over what I can and can’t see or do. My family still doesn’t always know for sure, so we kind of just play it by ear. When I was younger, they used to warn me about curbs and steps outside. Being stubbornly independent (and probably prideful), I used to get ruffled when I had seen it and didn’t need help. But I had to realize that it’s never going to be clear between us what I see and that they were just trying to help. So now I just gladly take necessary and unnecessary help. And this goes for everything else: screens, reading, finding my way, etc.

There’s also the long-term question of what I can and can’t do. Every kid is asked what they’re going to be when they grow up. I’ve since learned that this is a little misleading. Life is rarely one solid thing that you do (and hopefully we’re about something more than our careers). But that question was a special challenge when I was a kid. I couldn’t be a pilot, or a surgeon, or an interior designer, or a police officer, or… I couldn’t be a lot more immediate things either. I couldn’t be on sports teams (nor did I want to!) or get old enough to drive a car. My parents handled it well. They didn’t lie to me and say that I could do whatever I wanted. That would be nonsense. They did, however, try to think through what I loved and what I was good at and help me believe I might be able to apply those things. And, in the short-term, they tried to strike the balance between helping me and pushing me to try on my own. We didn’t always succeed at finding that balance, but eventually we got it. Or I should say we are getting it, because it’s a continual process.

The key was accepting what I couldn’t do and pouring my effort into what I could, with a dash of trying the seemingly impossible, of course. : ) The results have been fantastic. I was good at school (when I finally stopped daydreaming and applied myself). I graduated but still didn’t know what I wanted to do. I’m a Christian, so, whatever I ended up doing, I wanted to do it for God. I moved away from home (Ohio to Texas!) and worked with a youth ministry for a few years while I figured it out. I learned to work in office environments, navigating computer adjustments and window relations (we don’t always have a good relationship, the Sun and I : ) ). Then I went to college. By then, I knew that I loved to teach, and began to consider becoming a professor. I had also picked up a love of history and political thought, so I looked for those programs in a college. I (thankfully) decided on history. I just graduated this year with my BA in history, and I’m starting my MA in history this fall with an assistantship position. The goal is to become a history professor, specializing in colonial America and the era of the American Revolution.

That’s the big picture. But life is usually a collection of smaller adventures and connections with people. At this point, I feel it would be a disservice not to say that the thing that helped me most was my faith. Trusting God to give me what I needed, even when it didn’t look like I could move forward has been a growing process. Here’s a few of those adventures:

Traveling on my own used to be really frightening for me, and sometimes it still is. When I lived in Texas, I flew between there and home several times a year. I had to learn to pick up clues, ask for help, and not panic when things went wrong. And it became pretty easy. In fact, I’ve also flown overseas (though not alone) for missions trips. Daily traveling is a challenge as well. I lived in a small city for college until recently. I was scared about moving off campus, because my family had always driven me places (I grew up in the country). I didn’t know who would be there for me. I had to fight against the feeling that I was completely alone or that things weren’t quite fair for me. In reality, I was provided with the perfect gradual introduction to bus-riding, through unexpected friends and eventually a completely independent routine. Not being able to read the numbers on buses, not being able to cross some of the streets (this city had a serious lack of crosswalks), and learning to be able to catch my stop without being able to see the sign in time were all hurdles. But I did it. I learned to commute on my own, with a few mishaps of course. I would have never thought it possible when I was younger, but now it’s proving a life-long skill. I recently moved to a major metropolitan area for my MA. I am about to begin a new, and much larger, commuting adventure.

During my BA, I also minored in music. My family is very musical, but I had not received much formal training. I remember my parents attempting piano lessons when I was eight years old, but I was too terrified about not being able to read the music (I don’t like letting people down). I have this distinct memory of sitting on a piano bench at a lesson and crying. So, obviously, it didn’t last, but I wish it had. I loved music, and later I wanted to learn an instrument. I finally dove in again as an adult and took piano lessons. I didn’t know how to read music (other than a random handful of rules), so I started from the beginning. Two years later, I worked up the courage to audition for college lessons. And they gave me a chance! I definitely wasn’t any more than a mediocre pianist, but I made lots of progress. I might have found myself crying on a piano bench a few more times… a few hundred more times. It was terrifying again, because I knew I was at a double disadvantage (inexperience and visual impairment making sight reading nearly impossible). But I don’t give up easily, so I learned to memorize everything right away. I made it all the way through my minor, and I loved it! I ended by playing one of my favorite pieces: the 2^nd movement of Beethoven’s Pathetique. I took a few lessons afterwards too, and my new teacher enlarged my music as much as she could, and I discovered I had a natural ease with sight reading (I did have to sight sing for some of the other classes, so that’s probably why). I am so thankful to God for helping me through this. I learned so many important life lessons from the discipline and challenge of music performance. And I grew in trusting God to help me. I may have prayed more fervent prayers in those practice rooms than any other student. : )

