Tag Archives: living with nystagmus

Update

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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

ANN Conference 2011 – Kick Off

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Wow!

The ANN Conference started this afternoon. Today was mostly checking in and meeting everyone; the official workshops etc start tomorrow. But I gotta tell you, it’s been really amazing so far.

I started at a round table for adults with nystagmus. And can I just say, I have never felt more comfortable with a group of perfect strangers in my entire life. There is just an instant connection; an understanding. It’s not that I feel particularly self-conscious when I meet people without nystagmus, it’s just always there in the back of your mind. You get used to expecting that look of recognition when people realize that your eyes move unexpectedly. Here, I feel an incredible freedom to look around anywhere I want and not have to potentially have that moment with someone . I don’t know, it’s hard to explain.

And that’s just it: I don’t have to explain. Everyone just… knows.

I can’t wait to get started tomorrow. I’ll be blogging straight from the conference, so there will probably be a few posts throughout the day. I will not be blogging during the Youth Panel because I’ll be leading discussion 🙂 but I will post something about it later in the evening.

I’ll also try to pick up a few more personal nystagmus stories from individuals. Maybe I can even recruit a guest blogger for down the road. If you are at the conference, hit me up people!

Talk to you soon!

Jo

Happy Two Year Anniversary!

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Exactly two years ago today I started the Shifty Eyes Blog!

Wow, what a couple of years it has been. I started this blog because i really felt like there wasn’t a lot of information about how people lived with Nystagmus available on the internet. Now there are so many blogs, I can’t keep up with them all! And I couldn’t be happier. I think connecting with other people is one of the best ways to deal with this condition, for both those who live with it and for their loved ones.

I’ve said this before, but Nystagmus really doesn’t take up that much time in my life. I’ve talked about Nystagmus more in the past two years than I have for my entire life preceding this blog. I swear, my dog’s allergies affect him more than my Nystagmus affects me. There are a lot of things I could say today, but I think what I really want to say is, turn off the computer and go live life.

We all run in to obstacles. They don’t define who we are. One of my obstacles happens to be Nystagmus, but for all I love my blog, I am not “woman-with-Nystagmus”. I’m Jo. I have a husband and a very naughty dog. I read too much, and worry about whether I should change my cell phone plan or if I remembered to make my student loan payment. I watch ridiculous reality TV shows and write a little on the side. I have poker night with my buddies and play video games with my nephew. I’m happy.

I’m Jo. Now, go be you.

ANN Conference

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Hey everyone!

I’m getting really pumped about the American Nystagmus Conference in Washington D.C. I can ‘t believe it’s only a couple of weeks away. Time has gone by so quickly!

There are two reasons why I am especially excited…

I officially have ANN permission to blog live while I’m at the conference. This means I can post pictures, videos, and talk about what’s going on at the conference while it is all happening. I hope that all of you will one day be able to attend an ANN conference, but for those of you who can’t make it this year, do not fear! I’ll try to document as much as I can so you can at least experience a little bit of it. I only wish I could attend all of the panels and discussions they have set up. It all looks pretty amazing…

The other reason I am very excited is that I will be participating at the conference! I have been asked to moderate a panel  of young people who have successfully navigated their way through life with Nystagmus. Sound familiar? Those are my kind of people! It’s a big honor to be asked to lead this discussion, and I am really excited to sit down with everyone and open a window into what it is like for a young person with Nystagmus. I think a lot of parents with young children who have Nystagmus will find this panel particularly informative. One of my goals at the panel (and with this blog) is to hopefully alleviate some of the fears that parents have when their child is diagnosed.

I think one of the biggest things I’m looking forward to at the conference is just to meet other people with nystagmus face to face. I have made a lot of shifty-eyed friends over the internet who I wouldn’t trade for the world, but I have yet come in to physical contact with someone who has the same condition as me. It’s funny, in some ways the role will be reversed for me. I’m so used to seeing other people react to my Nystagmus that I’ve never really given any thought to what my reaction would be. I have heard that it can be pretty emotional. I guess we’ll see 🙂

To all my shifty-eyed friends, let me know if you are coming to the conference! Can’t wait to meet you! And if you won’t be able to make it this year, let me know what parts you would be interested in. I’ll have to be your eyes this time. Ha, that will be a first!

Jo

 

A Great Nystagmus Blog

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Hey guys!

Life is crazy right now, my wedding is coming up (yikes!) so I’ve been VERY busy with last minute details. Work also always keeps me jumping. But I wanted to make sure I give you all a heads up: one of my fav blogs out there has recently been re-launched!

