Category Archives: Parents

Nystagmus and Driving – Part 2

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Today I got my drivers license. 

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.

xoxo

Jo

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A Great Nystagmus Blog

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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

A Love Letter to Parents of Children with Nystagmus

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I have had the opportunity to view a lot of blogs popping up about nystagmus (yay!), and I noticed that the majority seem to be by parents and not by people who actually have nystagmus.

At first I was rather surprised. And then I thought about it. For the most part, children don’t really notice the nystagmus. They don’t know the difference between what they see and what is “normal.” I myself did not even know what it looked like until I was a young adult. And when I did finally see it, it freaked me out! Even though I knew a decent amount about the condition and have lived with it forever, it was still unnerving.

And now I know why there are more blogs by parents than by my fellow shifty-eyed friends. It can be scary as hell to see the first time, and I can’t even imagine what it feels like to discover it in your newborn, especially when you have no idea what it is. And you know what? I officially give you permission to feel the following:

Scared

Because holy crap, their eyes are not supposed to move like that! In the beginning, parents can go into a headspin about all the different things they think it could signify: loss of sight, neurological disorders, etc. etc. This is a condition that is not widely known, nor is there a great effort to educate the public.

Mad

Because this is not what you signed up for. You signed up for a normal child, not one with a disability. Yes, this is a common emotion, and that is totally ok. Be mad! It sucks! but then I promise after a while, you will realize that your child is totally normal, and that this is not necessarily a “disability.” I encourage you to experience this emotion as a part of processing the diagnosis, but I also encourage you to after a while, be open to the fact that this may not be as big a deal as you think it will be.

Frustrated at the lack of information

And let me tell you, I am with you on this one. I think it’s especially hard on parents. You want to be as informed as possible so that you can help your child deal with it. And you know what? You and I together, along with all of our other shifty-eyed friends and parents, we can change the lack of information out there. Write your blogs, talk to the few people who are conducting research. And talk to people like me and to other parents who are going through the same thing. In this way, we can get our own “research.” We can learn from each other.

But I hope that after a while, you step back from all of the hard core scouring of the internet and enjoy time with your child. Because it will make you crazy. And because, look! Your baby is so freakin’ cute! It is WAY more fun to play with them than to be glued to the computer screen! And oftentimes, it is more beneficial to them in the long run. They know there is nothing “wrong” with them; they just want to spend time with Mom and Dad!

Frustrated at some doctor’s “bedside manner” or lack thereof

Man, I’ve heard some awful stories. My own pediatric ophthalmologist was a saint, and I associated going to the eye doctor with watching Yogi Bear cartoons and getting a toy afterwards if I did not cry (As a side note, bribing works. I’m still able to take eye drops without a problem). But not everyone is so lucky. Also, many eye doctors are dismissive. My secret belief is that it’s because they only know enough about the condition to diagnose it and rule out other more “serious” conditions. Which is frustrating.

Ashamed

This one is the extremely large and sensitive elephant in the room. Many, let me repeat that, MANY parents experience shame of their child. They feel ashamed when someone looks at them funny or makes a comment. They don’t want people to see their babies. They wish their children were like other children.

And this comes with a huge amount of guilt.

Parents, I want you to know that it is TOTALLY NORMAL to feel this way, and so, so common. And you know what? It will go away, I promise. Please do not beat yourself up over this. I have nystagmus, and I do not blame you at all. You are human beings. The only thing I ask is that if you do experience this, you never let on to your kids, even once the feeling goes away. If my parents felt ashamed, they never ever told me, even after I grew up. And I think that it’s because of this that I can look at it more objectively now. But please, find an outlet. Blog! Talk to others who have felt the same way! It’s amazing how a little understanding can help heal all wounds.

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So Parents, thus ends my love letter to you, and it is a love letter. You have a tough job, way tougher than us shifty-eyed people do. I so admire you and appreciate all that you go through for your children. Remember to relax and enjoy them.

I will end with a little note from me to you: It’s going to be ok 🙂

Personal Nystagmus Experience – Mike

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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

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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

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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.

Job – Yes, I have one!

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Whew, it’s been a while since I’ve posted! But don’t worry, I’m back. I’ve just been super busy at work….

…because yes, I work! I went to college and got all edumicatedand everything. As I’ve started to reach out to my shifty-eyed community, I’ve learned that one of parents’ biggest concerns is whether or not their child with nystagmus will be able to work in a normal environment. Which shocked me, because it was something I had never even thought about. Of course I would work, how else do you live?