Even majoring in history is a challenge. Reading is slower when you’re legally blind, and history requires a ton of reading. Again, there were many tears and lots of fervent prayers, and, again, I found myself on a gradual increase of trial and error, of faith and success. History, as it turns out, is not about reading everything anyway, though I do love just fully reading even a history book. By my last semester, I took on a heavier load than I ever thought possible before. Again, I was provided with unexpected history student friends/mentors and helpful professors and plenty of opportunities to take on more than I thought I could. And I get to do it all over again this fall.

And there are lots of other examples of doing what seems unlikely for someone like me. Aside from traveling, history, and music, I also love art and photography. Some parts of these hobbies are out of my reach, but I still love what I can do. I mentioned that I hiked the Grand Canyon. I’ve also hiked Pike’s Peak, and a couple of other mountains, and I biked down a volcano with my family in Hawaii. Lacking color vision presents a few challenges to cooking, but I’ve learned to love and succeed at both cooking and baking. Other college classes presented unique challenges. The on-the-spot explanations required for music theory and French made following what was going on in the front of the classroom a matter of reading ahead and piecing it together by what I heard. I don’t list these things to brag (I think I’ve provided enough not-so-glorious stories to give that balance). I hope instead to inspire others like me (or not like me) to not give up just because something’s hard to overcome.

So here’s what I take away from all of that. We seem to fall into two opposite errors when it comes to ability and opportunity. On the one hand, we say, “You can do whatever you want!,” which is silly and clearly not true. It’s more obvious with me, but it’s also true of anyone. We are not all the same. Everyone has challenges, faults, weaknesses. Everyone has strengths and individual passions. Admitting we can’t do some things and doing the things we can and love to do for more than just ourselves is the right way to handle them. But we also have begun to believe the error that the whole world should bend to our individual needs. This is not reality. I do appreciate what has been done before me to accommodate visually impaired people. But I don’t expect that one day everything will be perfectly fitted for my vision, nor would I want it to. Sure, it would be easier, but the challenge of overcoming has been a gift from God to make me who He wanted me to be.

Maybe it all sounds trite or forced to some, but I believe there’s more to life than just my accomplishments and my weaknesses. I learn to trust God with these small things, because I know I was meant to trust Him with the more important things: “6 So we are always confident, even though we know that as long as we live in these bodies we are not at home with the Lord. 7 For we live by believing and not by seeing.” (2 Corinthians 5, NLT - whole chapter here)

Colors & Quotes: The Light-Hearted Side

I decided after a more difficult post, I would share some of the funny and interesting things from my experience with achromatopsia.

The fun way that people find out that I have a visual impairment is when they find out I’m completely colorblind. Yes, I say fun. I mentioned before that I am not as disappointed about my lack of color vision as those who’ve had it would be. I don’t really know what I’m missing, and it’s actually very interesting to most people I meet. The discovery is usually followed by questions. Here are the most common ones:

1) How do you match your clothes? Seriously, that is the most common question. It’s not that hard. A little bit of memory, some basic principles, and help from a friend can get you a long way. : )

2) You don’t see any colors at all? Nope. Well, actually on rare occasions I think I have seen bright red and bright yellow. Red is usually in print, like in a magazine, or on a fabric. Yellow is usually a car or, my favorite, yellow leaves in fall. I love the yellow trees. They’re the only color that truly glows in my world. But again, this is extremely rare (a handful of times a year), and I’m not even sure if I’m really seeing color. I’m actually pretty good at guessing colors by shades (unless they’re weird shades of that color).

3) So, do you see all in black and white? Yes, probably, but I don’t think in terms of color (hey! Look at that grey car, and those grey flowers, and that grey cat… ). I always tell people about the time I was watching Schindler’s List with my mom. She said, “It’s so interesting that the whole movie is in black and white except that girl’s coat.” I responded, “It’s in black and white!?” So I imagine if you suddenly saw what I see, it would be about like that.

