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

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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