So, as a person with low vision, what do I do?

I’m a book editor! Yep. I read and edit manuscripts and turn them into books. I also manage the production process, which means I work with the designers who make it pretty, work with the printers who will make lots of them, and various other small jobs that you never think about, but need to be done to turn a manuscript into a genuine, beautiful, readable book.

It’s important to remember that people with low vision (or no vision at all for that matter) certainly enjoy reading just like everybody else. I was an avid reader as a child. For a few years, my bedroom was in our family’s library. I slept surrounded by hundreds of books collected over many many years (some date back to the late 19th century). Literally, anytime I wanted I could reach out and pull a book off the shelves. I began Milton’s Paradise Lost this way when I was about 10.  I can still smell the pages; books are very comforting to me.

Now obviously, my nystagmus is not so bad that I cannot read regular print books. Many shifty-eyed people out there may need a little help. However, there are a great many resources for low vision readers, and millions of books are produced in Braille every year. if you have a child with nystagmus (or if you have nystagmus) encourage them to read! Reading is so important to the development of any child.

And though some careers will not be available to people with nystagmus (i.e. the military) most careers are wide open to those who have the dedication and confidence to pursue them.

To my shifty-eyed friends, what do you do for a living?

xoxo

Jo

Nystagmus and Driving

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This may be one of the most sensitive topics for people with nystagmus. As you can imagine, anything that affects your vision may affect your ability to operate a vehicle. Let’s talk about driving and nystagmus in general, and then I’ll tell you a little more about my experiences.

Can people with Nystagmus drive?

It depends on three things:

  1. How extreme the nystagmus is. It may be that a shifty eyed person needs to get a note from their optometrist/ophthalmologist saying that it is safe for them to drive.
  2. General vision. Many times nystagmus is accompanied by low vision. A person with nystagmus will need to take the same eye exam at the DMV as any other person would do. This test can be taken with glasses on, but that will mean that the driver would need to wear the glasses at all times while driving.
  3. Where the person lives. It’s my understanding that in the UK, the driving requirements are much stricter than they are here in the US, and it’s much more difficult for people with nystagmus to get a license there. Also, every state in the US has different driving requirements.

Do I Drive?

No, I do not. Can I drive? Technically, yes. In the past I have gotten my permit, and have driven a great deal. However, I have never gotten my license. Just because I can drive does not mean that I am comfortable driving. Because of the way my particular nystagmus reacts to movement, fast glances and checking blind spots are challenging. I’ve been in some close calls before. My worst nightmare is not seeing someone in time, making a movement, and then getting into a huge accident on a freeway that kills somebody.

So, for this reason (and others not having to do with nystagmus) I have chosen not to drive for the moment. This may change someday, especially if I have kids and need to drive them around. But even if I do get my license, I will probably keep driving at a minimum

Does not driving affect my life?

Yes, it does. This is probably the single greatest nystagmus-related challenge for my personal life. I live in Los Angeles, which is probably one of the biggest pro-driving societies in the world. Not driving can be seen as being irresponsible. It also means that the public transportation system is often times lacking. In order to have any kind of personal life, I depend on getting rides from other people. My friends have been great about this, but I know that sometimes it can be frustrating for other people. I try to pitch in for gas if I’m being toted around a lot.

I do have a fantastic boyfriend who is very understanding about my not driving. I won’t lie though; it has come up as an issue. I can imagine how frustrating it is when there is a family event at his house that he has to pick me up and drive me back for. It also affects how much he can drink when we go out, which isn’t fair to him. He is very kind about it, and has let me taken my time with the driving issue. He never complains to me, and for most of the time, it’s not a problem. But I can see that it’s frustrating sometimes. I struggle with a lot of guilt about this.

As far as work goes, luckily, I work just blocks away from my house, so I have avoided the challenge of getting to work for now. Whew!

So yes, driving is an issue all shifty-eyed people have to deal with. It’s a sensitive topic. No body likes to think they can’t do something simply because of the way they were born. We appreciate all the understanding and shifty-eyed love from all the “normal” sighted folks out there 🙂

xoxo

Jo

*** (Hey all, there are updates to my driving journey here and here. It’s good news!) ***

Does Nystagmus make my life suck?

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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?

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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!