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.