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.
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.