The Nystagmus community online has seriously flourished since I started this. This blog has been a wonderful way to process my feelings about Nystagmus as I made my way to adulthood. And now with a baby in the car! I honestly didn’t know if I could ever say that. Congested Los Angeles traffic? No problem. By challenging myself in this way, I’ve gotten more comfortable driving than I ever thought possible. It’s less than 10 miles from my house, but it can take me up to 2 hours to get home on a bad day 😦 But the good news is, I’m sooo much more confident when I drive now. To one of the worst commutes in the United States. It is however, further away from where I live, which leads me to… After working in a very corporate environment for a long time, I’m now in a much smaller, more casual place. I now work in tech startups, and it’s pretty great. Needless to say, I learned to live on much less sleep But she’s sleeping great now, and is the joy of my life. The biggest problem we’ve had so far was that she would only sleep on me for the first four months of her life. Jury is still out on whether or not she will inherit my astigmatism. I wouldn’t have cared either way, but as you can imagine, we did look carefully for a few months. I did post about this earlier, but it’s worth mentioning again, right? 🙂Īnd to answer your first question, she does not have Nystagmus. To the wonderful boyfriend who used to drive me everywhere ❤ Our 6 year anniversary is coming up. I may have mentioned some of these things earlier, but here’s a summary anyways:
#Shifty look update
I thought I’d give you all a bit of an update on what’s been happening with me. Which I hope is great news to the parents out there who are worried about their children with nystagmus. I’ve had my first child 🙂 I feel bad for neglecting this project, but at the same time, my life has been so busy, so fulfilling, so AMAZING, that I haven’t really had time. I guess I can’t really say I’m a “young person trying to navigate through newly acquired adulthood.” I’m in my 30’s now, I’m married. So many things have happened since I started it back in 2009.
I realize it’s been a long time since I’ve posted to this blog. I’ll probably also insert my opinions about life and the world in general here and there, because hey, it’s my blog. And for everyone else out there, who knows? You may know and love someone with shifty eyes, or you may in the future. It’s also for parents of children with Nystagmus who want to know what it’s like to grow up with the condition. This blog is for all of those people who have Nystagmus but who don’t know anyone else going through the same experiences. Most shifty-eyed people live their entire lives without meeting anyone else who knows what it’s like. While these organizations are great when it comes to learning about the physical condition, there is not a lot out there that explains what it’s like to live day to day. Only in the past 15 or so years have there been any organized support or information out there for people living with Nystagmus and their loved ones. Turns out, there’s not a lot of shifty-eyed love out there. It’s difficult to explain Nystagmus and what it’s like to live with it in a paragraph, which is why I have dedicated a whole blog to this particular aspect of my life. There is currently no cure or even effective treatment. My particular eye movements are pendular they move in a smooth horizontal motion, very quickly back and forth. Mine is called “Congenital Nystagmus” which is a fancy term that means I’ve had it since I was born or shortly after. The most basic definition is “involuntary eye movement.” There are many different forms of Nystagmus, of which I will not go into great detail here. I also happen to live with a condition called Nystagmus. By trade I’m a corporate paralegal, by night I’m a superhero. I’m a young person who is trying to navigate through newly acquired adulthood. You can always check out my About page, but for those who don’t feel like clicking the link, I’ll just tell you again. Helloooo out there! I’m Jo, the founder and sole blogger (so far) for the Shifty Eyes blog.
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