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Deeper into the Grey: The 2011 Achromatopsia Convention

For those who've just come across our blog, or who might be unfamiliar with Achromatopsia (Meisha's eye condition), the quick rundown:

In the retina, our eyes have rods and cones. In short, cones process light, color and are responsible for much of our visual acuity. Rods are primarily for night vision. Meisha's rods are either missing or non-functioning which means: she is completely colorblind (she sees only in greyscale), extremely light sensitive (she must wear sunglasses at all times in the daylight or brightly lit rooms/buildings) and is legally blind (her vision is 20/200- 10% of that of a fully-sighted person and non-correctable). For a bit more info, definitely check out Achromatopsia.info.
 
Every other year, people with Achromatopsia and their friends/family get together for a convention. It's an opportunity for everyone to connect, share stories and learn about the advances in adaptive technologies and scientific research regarding this rare condition. It's also much, much more than that. Because we both have differing perspectives of our experience at the Achromatopsia Convention, we decided to share both of our stories in one post.

 

Meisha's Perspective

When thinking back about the Achromatopsia Convention, I feel a great sadness and disbelief over how quickly the time passes. It feels as it did the year before... bonds and a greater feeling of belonging formed, which inevitably ended with a solemn day of goodbyes.

As I had attended the previous convention, my instinct was to compare the two. One great change was the meet and greet the night before the convention.  Meeting in the hotel lounge was a wonderful icebreaker.  As everyone filed into the lounge, the energy exploded into non-stop conversations that traveled around the room.  Introductions and random discussions of how we arrived to the convention were followed by the curious questions of what others’ eye sight is like.  We had the time to let the excitement of being around others with Achromatopsia settle in without the requirement of sitting still in a seat and paying our respect to the speakers by listening.  This was only the start of comparing the vast differences we have from each other even though we share a uniquely uncommon condition.

A group of 8 of us broke away and headed to Little Italy nearby for more drinks and food.  The first sit down meal with other Achromats always brings up smiles.  Here we were in a fancy restaurant with all our noses in the menus.  What a sight we must have been with six out of the eight squinting to read the finely handwritten menu.  Dinner proceeded and as the food settled, so did the exhaustion for those who arrived in Chicago only hours before the meet and greet. 

Josh and I (mainly I), being abnormally late night-owls, were excited to find a few comrades to wander the city of Chicago until the wee hours of the morning before retiring to our oven (van). I found myself learning and benefiting more out of the time simply hanging out with Achromatopes than during my normal bedtime hours, which happened to be those of the convention. I couldn’t help my attention from escaping due to exhaustion, which unfortunately caused little retention of the valuable info given.

After the massive amount of focused conversations given to Achromatopsia, I have accepted one thing: Even those ostracized and outcasted, place judgments and ranks amongst themselves. We, as humans, must feel a sense of belonging but still desire to stand uniquely in it. We will either want to be the luckiest out of the group or one that suffers the most, but we will need others to confirm the reality we chose. At times I felt as though I was placed under a magnifier and examined as though I was a foreign object. I was to stand and prove my symptoms of Achromatopsia as though I was on trial for surviving in a world of normalcy. My ability to squint infrequently became commonly noticed. The way I could get around and manage without dark glasses at all times and appear to be completely normal baffled some. When asked, my response was vague, only because I didn’t understand myself. I believe I adapted to my world with what I had and the ease of old repetition may be perceived as comfort and normalcy. I was also asked to give pointers about how to successfully get through school. As I always do, I froze and gave my answers in a merely-heard voice. I believe parents wouldn’t want their children to be like me, as I struggled through school. Even though this wouldn’t have been different without Achromatopsia, the condition is blamed rather than straightly paved school system. I just flat-out didn’t fit into its course, a problem many other “normal” kids battled as well.

Although at times I felt confined and judged, I would say that it only took up a minor part in the convention experience, but needed to be brought out. I found myself staring into a newly uncovered mirror. It was unusual to break down the barrier of my misunderstood quirks. Wondering what others thought of my Achromatopsia-induced habits in a social situation melted away. I felt as though I could just be me, whether people liked it or not. I didn’t have to explain a part of myself that intrigues everyone. It was just a known phenomenon and we could share battle stories of which only we can relate.

I only wish it could last much long and that my inability to stay connected afterwards wouldn’t present itself shortly after. I hold a very special place in my heart for time the I spent with such amazing and inspiring people and will always look forward to the next chance I get to be among other Achromatopsia gene carriers.
 

