Awareness: So Much More than Cures and Funds

It’s been a while again. This time I have to blame grad school. But I graduated with my MA in history! Proof that limitations don’t have to stop you. I’ll get back to that in a minute. 

One of the biggest new changes since getting the contacts has been joining a Facebook community of people with achromatopsia (and family members of people with Achromatopsia). I’ve found some surprising things from these new connections.

Of course, one of the most enjoyable parts about it is talking with people who understand something about me that most people don’t. I think that’s a pretty normal human experience, varied by all the reasons we can feel different from people around us.

But I was surprised how different we are from each other. Maybe that sounds silly. Of course we would have different ways of dealing with achromatopsia, and even slightly different physical manifestations of achromatopsia. But before this I was the only one I knew who had it. I remember that when I met with administrators helping me through elementary school, they always reminded me that I knew better than anyone what my vision is like. I was the sole expert in my area. Finding out that others like me sometimes saw things (literally) quite differently from the way I do was strange, but probably a good reminder about relating to people in general.

I realized something more important than this, though. I mentioned in an earlier post that this kind of half-hidden condition (or maybe any for that matter) forces you to just see through it, to accept it as the frame of reference for your life. What else can you do? Perhaps because of this, combined with the fact that, until recently, a “cure” was completely out of the question, I never gave much attention to causes of “awareness.” Maybe that sounds heartless. Maybe it was. I don’t know.

Anyway, I had an experience that changed my mind. One day this spring, I was visiting with my mother, and I thought about the fact that Easter was approaching. Easter egg hunts have by no means been the most important part of the holiday for my family (I mean, Jesus is kind of more important than painted eggs or plastic ones with candy inside), but we frequently did them. And I remembered my first egg hunt as a very small child. It was a community egg hunt, divided by age groups, no parents allowed. Since my brother and I were about a year apart in age, we went together. He was given strict instructions to help me, which everyone assumed would be ok, since the eggs were just lying in the grass. But I had no protection from the sun, an achromat’s worst enemy. I couldn’t see the eggs in the blaze of light around me, even when my frustrated brother pointed them out. All the other kids raced around grabbing eggs, and we got only a few. Many tears were shed that day, and the whole family went home upset.

Now, don’t worry. As terrible as this probably was to my 3 or 4 year old self, I’m not relaying it as an open wound. I wish that had been the worst I ever experienced! But when I mentioned it to my mother, you could tell she still regretted it. I doubt she’s torn up about that specific event, but I think it would have helped if she could have understood better what she was dealing with, what I was dealing with. In my small-child understanding, I couldn’t comprehend it fully, let alone communicate it to others. Plus I had nothing to compare it to. This was the world as I had always known it.

More importantly, we didn’t know what this was. None of us had heard of achromatopsia. We had certainly never met anyone who had it or understood it. We were on our own. I was on my own. I had to be not just sole expert but sole interpreter between the sighted world around me and my own vision. It took me my whole childhood and beyond to come up with a pretty good explanation for others, and, even then, I’ve recently realized how much I had not given myself leeway for finding my way in a world not built for me.

I posted this story on the achromatopsia Facebook page, and got a variety of responses. But the ones that struck me were those who knew from very early childhood that they had achromatopsia and avoided events like this. Many of the people on the page are parents seeking advice for helping their kids with achromatopsia. How I wish my mother had had that help! Not just for my sake, but for hers! What a difference it would have made to have someone who knew what it was like and who could offer advice and directions for how to navigate the world with achromatopsia.

But simply promoting “awareness” is too generic. Sure, raising money for cures can be a really good cause, but real awareness is much more. I wouldn’t expect anyone to actually be aware of all the illnesses, conditions, and genetic disorders out there. Good grief, that’d take a lifetime! And possibly some medical degrees.

What I would encourage people to do is to try to understand the people around you. I think one of the things that I find most discouraging about people not understanding is when they’re afraid to ask. Yes, there’s a time and place for everything. I’m not too fond of the strangers who ask insensitive questions when I’m at work in my summer job. But if you’re someone who knows me, and you show that you really just want to know more, I’m happy to share! I realize not everyone may have my attitude about it. That’s the tricky thing about getting to know people: you have to try to discern who that person actually is. But I think that in most cases, if you try to avoid assumptions and make them feel free to talk about what it’s like for them, you may be surprised. And you may find ways to help make life easier. Of course, the best way to do this is to be a friend first. A little understanding and observation can go a long way to forming a genuine offer of help that will be acceptable.

I can’t say that there’s a strong chance you’ll know another person with achromatopsia. I can’t even say I’d recommend trying to suggest diagnoses to people you meet. But there’s always the possibility that you could help or encourage someone to find a network of people who understand. Or you could come to understand. You don’t have to have a genetic condition to know why that’s so important.

I said I’d get back to completing my MA. One of the things I learned is that even I am still learning where my limitations truly are (isn’t that another normal human experience?). I’ve always tried to be realistic about the fact that some things are beyond my reach. But I also realized after meeting with a staff member with the office for students with disabilities at my college that I had thought of myself as more limited than I am. He has his own physical limitations, but I learned from our conversation that I probably don’t struggle quite as much as I had thought with completing reading assignments.  This is important, since the majority of my professional life will be reading and writing!

Here’s where you’d normally see some platitude about how you can’t know if you’ll succeed unless you try, or to accomplish big things you have to do hard things. These are true, and I whole-heartedly agree. But it would be dishonest of me not to say that the biggest thing that has helped me and driven me is prayer and my relationship to God. With Him, I am not afraid to try, and I am not afraid to fail. Ok, maybe I am kind of afraid to fail. But I know that who I am is connected to something, Someone, far more important than any degree or career. And I know that wisdom and strength are ultimately from Him. My biggest accomplishment, His biggest accomplishment in my life, has been the gradual increase of difficult tasks (whether they be academic or learning to live more independently as a visually impaired person) in order to increase my trust in Him, the thing I was really cut out to do.

New Sight!

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/red-contact-lenses/

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.