ANN Conference 2011 – Kick Off

Wow!

The ANN Conference started this afternoon. Today was mostly checking in and meeting everyone; the official workshops etc start tomorrow. But I gotta tell you, it’s been really amazing so far.

I started at a round table for adults with nystagmus. And can I just say, I have never felt more comfortable with a group of perfect strangers in my entire life. There is just an instant connection; an understanding. It’s not that I feel particularly self-conscious when I meet people without nystagmus, it’s just always there in the back of your mind. You get used to expecting that look of recognition when people realize that your eyes move unexpectedly. Here, I feel an incredible freedom to look around anywhere I want and not have to potentially have that moment with someone . I don’t know, it’s hard to explain.

And that’s just it: I don’t have to explain. Everyone just… knows.

I can’t wait to get started tomorrow. I’ll be blogging straight from the conference, so there will probably be a few posts throughout the day. I will not be blogging during the Youth Panel because I’ll be leading discussion 🙂 but I will post something about it later in the evening.

I’ll also try to pick up a few more personal nystagmus stories from individuals. Maybe I can even recruit a guest blogger for down the road. If you are at the conference, hit me up people!

Talk to you soon!

Jo

ANN Conference

Hey everyone!

I’m getting really pumped about the American Nystagmus Conference in Washington D.C. I can ‘t believe it’s only a couple of weeks away. Time has gone by so quickly!

There are two reasons why I am especially excited…

I officially have ANN permission to blog live while I’m at the conference. This means I can post pictures, videos, and talk about what’s going on at the conference while it is all happening. I hope that all of you will one day be able to attend an ANN conference, but for those of you who can’t make it this year, do not fear! I’ll try to document as much as I can so you can at least experience a little bit of it. I only wish I could attend all of the panels and discussions they have set up. It all looks pretty amazing…

The other reason I am very excited is that I will be participating at the conference! I have been asked to moderate a panel  of young people who have successfully navigated their way through life with Nystagmus. Sound familiar? Those are my kind of people! It’s a big honor to be asked to lead this discussion, and I am really excited to sit down with everyone and open a window into what it is like for a young person with Nystagmus. I think a lot of parents with young children who have Nystagmus will find this panel particularly informative. One of my goals at the panel (and with this blog) is to hopefully alleviate some of the fears that parents have when their child is diagnosed.

I think one of the biggest things I’m looking forward to at the conference is just to meet other people with nystagmus face to face. I have made a lot of shifty-eyed friends over the internet who I wouldn’t trade for the world, but I have yet come in to physical contact with someone who has the same condition as me. It’s funny, in some ways the role will be reversed for me. I’m so used to seeing other people react to my Nystagmus that I’ve never really given any thought to what my reaction would be. I have heard that it can be pretty emotional. I guess we’ll see 🙂

To all my shifty-eyed friends, let me know if you are coming to the conference! Can’t wait to meet you! And if you won’t be able to make it this year, let me know what parts you would be interested in. I’ll have to be your eyes this time. Ha, that will be a first!

Jo

 

A Great Nystagmus Blog

Hey guys!

Life is crazy right now, my wedding is coming up (yikes!) so I’ve been VERY busy with last minute details. Work also always keeps me jumping. But I wanted to make sure I give you all a heads up: one of my fav blogs out there has recently been re-launched!

If you have been following The Shifty Eyes Blog, chances are you have already checked out this amazing nystagmus website  by a fellow shifty-eyed friend named James . He founded http://www.nystagmus.co.uk/ long ago, way before this little creation began. What’s great about his blog is that it’s not just his own musings and experiences (although that’s in there as well, and always interesting). This website hosts a forum for anyone who wants to talk about nystagmus, including people who live with it, their families, and even researchers who are involved in nystagmus studies.

It’s quite a community. While I love my blog and all of my shifty-eyed friends that follow me, sometimes you just need the support and ability to talk to multiple people who are experiencing the same things as you. The forum provides an excellent way to do this.

And after a brief down-period between Christmas and New Years, it’s back up with new content and all shiny and new looking! I encourage you all to go take a look and talk to people (if you haven’t already). I know we have a lot of new nystagmus-parents out there; here’s another great place for you to get some information and feedback.

Say hi to James for me!

-Jo

Personal Nystagmus Experience – Mike

You guys have to read this, it’s pretty awesome.