Josh's Perspective

 
Before I begin, I must say that I had actually written this post a couple months ago. That post was somehow lost and I really haven't been able to muster the words in a fashion that would do justice to my experience at the Achromatopsia Convention. Apparently that post was somehow meant to be lost as this one will be drastically different. With that...

I've been with Meisha 9 and a half years. She's a deeply amazing person who, after all this time, I still cannot understand. Her world is very different from my own. By day, she moves through this world behind dark sunglasses as the sun bleaches her greyscale world. By night, the glasses come off, her eyes come alive and her energy level rises. For over 9 years, I've tried incredibly hard to envision what her world must look and feel like. The Achromatopsia Convention has helped me to understand just a bit more about her juxtaposed world and feel a bit more of what it must be like to have Achromatopsia.

Meisha doesn't want to be cured. I was entirely confused when she first came to this conclusion. Why? Why wouldn't she want to have color in her world? Why wouldn't she want to drive? Why wouldn't she want the migraines from the sun's blinding light to go away? Her answer was eloquent and simple: She'd accepted herself for who she was inside and out, and nobody was about to tell her what "normal" vision is anyway. For who are they to really know or decide? I love that the convention reveals the evidence of her self acceptance. Much of the content and presentations during the convention are centered around the science of the condition and the ongoing quest for a cure. Meisha will be the first to remind others that going through life waiting for a cure to make it better is no way to live at all. Although the scientific content of the convention was truly fascinating and informative, the most important aspects of the convention for both of us were not science related at all...

The lifelong friendships and bonds we formed during the Achromatopsia Convention are absolutely priceless. We met so many amazing and inspiring people and wouldn't trade our time spent with them for anything in the world. People like Jolie, who despite dealing with a very difficult childhood because of Achromatopsia, turned out to be an incredibly loving and accepting individual as well as one of our dearest friends (I'm actually writing this post from her living room). Nina, a young girl who traveled by herself all the way from Slovenia. Jon, a kindred spirit who loves the types of things we do- rock climbing, mountaineering, camping, skydiving, craft beers and staying up till the wee hours of the morning. I think he may have also inspired Meisha to try nighttime scuba diving :) Edita, who uprooted herself from her family and comforts in Lithuania to come to America. And Carolyn, a mother from Michigan who, over just a few days, blossomed from quiet and reserved to happy, outgoing and a friend to all.

In the "normal" world, Achromatopsia tends to be a big social hurdle for us to get over and we both seem to get caught up in constantly explaining and reexplaining the condition to the curious folks we meet. It was so nice to be around others who already understand this unique facet of both our lives. In most cases the tables were actually flipped... I, being a "fully sighted person" found myself to be the minority in most cases during those 4 days. It was awesome to watch Meisha peel back her shell so quickly when amongst others who "get her". I loved listening everyone tell stories from their lives and laughing as most of them ended in a resounding "ME TOO!" from the group.

There were actually two presentations at the convention that we found to be extremely helpful: the Adaptive Technologies Presentation and the Achromatopsia Activities Presentaion/Discussion. Between talking/comparing with others and these presentations, Meisha learned that there are a few things that would definitely improve her quality of life and ability to do many new activities: darker custom sunglasses, tinted contacts and a monocular. The question now is how to pay for these things on a vagabond's budget... any donors or sponsors? *Wink wink*

The Activities Presentation was a compilation of the many sports, hobbies and activities that Achromats enjoy doing... a real eye opener and certainly a great inspiration. After the presentation, people were able to discuss these activities and give tips regarding how they were able to accomplish such things. Meisha is definitely one who often says "If he/she can do it, I sure as hell can!", so it was awesome to learn about all the cool things people are doing, despite the challenges their condition presents. Hopefully that means you might see Meisha doing a few more crazy things here on the blog 😉

All-in-all, we feel incredibly blessed to have been able to participate for a second time in the Achromatopsia Convention. It was ridiculously difficult to say goodbye to all the wonderful people we hung out with, as our friendships and camaraderie formed so quickly. We even went so far as to accompany Jon on his train ride to the airport just to make it last a little longer. As all good things must eventually (and perhaps temporarily) come to an end, all we can do now is look forward to the happy reunion at the next convention :)

Yes, of course we managed to snap a few pics (and borrowed a few from our friends on Facebook) while frolicking around Chicago with our Achromatic friends! Check 'em out:

 

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