Helloooo out there! I’m Jo, the founder and sole blogger (so far) for the Shifty Eyes blog.
A bit about me:
You can always check out my About page, but for those who don’t feel like clicking the link, I’ll just tell you again. I’m a young person who is trying to navigate through newly acquired adulthood. By trade I’m a corporate paralegal, by night I’m a superhero. I also happen to live with a condition called Nystagmus.
Ok, I’m not really a superhero.
A bit about Nystagmus:
The most basic definition is “involuntary eye movement.” There are many different forms of Nystagmus, of which I will not go into great detail here. Mine is called “Congenital Nystagmus” which is a fancy term that means I’ve had it since I was born or shortly after. My particular eye movements are pendular; they move in a smooth horizontal motion, very quickly back and forth. The condition is permanent. There is currently no cure or even effective treatment. It’s difficult to explain Nystagmus and what it’s like to live with it in a paragraph, which is why I have dedicated a whole blog to this particular aspect of my life.
Why a blog?
Turns out, there’s not a lot of shifty-eyed love out there. Only in the past 15 or so years have there been any organized support or information out there for people living with Nystagmus and their loved ones. While these organizations are great when it comes to learning about the physical condition, there is not a lot out there that explains what it’s like to live day to day. Most shifty-eyed people live their entire lives without meeting anyone else who knows what it’s like.
This blog is for all of those people who have Nystagmus but who don’t know anyone else going through the same experiences. It’s also for parents of children with Nystagmus who want to know what it’s like to grow up with the condition. And for everyone else out there, who knows? You may know and love someone with shifty eyes, or you may in the future. I’ll probably also insert my opinions about life and the world in general here and there, because hey, it’s my blog.
I know I haven’t posted on this blog in a long time, but I wanted you all to be the first to know.
I am 28 years old now. This has been 12 years in the making. There were no tricks, no hoops to jump through. I had to pass the eye exam to get my permit, which I did (with glasses). I then had to pass the driving test, which for me was the hardest part. I don’t know if it was just the importance I had put on this particular milestone, general fear of actually operating a vehicle, or some sort of test-taking anxiety, but when it came to taking the actual behind-the-wheel test, I completely lost my cool. Which is very unlike me in other aspects of my life. It was an issue.
But after several failed attempts (I honestly don’t know how many over the years; I lost count), today I passed. Not perfectly, but I passed.
So to my shifty-eyed friends out there who were told you would never be able to drive, don’t let that stop you from trying. And failing. And trying again. Because I swear to god I thought I would never be able to do it, and I DID.
Well this live blogging thing is going to be hard. There is so much that I still have to process.
1. It’s freakin emotional to hear even INTEREST about this condition from a doctor. I have always wanted to learn more from my optometrist about the medical background but thought that maybe they just weren’t interested it taking the time to tell me. But really, it looks like most doctors are just really ignorant about it.
2. The little medical knowledge I have of my particular nystagmus is probably wrong. Or at least it was just a best guess by me based on things I had read. And given all of the misinformation there is out there, this is probably not accurate. I am making a mental note to revise the little medical information I have on this blog.
3. I learned a lot more about treatment. Treatment is something that I’ve had mixed feelings about. This was definitely educational, and I will go into more detail about what I learned in a later post.
I think what I really took from listening to Dr. Hertle is that I want to get tested by a specialist. Not necessarily because I feel that I need a specific treatment, but at least so that I can learn enough to make an educated decision about whether or not I want to receive any sort of treatment. If nothing else, it’s comforting just to be able to fully understand what is happening with my own body, something that I think a lot of optometrists/ophthalmologist don’t really understand.
I’m eating breakfast in the large group room waiting for the program to start. Dr. Richard Hertle is the keynote speaker at the conference. It seems he is the foremost expert when it comes to nystagmus nowadays.
When I was growing up, Doctors pretty much summed my nystagmus like this: It’s nystagmus, it’s not curable, it probably wont get worse, and it might get better. There’s not much you can do about it.” The end. It seems this has been the experience of a lot of people. I never really had a great medical understanding of what is going on with my eyes, so I’m really interested in what he has to say. Stay tuned…
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!
Exactly two years ago today I started the Shifty Eyes Blog!
Wow, what a couple of years it has been. I started this blog because i really felt like there wasn’t a lot of information about how people lived with Nystagmus available on the internet. Now there are so many blogs, I can’t keep up with them all! And I couldn’t be happier. I think connecting with other people is one of the best ways to deal with this condition, for both those who live with it and for their loved ones.
I’ve said this before, but Nystagmus really doesn’t take up that much time in my life. I’ve talked about Nystagmus more in the past two years than I have for my entire life preceding this blog. I swear, my dog’s allergies affect him more than my Nystagmus affects me. There are a lot of things I could say today, but I think what I really want to say is, turn off the computer and go live life.
We all run in to obstacles. They don’t define who we are. One of my obstacles happens to be Nystagmus, but for all I love my blog, I am not “woman-with-Nystagmus”. I’m Jo. I have a husband and a very naughty dog. I read too much, and worry about whether I should change my cell phone plan or if I remembered to make my student loan payment. I watch ridiculous reality TV shows and write a little on the side. I have poker night with my buddies and play video games with my nephew. I’m happy.
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!
It’s been a while since I’ve had the chance to post. Big news…. I got married! Yay!❤
As you can imagine, the past few months have been pretty insane. Not only was I planning a fairly large event, I also had to find an apartment, move, and attended wedding-related activities like showers and bachelorette parties. And work to pay for the whole shindig. Yikes.
So now that I’ve had a chance to settle in a little bit, I wanted to catch up with you guys. I’ve missed you! Thanks for all the love and support while I have been out and living my amazing life🙂 Here’s some new things happening in my nystagmus world:
1) I can now post from my phone
This is excellent news because it means I can post even when my life is crazy and I’m never home (which is a lot right now). I can also post pics and videos a lot easier which is pretty cool.
2) I am going to the American Nystagmus Network’s conference in Washington DC
And you should too! It’s from July 22 -24. They only hold them once every two years, so don’t miss your chance. When I first learned 2 years ago that there was a conference completely dedicated to Nystagmus, I had just missed it and was so disappointed. This will be my first, and I’m very excited. This may or may not seem strange, but I have never in my life come into direct contact with someone else who has nystagmus. I have heard that it can be an emotional experience. I can’t wait. And I’d love to meet my shifty-eyed friends out there, so you should all check it out and try to make it. I will be posting more on this event later, so stay tuned!