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.

3 Great Things About Nystagmus

Most of the time, I don’t even think about my nystagmus. Other times, it can be slightly difficult to live with. However, on occasion, there are some really awesome things about my nystagmus that I’ve come to love.

1. It’s a great conversation starter
At times I can be socially awkward (try not to be too shocked). However, there is always one thing I can talk about safely when I get to know someone. Some people ask, but others will notice without saying anything. Either way, it makes me confident to speak up because I know more than most people about that topic, and I’m always eager to make people feel at ease about it. I also like to make them laugh, leading into positive thing number two…

2. I have a cool parlor trick
Explaining my nystagmus to people can sometimes be very dry, and at times people don’t know quite how to react. They think maybe they should feel bad for me. To lighten the mood, I’ll say, “Wanna see something cool?” and then spin around in circles like a crazy woman. Which is funny enough on it’s own, believe me. I think if that were the end of my talent it would still be pretty hilarious. Or maybe I’m just easily amused.

But I digress. Once I stop spinning in circles, my eye movement increases so quickly and to such a degree that at that point, I really can’t focus on anything at all, I just see the world spinning in front of me. They go back and forth as far and as fast as they can go. I don’t really know why they do this; my spinning must aggravate it somehow. It’s pretty fascinating to see (or so I’m told) and people usually laugh out of amazement.

And all I have to do is spin around in a circle once more in the opposite direction to get my eyes back to normal. Like I’m unwinding 🙂

Now whether or not people actually think this is cool is irrelevant. When I do my little trick for them, they know that I am not ashamed of my shifty eyes, and that I take it so lightly that I can joke about it with anyone. I really think that’s what puts them at ease more than anything else.

3. It makes me different, in a good way
Not to get all after-school-special on everyone, but I really like that it makes me unique. It’s something you don’t see everyday. It can even be a beautiful thing, in an uncommon, off-centered kind of beauty, and isn’t that the best kind there is? Besides, don’t all girls want their eyes to be unforgettable? 🙂

There are more great things about my shifty eyes, but I think those are my favorites. To my fellow shifty-eyed friends, what do you like about your eye movement? Parents, what do you love about your children’s nystagmus? I assure you, it’s not all bad. Sometimes it can be wonderful.
Jo

Does Nystagmus make my life suck?

In a word, No!

Or rather, if my life sucks, it’s for entirely different reasons. Like, I overdrew on my bank account (again) or my dog ate my shoes/Starbucks cup/box of chocolates that I thought was high enough up on the table but it turns out he can jump up there.

Now of course, I can only vouch for my own life. I’ve only very recently started to look for and read about other people who have Nystagmus (mostly through the internet), and I was seriously shocked to read how some people have had a really hard time coming to terms with their condition. I’ve given some thought to this, and have three things to say:

  1. Everyone has different experiences in life whether they have Nystagmus or not. Some people’s childhoods are more traumatic than others. And I’m pretty sure Junior High sucks for everyone. It may be easy to blame Nystagmus for many of life’s socially difficult situations.
  2. I’m lucky to live in a place where bullying is frowned upon and accpeting different kinds of people is taught at a very early age (thank you southern california). This isn’t true for everyone. I imagine life experiences really depend on what environment you are in.
  3. My Nystagmus is not as severe as others may be. Something that I did not know growing up is that there are many different types of eyes movements, some of which may be more noticeable than mine. Also, my null point is not particularly awkward; I look just slightly to the side. For other people who have either more intense eye movement or a more difficult null point, Nystagmus becomes a more visible condition, something that people will notice right away.

It may seem by looking on the internet that more people have a hard time with it than those whom it affects peripherally. My hope is that the majority of people with Nystagmus actually live normal lives, and the reason you can’t find those experiences online is because they have less need of support groups than those for whom it really is a challenge every day.

Now back to my life. Why didn’t it suck?

My Family

Growing up, my Nystagmus was a non-issue. Looking back, I think my parents did a FANTASTIC job of not letting me feel like I was different than anyone else. We didn’t ignore it: certainly every time I went to the eye doctor it was something that was addressed (mostly just her saying “no changes” and reminding me to relax while I read the E chart). My mom would pester me about using my null point too much (because I would often favor one eye, which was bad for the eyesight in the other eye, not because she didn’t want me to use my null point) but other than that, there wasn’t much of a need to talk about it. Really, the astigmatism that often comes with Nystagmus was more of an issue because I had to wear glasses, but astigmatism is very common. Other kids in my class had glasses for the same reason.