4) How did your parents figure out you were colorblind? Well, when you’re a small child, you’re expected to learn colors. Obviously, I was a little behind on that learning curve. But I have a brother just over one year younger than me, so his quick color mastery pushed me to learn. And by learn I mean memorize… everything. I had no idea what was meant by these color names. I just knew I had to remember them for every item in my small world. And I did pretty well. In fact, I fooled my mother (unintentionally, of course, although she was confused why I wouldn’t even look at the objects sometimes). She didn’t realize what was really going on until we visited a family friend’s house, and their kids had one of the same children’s books we owned but in different colors (who does that?). I confidently told her all the wrong colors from memory. So they took me in to test my color vision (they had already learned that I was visually impaired when I was six months old).

All of this does not mean that colors are meaningless to me. In fact, I enjoy them greatly in a poetic sense. I may understand more than average, and in my own way, how people attach different meanings to different types of colors. I actually frequently ask what colors things are just out of curiosity, and I love to hear how people describe colors. I also love to read, so some of the descriptive uses of color are beautiful to me, even if I’ve never seen them. And I’m always baffled and amused by two people with color vision arguing over what color something is.

This part of achromatopsia is the cause of most of the jokes with family and friends when they forget. Everyone forgets that I can’t see color. Sometimes it makes them laugh, if we’re close enough for them to know that something so slight wouldn’t offend me. Sometimes it makes them feel bad, which it shouldn’t. I used to tell people not to worry, since even my mom forgets. Then one day I forgot! I was hanging out with some friends and got up to get a popsicle. On the way, one of my friends called after me, “Hey, will you get me a blue one?” I got to the freezer and looked in, thinking let’s see.. blue, blue… wait a minute! Yeah, we got a pretty good laugh out of that one. : )

Here’s some other fun stories and quotes (some color-vision related, and some not):

Me – “Where’d you get that ice cream?”

Friend – “What ice cream?”

Me – “THAT ice cream.”

Friend – “That’s rice.” And of course we both laughed. : ) (In my defense, it was sticky white rice still in it’s scooped out form.)

Speaking of ice cream, my family likes to remember the time I happily covered my ice cream and cake in ice cream chocolate syrup. It was a light colored cake, so I thought it was all ice cream.

Then there was the time I mistook whipped butter at a buffet for some other substance you would eat in larger quantities (whipped cream for something or some sort of mousse maybe?)

Then there was the time I brought back a box of dog biscuits for us to eat instead of crackers (I’m not sure why they would be in the same location).

[Wow, I guess a lot of these are food related.]

 “You’re blind. You should be able to see better than me!” – my sister. She was actually joking about my supposed ability to see better in the dark, and ended up saying something ridiculously illogical. I don’t think it’s actually true that I see better in the dark, but friends and family have lots of good-natured jokes about me being a bat or some other darkness-loving creature.

“I’m such a musical liar!” I said this when helping a friend practice for an audition. I was trying to play the piano accompaniament, but couldn’t see the music. I pretended to be reading it (without realizing that’s what I was doing) until I reached the end of my memorization and stopped.

One year at our family’s 4^th of July celebration, my sister and I played a little joke on the rest of them when we enjoyed our annual home fireworks. We have lots of little children in my extended family (on my mom’s side), so I was able to subtly slip in my own exclamations. My sister sat next to me, feeding me the correct colors, and I would exclaim: “Oooo, nice red one. Oh, I like the blue….” Then when they caught on and figured out what we were up to, I started saying the wrong colors to make it look like it her fault. : D You probably had to be there to get the full effect, but the idea is that there’s nothing wrong with having a little fun with the limitations life throws our way.

In fact, I think that’s the wider lesson I could offer from this post. It’s a common mistake to believe that taking everything with deadly seriousness is respect. In fact, the people who have the most solid understanding of the common suffering of humanity are most able to properly make light of their own difficulties. Sure it’s possible to use humor as a means to draw attention to ourselves or to deflect pain, but it’s also a way to remind ourselves that ours is not the worst suffering and to enhance the lives of those around us with a hearty enjoyment of life. A good balance of deep reflection and light enjoyment of life's ironies seems like the right way to me.

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.

One Glimpse at a Time

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)