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:

*     *     *

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

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5 thoughts on “Personal Nystagmus Experience – Mike

  1. Aw shucks 🙂 It’s been a long time since the words “pretty awesome” and me have appeared in the same sentence!!!

    Thank you for your kind words. I must admit I printed my article off and now find that I must do some trimming of repetition (at the very least) but haven’t had the time recently. I also want to add in some of the many links I have found through your good self and others. Re-reading it made me think the humour was a bit forced but “hilarious” will do for me so what do I know!

    I suspect “hilariously tangential” possibly understates it too with the wisdom of hindsight (or more appropriately perhaps a sideways glance!). Just admit it. You started to read it in September and it’s taken you now to finish it! Potential readers should be warned they may lose the will to live!

    I am highly peturbed you think that was my “true personality”. You may have just triggered a crisis 🙂

    I have written lots of draft stuff for my site but not published since October as I’m not sure what I have to say or where my site is going. I am having a rethink on this. I have a few ideas but it’ll be 2010 before they come to fruition.

    Anyway, thanks again. I hope others find it useful.

    Mike

    PS: Happy Christmas.

  2. Haha, oh Mike, I suspect more of you comes out in that article than you are willing to admit. Isn’t that the funny thing about writing? We reveal parts of ourselves, often-times unwittingly. But it’s true, I don’t really know you, so maybe this is “clever writer Mike.” I’ll tell you though that I think part of the reason I posted this is also because I enjoy your writing style.

    And don’t trim it down too much!

    The truth is, it’s very hard to honestly talk about our experiences with nystagmus in a short article. It’s part of the reason I started the blog. It’s a nice change from the short clinical articles written by doctors without nystagmus that have dominated the internet until now. I think parents especially crave a long look into living with nystagmus, because they’ll never know themselves, and it’s almost impossible for their small children to express what we can hardly express now.

    I hope I haven’t advertised your article/blog before you are ready for people to see it. I, too, waited until I was satisfied with the content on here before I really started pressing this blog. If you like, I can take this post down until you are ready, but I’ll probably complain pretty loudly about it :p

    Happy Holidays to you too!

    Jo

    P.S. Ok, after my post, your post, and both of these comments, I think we may have Tolstoy beat. And I swear I had about 2 more paragraphs in this comment about writing and editing that I deleted because they didn’t have much to do with nystagmus, but it’s just nice to talk about writing with someone, and also I’m an editor so it just comes a little too naturally…

  3. Hi Jo,

    Fear not. I won’t be pulling the article. I’m not 100% happy with it yet but I’m more happy with it than the other stuff on my blog which is just typically narcissistic stuff to no obvious purpose. At the moment I’m frustrated because I feel like I want to write but I’m honest enough (I hope) to realise when I have nothing, or nothing original, to say.

    You should have added those other paragraphs. I could talk about books and writing for hours. You probably figured that from my writing style! Don’t even start me on other stuff.

    Mike

  4. Hi Mike, My experience with nystagmus wasn’t actually assessed until I was about 45. Once I had a terrific eye doctor who did more than simply state that I had nystagmus, it cleared up a lot of self-conscious perceptions I had of myself, but mostly when I was a youth.

    In grade school and through high school, I was always the last one chosen for a sports team, and it didn’t matter what sport it was. I was horrific at all of them. Also, on vacations with my family to the mountains, when family hikes were commonplace, I was terrified of losing my footing or falling off the side of a mountain…..really! It was a reality for me! No one ever did much about it but chuckle at my ineptness at all things physical. I was very tiny also, light on my feet and should have been able to fly through the air.

    I also had trouble concentrating on reading assignments in school, but wasn’t aware of my nystagmus because I was born with it. Didn’t know any different. I was an excellent reader but always found myself having to refocus on everything I was reading.

    Another issue is that I have always been one with little energy, tiring easily and needing a lot more sleep than others! I believe this can also be caused by nystagmus. Your brain has to work harder to compensate for the rapid eye movement caused by this condition, so it tires more easily. This is how it was explained to me by my physician.

    Imagine my relief and the feeling of vindication once I learned that, after all these years, my lifelong nystagmus was the cause for all of these symptoms I described above. I have worn glasses and contacts for many years, which help me see but don’t help me with my condition.
    Driving during the day has never been problematic but nighttime driving is a real issue and I avoid it if I can.

    Just knowing the cause for all these problems throughout my life has given me some satisfaction. It wasn’t just that I was a clumsy kid for no reason. I now understand better why, when I tried playing tennis, the ball always seemed to fly through the racket! Hmmm? I could never hit it!

    If this has clarified or helped anyone with similar malfunctioning as I have experienced throughout the years, I’m glad I could help!

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