My Friends

I don’t know if I just lucked out, but I have never not made a friend because of my shifty eyes. Certainly children are curious about things that are different, but because I never thought of it as a disease or something that made me a freak (thanks mom and dad), I just explained what it was when they asked, and that was about it. For the most part they thought it was pretty cool. Also, most of the time when people get to know me, they completely forget that I have it to the point where they don’t even see the movement.

Example: I went to elementary school with one girl for 9 years (k-8thgrade). She was a friend, and we grew up going to each other’s birthday parties. After grade school, we went to separate high schools, and I didn’t see her again for probably 5 or 6 years. Then, we ended up both working together at the same day-care center. It was great to see her again, and it’s always fun to work with people you know. We worked side by side all that summer. One day, one of our co-workers brought up my Nystagmus in a passing conversation. She then replied, “Oh yea, I totally forgot you had that!” Even after 5 years of not seeing me, and then working with me for a few months, she STILL didn’t notice my Nystagmus! And the movement never stops, so I know it’s not because my eyes didn’t move very much.

It’s a weird phenomenon, but it happens all the time. The people close to me totally forget that I even have it.

In reality, I myself hardly ever think about it. It’s just an accepted part of my life. My vision has always been the same, and I probably think about it as much as anyone thinks about their vision. My boyfriend has really sensitive eyes (they get very dry and red, especially when he is tired) though his vision is pretty much perfect. He thinks about his eyes more than I think about mine.

So yea. Life’s pretty normal for me.

xoxo

Jo

What is Nystagmus?

Nystagmus simply means involuntary eye movement. Here’s the almighty Wikipedia article that goes into more detail about the different kinds of nystagmus. I’ll try to summarize a little more succinctly here.

Just a note, as you can already probably tell by my reference to Wikipedia, I am in no way an expert, medical or other, on this topic. I am simply someone who lives with the condition and has done some research. If you or someone you know has nystagmus, you should see a medical professional for accurate information.

There are two kinds:

Acquired nystagmus is when you acquire the condition later in life

Congenital nystagmus is when you are born with the condition (or it’s diagnosed shortly after you were born). Most people who live with nystagmus (like me) have this kind.

What does it look like?
It can be pendular (smooth movement) or jerky, horizontal or vertical, and sometimes even circular.

My particular nystagmus is pendular horizontal, so that means it’s mostly a smooth movement from side to side, though it’s quite fast.

Is there a cure?
The short answer to this is no, there is no cure.

That being said, there are a lot of current studies and research about nystagmus, its causes, and possible treatments. People can have nystagmus for a variety of reasons (albinism, genetics, certain diseases) so treatments that may work for acquired nystagmus won’t necessarily work for congenital nystagmus.

Think of it this way: if someone has a cough, trying to get rid of it will depend on why they have a cough. If it’s a common cold, maybe they take cold medicine. However, if they have tuberculosis, cold medicine won’t make their cough go away.

Null Point
Most people with nystagmus have a null point, or a position in which they hold there gaze that reduces the movement. This position varies from person to person. Many times, rather than the eye movement itself, it’s an awkward null point that will cause a lot of difficulties in the classroom or social problems. Though there is no current cure for nystagmus, there is a surgery that can slightly adjust the null point to a more manageable position.

My null point is a gaze slightly to the right, which means many times in order to reduce my eye movement, I’ll turn my head slightly to the left to look at something in front of me. I’m lucky, because most people wouldn’t even know that I’m using a null point.

Other Resources
To learn more about nystagmus, there are a couple of great organizations:

The Nystagmus Network
A national, self help organization based in the UK established in 1984 to:
     Raise awareness of Nystagmus
     Provide information and support to people with nystagmus
     Promote research into nystagmus

The American Nystagmus Network
A nonprofit organization founded in 1999 to serve the needs and interests of those affected by nystagmus. It is an outgrowth of the Nystagmus E-Mail List introduced on the Internet two years earlier to provide information on a wide variety of topics pertaining to nystagmus.

Both of these organizations have great websites where you can learn a lot more about nystagmus and find specific support. There are a lot of other good resources too, but these will get you started. I’ll try to post a more extensive list later.

Well, that pretty much gives you a broad idea of what nystagmus is. If you have any questions, always feel free to ask!

Welcome to the Shifty Eyes blog!

Featured

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.

xoxo

Jo