If you have been following The Shifty Eyes Blog, chances are you have already checked out this amazing nystagmus website  by a fellow shifty-eyed friend named James . He founded http://www.nystagmus.co.uk/ long ago, way before this little creation began. What’s great about his blog is that it’s not just his own musings and experiences (although that’s in there as well, and always interesting). This website hosts a forum for anyone who wants to talk about nystagmus, including people who live with it, their families, and even researchers who are involved in nystagmus studies.

It’s quite a community. While I love my blog and all of my shifty-eyed friends that follow me, sometimes you just need the support and ability to talk to multiple people who are experiencing the same things as you. The forum provides an excellent way to do this.

And after a brief down-period between Christmas and New Years, it’s back up with new content and all shiny and new looking! I encourage you all to go take a look and talk to people (if you haven’t already). I know we have a lot of new nystagmus-parents out there; here’s another great place for you to get some information and feedback.

Say hi to James for me!

-Jo

A Love Letter to Parents of Children with Nystagmus

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I have had the opportunity to view a lot of blogs popping up about nystagmus (yay!), and I noticed that the majority seem to be by parents and not by people who actually have nystagmus.

At first I was rather surprised. And then I thought about it. For the most part, children don’t really notice the nystagmus. They don’t know the difference between what they see and what is “normal.” I myself did not even know what it looked like until I was a young adult. And when I did finally see it, it freaked me out! Even though I knew a decent amount about the condition and have lived with it forever, it was still unnerving.

And now I know why there are more blogs by parents than by my fellow shifty-eyed friends. It can be scary as hell to see the first time, and I can’t even imagine what it feels like to discover it in your newborn, especially when you have no idea what it is. And you know what? I officially give you permission to feel the following:

Scared

Because holy crap, their eyes are not supposed to move like that! In the beginning, parents can go into a headspin about all the different things they think it could signify: loss of sight, neurological disorders, etc. etc. This is a condition that is not widely known, nor is there a great effort to educate the public.

Mad

Because this is not what you signed up for. You signed up for a normal child, not one with a disability. Yes, this is a common emotion, and that is totally ok. Be mad! It sucks! but then I promise after a while, you will realize that your child is totally normal, and that this is not necessarily a “disability.” I encourage you to experience this emotion as a part of processing the diagnosis, but I also encourage you to after a while, be open to the fact that this may not be as big a deal as you think it will be.

Frustrated at the lack of information

And let me tell you, I am with you on this one. I think it’s especially hard on parents. You want to be as informed as possible so that you can help your child deal with it. And you know what? You and I together, along with all of our other shifty-eyed friends and parents, we can change the lack of information out there. Write your blogs, talk to the few people who are conducting research. And talk to people like me and to other parents who are going through the same thing. In this way, we can get our own “research.” We can learn from each other.

But I hope that after a while, you step back from all of the hard core scouring of the internet and enjoy time with your child. Because it will make you crazy. And because, look! Your baby is so freakin’ cute! It is WAY more fun to play with them than to be glued to the computer screen! And oftentimes, it is more beneficial to them in the long run. They know there is nothing “wrong” with them; they just want to spend time with Mom and Dad!

Frustrated at some doctor’s “bedside manner” or lack thereof

Man, I’ve heard some awful stories. My own pediatric ophthalmologist was a saint, and I associated going to the eye doctor with watching Yogi Bear cartoons and getting a toy afterwards if I did not cry (As a side note, bribing works. I’m still able to take eye drops without a problem). But not everyone is so lucky. Also, many eye doctors are dismissive. My secret belief is that it’s because they only know enough about the condition to diagnose it and rule out other more “serious” conditions. Which is frustrating.

Ashamed

This one is the extremely large and sensitive elephant in the room. Many, let me repeat that, MANY parents experience shame of their child. They feel ashamed when someone looks at them funny or makes a comment. They don’t want people to see their babies. They wish their children were like other children.

And this comes with a huge amount of guilt.

Parents, I want you to know that it is TOTALLY NORMAL to feel this way, and so, so common. And you know what? It will go away, I promise. Please do not beat yourself up over this. I have nystagmus, and I do not blame you at all. You are human beings. The only thing I ask is that if you do experience this, you never let on to your kids, even once the feeling goes away. If my parents felt ashamed, they never ever told me, even after I grew up. And I think that it’s because of this that I can look at it more objectively now. But please, find an outlet. Blog! Talk to others who have felt the same way! It’s amazing how a little understanding can help heal all wounds.

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So Parents, thus ends my love letter to you, and it is a love letter. You have a tough job, way tougher than us shifty-eyed people do. I so admire you and appreciate all that you go through for your children. Remember to relax and enjoy them.

