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

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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.

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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.

Difficulties with Nystagmus

I hope everyone had a great Labor Day weekend! I worked on Sunday :/

I’ve started interacting on the forum over at www.nystagmus.co.uk (check it out, it’s an awesome place with awesome people). Someone commented that my blog comes across as entirely positive, to which my reaction is…

GREAT!!  🙂  🙂 

I’m so glad because I think that too often a diagnosis of nystagmus comes along with a feeling of impending doom. Which is too bad because seriously, nystagmus takes up maybe 1% of my life, if that (although, with the blog I think about it a lot more now, but I digress…)

So yes, I’m very glad that it is coming across as positive. At the same time, I do want this blog to be realistic. Nystagmus does come with some difficulties. Low vision is frustrating. It is something that has to be accommodated. So here is my list of frustrating things about Nystagmus:

1. I can’t read menus.
Not the kind you put in front of you, but the kind that appear behind counters at sandwich shops and McDonalds. Usually I’ll ask whomever I am with to read it for me. If I’m by myself, then I just stand awkwardly close to the counter. So annoying…

2. Driving
As much as I hate to admit it, driving is an issue. I wax poetic about this topic much more in another post, but let’s just say, nystagmus does affect driving.

3. Sometimes it’s hard to look people in the eyes.
I can tell when people notice my eyes, and my first reaction is to not make them uncomfortable. This means avoiding eye contact. Eye contact is a very important social behavior that you probably don’t think about too much. By avoiding eye contact, people can get the idea that you aren’t confident, or even that you might be evasive or not trust worthy. That’s where we get the meaning behind my beloved phrase “shifty eyes” (though I’m determined to take that one back ♥ )

SO, people with nystagmus are often stuck with the dilemma of interrupting the pattern of a regular conversation by the other person being distracted by the nystagmus, or avoid direct eye contact and risk offending the other person. Can’t win…

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There are other difficulties that come up from time to time, but these are the main things I struggle with.

But can I just say, these are mostly mild irritations. I know I sound like a broken record, but my life is seriously really really normal and great 🙂 Back to being entirely positive!

xoxo

Jo

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