Nystagmus and Driving – Part 2

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

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

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

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:

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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.

Job – Yes, I have one!

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