I will end with a little note from me to you: It’s going to be ok 🙂

New Job, New Challenges

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Hello my faithful shifty-eyed friends!

You can’t imagine the past few months I’ve had! New job (actually, new career), wedding planning…. well ok, that’s about it. But it is all-consuming! A few things I have learned in my little blogging hiatus:

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1) You can have nystagmus AND have a job that requires regular contact with high-profile executives (CEO’s, CFO’s VP’s, etc).

I now work in the corporate office of a Fortune 500 company. Crazy, right?? And I didn’t get this job through any connection or as a favor for someone. I applied, interviewed, and got the job all on my own. I find that the more I attempt to do, the more I am able to accomplish. Just imagine all the awesome things I would miss out on if I let my nystagmus stop me.

Do people notice my eye movement? Absolutely. I can see that they do. But I try very hard to choose not to worry about it. I know for a fact that people who get to know me hardly notice it after a while. It hasn’t hindered me at all.

2) Wedding planning is proving to be a larger life challenge than my nystagmus.

No joke. What I had originally intended to be an intimate gathering of people I know and love has ballooned into a 255+ member event. And a giant dress. Which I love, but makes me break into hives when I think about how much money I spent on it.

Oh well. At the end of the day, I’m just happy to marry the person I love more than anything in the world, no matter how we get there.

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Well, that’s it for now! I will really make an effort to post more. On a lovey note, I have been overwhelmed by the amount of support this little blog receives. Your comments always make my day, and I encourage you to keep talking to me and to each other.

xoxo

Jo

Personal Nystagmus Experience – Johnathan

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Hello my shifty-eyed friends!

I’m coming back to you after some time off with an awesome personal nystagmus experience from our friend Johnathan. He originally left a comment about this brilliant blog (natch), but he shared so much of his own life with nystagmus that asked if I could repost it here. He graciously gave me permission. So without further ado…

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Wow I never even knew they had a website like this lol I was just bored an started web surfin. Its kinda cool knowing theres a support group for nystagmus. I wish I knew how to post something on here bc I feel as if I have an amazing story to tell. I do have congenital nystagmus with all the horizontal eye twitches an head movements and yes it affects me physically an mentally but Ive somehow fought through it. I was always teased as a kid an still receive it today at times but this has never stopped me from making many friends, having best friends, or even having many great girlfriends who were all btw absolutely gorgeous lol (Im very picky for some reason). Anyways Im 18 years old. I played football in high school where i received many scholarships but I was just a normal sized player with a little bit of talent nothin special I was actually undersized for my position which was quarterback an linebacker. It was bc I had more heart then anybody else on that field. My mentality was an always will be is the bigger they are harder they fall and Ive gained a lot of respect/friendships due to that aspect in me. Ive been a fire fighter since 16 an have received many awards from life saving awards to top runner of the year and last year I received fire fighter of the year and was the youngest person to ever do that. Jo Im sure this will surprise you more then anything else. I broke the barrier. I am a United States Marine. Not just any Marine either, My job is infantry which means Im a grunt fighting on the frontlines of afghanistan. Anything is possible you just have to have heart. Jo this is just a summary of what Ive been through. Im kinda new to this Ive never posted a blog on a website before. I have the whole facebook an myspace page get up but not like this. I wish there was something I could do to help others.

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Woohoo! Let’s here it for the Marines!

And in case you are curious, I asked about how he is able to do that. You should know that nystagmus is usually an automatic disqualification in the US military. But he fought it, and won, which is HUGE.

AND he’s a man after my own heart who doesn’t let the nystagmus stop him from doing what he wants to do. The fact that he chooses to use his abilities to risk his life and benefit other people makes him the best kind of hero in my book.

This blog is all about supporting each other and giving each other encouragement. All of you contribute when you interact on here and on the other amazing sites dedicated to nystagmus. Just sharing our frustrations and accomplishments with each other lets us know that we are not alone, and that we are extremely normal, capable people who can contribute to society just like anyone else.

Thanks Johnathan! You are helping so many others right now by just being who you are.

xoxo

Jo

Personal Nystagmus Experience – Mike

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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.

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.

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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.

 xoxo

Jo

Nystagmus as a Life Challenge

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In my search for individual nystagmus experiences, I came across an article titled Nystagmus, Curse or Blessing? It is written by a woman named Felicia Brown-Grinstead, and I think it’s a great example of the myriad of emotions that can accompany living with nystagmus. It also brings up issues such as education, race, employment, and research.

In the name of commiseration, education, and an engaging in open dialogue, I’d like to re-post her article in its entirety here, completely unedited. You can see her original article through the above link. In the next few posts, I will extract different issues raised in this article, offer my two cents, and ask you for your opinion. But for now, here are her powerful words:

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Nystagmus, Curse or Blessing? 

