I added a Resources page up top. It’s got some great websites. Check it out!
I added a Resources page up top. It’s got some great websites. Check it out!
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:
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 🙂
*** (Hey all, there are updates to my driving journey here and here. It’s good news!) ***
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:
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?
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.
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.
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.
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.
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!
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.