Update

Hello Shifty-Eyed friends!

I realize it’s been a long time since I’ve posted to this blog. So many things have happened since I started it back in 2009. 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. 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. Which I hope is great news to the parents out there who are worried about their children with nystagmus.

I thought I’d give you all a bit of an update on what’s been happening with me. I may have mentioned some of these things earlier, but here’s a summary anyways:

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I Got Married

To the wonderful boyfriend who used to drive me everywhere ❤ Our 6 year anniversary is coming up. He is an amazing partner.

I Got My Drivers License

I did post about this earlier, but it’s worth mentioning again, right? 🙂

I Had a Baby!

And to answer your first question, she does not have Nystagmus. I wouldn’t have cared either way, but as you can imagine, we did look carefully for a few months. Jury is still out on whether or not she will inherit my astigmatism. She is my best girl, and so much fun. The biggest problem we’ve had so far was that she would only sleep on me for the first four months of her life. Needless to say, I learned to live on much less sleep O_o But she’s sleeping great now, and is the joy of my life.

I Advanced My Career

I now work in tech startups, and it’s pretty great. After working in a very corporate environment for a long time, I’m now in a much smaller, more casual place. It is however, further away from where I live, which leads me to…

I Extended My Commute

To one of the worst commutes in the United States. 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. Because it forced me to be. By challenging myself in this way, I’ve gotten more comfortable driving than I ever thought possible. Congested Los Angeles traffic? No problem. Freeways? Annoying, but doable. Driving at night? No big deal. I’ve done it all. And now with a baby in the car! I honestly didn’t know if I could ever say that. I’m so grateful.

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This blog has been a wonderful way to process my feelings about Nystagmus as I made my way to adulthood. The Nystagmus community online has seriously flourished since I started this. There didn’t used to be much, but now with the advent of social media, more and more people are connecting every day. It’s lovely to witness. I encourage all of you to continue to connect, write about your experiences, and talk to each other.

I will probably not post on here very much going forward, but I will always keep this blog live so that you can see my experiences, and you can connect through the comments as much as you want. I do read all of your comments and follow your responses to each other. I’ll try to chirp in when I can.

My parting advice for you is this: Never set limits for yourself or for your children. You don’t know what you can or cannot do unless you TRY. Sports? Yes! Driving? Yes! Jobs? Yes! And maybe you try something and it doesn’t work out or it isn’t for you. That’s ok! Now you know, and it’s on YOUR terms. And you never know, it may work out later.

Live your life to the fullest, and don’t let anything – not even shifty eyes – stop you from achieving your goals.

xoxo

Jo

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Nystagmus and Driving – Part 2

Today I got my drivers license. 

I know I haven’t posted on this blog in a long time, but I wanted you all to be the first to know.

I am 28 years old now. This has been 12 years in the making. There were no tricks, no hoops to jump through. I had to pass the eye exam to get my permit, which I did (with glasses). I then had to pass the driving test, which for me was the hardest part. I don’t know if it was just the importance I had put on this particular milestone, general fear of actually operating a vehicle, or some sort of test-taking anxiety, but when it came to taking the actual behind-the-wheel test, I completely lost my cool. Which is very unlike me in other aspects of my life. It was an issue.

But after several failed attempts (I honestly don’t know how many over the years; I lost count), today I passed. Not perfectly, but I passed.  

So to my shifty-eyed friends out there who were told you would never be able to drive, don’t let that stop you from trying. And failing. And trying again. Because I swear to god I thought I would never be able to do it, and I DID.

xoxo

Jo

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

Nystagmus and Driving

This may be one of the most sensitive topics for people with nystagmus. As you can imagine, anything that affects your vision may affect your ability to operate a vehicle. Let’s talk about driving and nystagmus in general, and then I’ll tell you a little more about my experiences.

Can people with Nystagmus drive?

It depends on three things:

  1. How extreme the nystagmus is. It may be that a shifty eyed person needs to get a note from their optometrist/ophthalmologist saying that it is safe for them to drive.
  2. General vision. Many times nystagmus is accompanied by low vision. A person with nystagmus will need to take the same eye exam at the DMV as any other person would do. This test can be taken with glasses on, but that will mean that the driver would need to wear the glasses at all times while driving.
  3. Where the person lives. It’s my understanding that in the UK, the driving requirements are much stricter than they are here in the US, and it’s much more difficult for people with nystagmus to get a license there. Also, every state in the US has different driving requirements.

Do I Drive?

No, I do not. Can I drive? Technically, yes. In the past I have gotten my permit, and have driven a great deal. However, I have never gotten my license. Just because I can drive does not mean that I am comfortable driving. Because of the way my particular nystagmus reacts to movement, fast glances and checking blind spots are challenging. I’ve been in some close calls before. My worst nightmare is not seeing someone in time, making a movement, and then getting into a huge accident on a freeway that kills somebody.

So, for this reason (and others not having to do with nystagmus) I have chosen not to drive for the moment. This may change someday, especially if I have kids and need to drive them around. But even if I do get my license, I will probably keep driving at a minimum

Does not driving affect my life?

Yes, it does. This is probably the single greatest nystagmus-related challenge for my personal life. I live in Los Angeles, which is probably one of the biggest pro-driving societies in the world. Not driving can be seen as being irresponsible. It also means that the public transportation system is often times lacking. In order to have any kind of personal life, I depend on getting rides from other people. My friends have been great about this, but I know that sometimes it can be frustrating for other people. I try to pitch in for gas if I’m being toted around a lot.

I do have a fantastic boyfriend who is very understanding about my not driving. I won’t lie though; it has come up as an issue. I can imagine how frustrating it is when there is a family event at his house that he has to pick me up and drive me back for. It also affects how much he can drink when we go out, which isn’t fair to him. He is very kind about it, and has let me taken my time with the driving issue. He never complains to me, and for most of the time, it’s not a problem. But I can see that it’s frustrating sometimes. I struggle with a lot of guilt about this.

As far as work goes, luckily, I work just blocks away from my house, so I have avoided the challenge of getting to work for now. Whew!

So yes, driving is an issue all shifty-eyed people have to deal with. It’s a sensitive topic. No body likes to think they can’t do something simply because of the way they were born. We appreciate all the understanding and shifty-eyed love from all the “normal” sighted folks out there 🙂

xoxo

Jo

*** (Hey all, there are updates to my driving journey here and here. It’s good news!) ***