Felicia Brown-Grinstead

Nystagmus is an eye disorder that I have had the misfortune of having. There are many forms, but I have bi-lateral nystagmus which means that my eyes move back and forth in a rapid motion. This disorder has been a contradiction for me in that it has been a curse and a blessing.  The curse arises in the forms of barriers and bondage. The blessing is that I am one of the most driven and determined persons I know. I do not give up easily.  This disorder is at the very core of my drive, determination and persistence to succeed in life. I have been able to accomplish relatively all that I have set forth to do in this life except the one goal that I want the most, a job.

I am a college graduate holding a Bachelor of Science Degree in Business Administration with an Accounting Concentration. I also have an Associate of Arts Degree in General Education, both earned. I thought that accomplishing these goals ( with no special programs or help ) would demonstrate my ability to start and complete goals, would show that  I am capable of handling challenges and if given a chance would make a good employee. However, I guess I was wrong.. I know that accounting would be a hard sell because of my eyes so I had a plan B that also failed. I took and passed CBEST ( California Basic Educational Skills Test ) so that I could work as a substitute teacher if unable to find employment in my degree field. However, I have not had luck in that area either.

As an African American woman, which I feel isn’t as much of a barrier as it used to be, I have had to endure not only the barrier of being Black but of being vision impaired which is the biggest barrier. Standing before perspective employers with my eyes moving back and forth has been a humiliating experience, which usually results in no employment.

Anyway, I am not here to tell you all about how hard having this disorder has made my life, but to raise the awareness level about this disorder and to demand that congress earmark monies for research into finding out how to stop it. Money also needs to be earmarked for the development of visual aid devices that are adaptable to everyday circumstances and for campaigns on tolerance and education. Employers, the general public and educators themselves need to become educated on this disorder and on such issues as:  How to treat people with nystagmus, how not to make assumptions about them or their capabilities, how to approach people in a respectful manner and how to just treat people with the basic decency that we all have a right to.

I am yelling out to all neurologists, optometrists and ophthalmologists to find the cause for this disorder and the cure for it as well. I don’t care if your reason for finding a cure is self-serving, just find one. 

It has been horrible to go through life with eyes like these. However, I feel everything happens for a reason. Maybe I was allowed to have this disorder because God knew that I would become so fed up with it that getting the word out about nystagmus would become a relentless effort on my part. Finding financial backing and talent necessary to rid this horrible disorder from the world along with being instrumental in the development of ideas on visual aid devices that do not look like something from the middle ages, that are adaptable to everyday circumstances, practical and fashionable is now one of my life’s ambitions.

A cure could have such a profound positive domino affect that the word surreal would not even come close to the awesome feeling that would occur as a result of finding the fix for it.

People living with this disorder will have a chance at a normal life. Can you imagine all of those people that can enter the workforce, which in turn would reduce the SSI payments? The depression that many feel due to lack of employment would drop drastically; employers would get employees that really want to work and the list of positive possibilities are endless.

In a world where science has made so many phenomenal advances in medicine and technology, I know without a doubt that the technology exist to find a cure, it’s just a matter of bringing this disorder to the forefront. For those not affected by this disorder, I need you to realize that there are a lot of people unemployed that don’t have to be. If society would just leave their assumptions, prejudgments and intolerant attitudes behind and give not only people with this disorder but also all people with different challenges a real chance at employment, will only increase productivity and decrease depression.

Employers also need to understand that when someone with a physical challenge is in the workplace that they may not me able to do things the same way as people without challenges, but it does not mean that a physical challenged person can’t do it. It only means that a physical challenged person has to do things in a different way.

There is also a need in law enforcement to become educated about this disorder.  The police need to know that all African-American people are not on drugs. I have been accused by the police of being on drugs because my eyes move the way they do. It is hurtful and uncalled for.  Sensitivity training is indeed a must when a police officer automatically assumes drug use is the only possible scenario.

Nystagmus and those affected by it can no longer remain silent. It is a demon disorder that demands a cure. Public awareness and federal funding for research is greatly needed. Living with the hardships perpetrated by this disorder should not exist. The technology exist to give those affected by it a normal life, however nothing is being done. That is barbaric    

“Keep away from people who try to belittle your ambitions. Small people always do that, but the really great make you feel that you, too, can become great”.
Mark Twain

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So as you can see, there is a lot going on here! I’m so grateful to her for writing about her life in such an honest and open way. You can really feel her frustration and determination. Thank you, Felicia, wherever you are, for sharing this part of your life with us.

Also, anyone who quotes Mark Twain is tops in my book!

xoxo

Jo