Our friend Mike introduced himself in one of the comments on here, and told me he was writing about his personal experience with nystagmus, which I think is great. The more we share, the more we can help each other.

So he wrote this great post called “Nystagmus? Oh, you mean like astigmatism!” on his blog. Here’s his description:

*     *     *

This article is no more than my personal version of a story you can find elsewhere on t’internet from others in the same, and often a far worse, position than I. It is a work in constant progress. At my last look I think it had undergone around twenty five significant revisions. You can surmise from this that perfection is some way away!

The “Shifty Eyes” blog is a good place to start if you want accuracy and brevity with a positive and informative slant.

Editorial thoughts

What follows is extremely detailed as I have tried to do a number of things I haven’t seen elsewhere.

Firstly, I have covered my entire life from diagnosis upon starting school to date. That’s (ahem) four decades. I could have skimped but the act of writing itself triggers memories and new insights and I want this to be my one and only definitive statement.

Secondly, I made a conscious decision to put in as much detail as possible. Basic descriptions of nystagmus are easy to find. Detailed descriptions of the effects are less so. The effects vary between individuals so there never will be a party line but many people pass through life with no diagnosis, or a diagnosis but no insight into the impact, so I wanted to highlight those things I attributed to other things like short-sight but which should rightfully be attributed to nystagmus.

Thirdly, I wanted to try and capture how the many tiny aspects of it can vary over time. What seems major as a child is inconsequential now but vice verse.

Fourthly, I made a conscious decision to make this a work in progress. However, the idea was to get it out there and tidy it up later. It may well turn out to be akin to painting the Forth bridge.

Finally, I have yet to enable “Comments” for this post. I wanted to see where my thoughts took me. Once I am satisfied I have something near finished and I have linked appropriately elsewhere then I will welcome comment.

*     *     *

I’ve been reading over his post again, and realized I had forgotten how honest, forthright, and hilarious it is. This is probably my favorite personal account of life with nystagmus that I’ve seen yet. And that’s not just because he gives this little blog a shout out (Woohoo!).

No, I like his post because it’s very unaffected. As for myself, I unfortunately have a bad habit of squishing a moral in with almost every story. Sometimes I feel so protective of my fellow shifty-eyed friends that I forget to just tell my side of things the way it is without trying to teach anyone some sort of lesson. Mike has the gift of letting his true personality just exist while contemplating on his life experiences with nystagmus. Sometimes that’s the best way to try to explain to others what it’s like.

It’s a long account, and at times hilariously tangential, but completely worth the read. So to my shifty-eyed friends and family alike, I encourage you to go and read his excellent  post.

 xoxo

Jo

New Nystagmus Blog for Parents

There’s been some great responses to this blog out there, but I think this has to be my favorite. A parent was inspired to start their own nystagmus blog from a caregiver’s perspective. It’s called simply, Nystagmus Blog.

How awesome is that?!

I get a lot of feedback and questions from parents, and I know there is a lot of fear out there. Honestly, I think a nystagmus diagnosis is more traumatic for the parents than it is for the child. From a child’s perspective, they won’t really know what it’s like not to have nystagmus, so they are surprisingly resilient. For parents, on the other hand, it’s difficult because they can never truly understand what their child is going through. It can be a frustrating journey.

I encourage all the parents out there to check out this blog. It’s always good to have a community of people who know what you are going through. It’s also got some great advice and general info for parents.

Best of luck!

xoxo

Jo

Nystagmus Q&A

We need a good place  for questions and answers here at the Shifty Eyes blog.

I know a lot of people reading this blog are parents and loved ones of people with nystagmus. Sometimes it can be hardest on those who do not have shifty eyes. It’s very difficult to understand what it is like, especially for those with smaller children. I mean, I have a hard enough time articulating my experiences with nystagmus. It can be almost impossible for children who may not even realize that they have it.

So, if anyone has any questions for me on what it’s like to live with shifty eyes, please feel free to comment me here.

xoxo

Jo

P.S. My expertise lies in day to day living and social situations. And by “expertise” I mean I live from day to day and encounter social situations :p I’m not a doctor, so I’ll do the best I can with medical questions, but you should always always refer to a specialist. If I can’t answer, I’ll certainly try to help you locate the information you need.