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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New Job, New Challenges

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

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

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 – Getting a Job

This is a response to an article titled Nystagmus, Curse or Blessing? by Felicia Brown-Grinstead. I am using an excerpt. I encourage you to read the article in its entirety either at the above link or re-posted in this blog here.

The following is an account of one woman’s experience with having nystagmus and how it is affecting her job search.

“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.”

Ok, there’s a lot going on in these passages. First of all, I’ve never heard any dialogue on race and nystagmus before, and I think it’s a really interesting topic. To all my racially diverse, shifty-eyed friends, have you had to overcome prejudice with both your nystagmus and your race? Do you feel like both work against you? For you? Bravo to Felicia for raising this topic.

Now, as far as employment, I’m going to be a little bit critical. I believe there are two ways that nystagmus can get in the way of getting a job. The first is the obvious one; employers (and people in general) can be uncomfortable with the eye movement. If they choose not to hire someone based on their eye movement, if it doesn’t affect their ability to do the job, it may be illegal. It certainly isn’t right, and people with nystagmus have a right to be unhappy with this kind of behavior.

The second reason is perhaps the most common, and one that we don’t like to admit: the social difficulties of living with nystagmus can psychologically affect us to the point where we really lack any sort of self-confidence. I have found that generally this is more crippling than the actual condition itself. Even looking people directly in the eye is difficult, which doesn’t bode well for interviews. People with nystagmus are held to the same standards as anyone else interviewing for a job. If you can’t look someone in the eye, they won’t want to hire you.

The good news is, unlike the actual nystagmus, lack of self-confidence can be temporary. Social skills are learned. Interviewing, practicing maintaining eye contact (or for those with whom focusing is more difficult, at least looking someone straight in the face), and even just having multiple interviews all help overcome this particular obstacle. I’m not saying it’s easy to get a job, I’m just saying it’s possible.

And Felicia does touch on the fact that nystagmus can in fact make someone a GREAT employee. It gives them a determination and focus that perhaps others do not have. It’s so important to remember that if you put the work in and are qualified, not only do you deserve the job, but you could be better at it than someone else because of your nystagmus.

Now I don’t know Felicia’s situation, so I can’t comment on why she is having trouble finding employment. It definitely could be the nystagmus. It could be that the people she has been interviewing are prejudice. It could also be California’s incredibly large unemployment rate, or the competitiveness of finding good accounting jobs. Who knows? All I’m saying is there is no reason to be fatalistic about finding a job when you have nystagmus.

The trick to living successfully with nystagmus is to not let it be your excuse for not doing what you want to do. Now, there are things like driving that we will continue to struggle with, but something like getting through college or finding a job is COMPLETELY in your capacity. Look at Helen Keller. Completely blind and deaf, yet she earned a bachelors degree, which in her time, was incredibly rare just for the fact that she was a woman, let alone visually (and audibly) impaired. She continued on to build a very successful career and supported herself and her retinue of helpmates. If you have the intelligence and the drive, you can do most anything you want. Will it take more work and effort than a normal-sighted person? You bet. But it will also be much more satisfying when you get there.

The time after college is just a difficult one for everybody. So many people I know are struggling to find a place in the world where a bachelors is becoming more and more common and jobs are harder to get in general. So if you have nystagmus and you struggle to find a job, know that you are not alone, and that group includes those who don’t have nystagmus.

What do you guys think? Have you had a hard time finding a job because of your nystagmus? Do you worry that your kids will run into this obstacle? Do you think I’m dead wrong and Helen Keller was a rare case? Do tell…

xoxo

Jo

Nystagmus as a Life Challenge

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

Job – Yes, I have one!

Whew, it’s been a while since I’ve posted! But don’t worry, I’m back. I’ve just been super busy at work….

…because yes, I work! I went to college and got all edumicatedand everything. As I’ve started to reach out to my shifty-eyed community, I’ve learned that one of parents’ biggest concerns is whether or not their child with nystagmus will be able to work in a normal environment. Which shocked me, because it was something I had never even thought about. Of course I would work, how else do you live?

So, as a person with low vision, what do I do?

I’m a book editor! Yep. I read and edit manuscripts and turn them into books. I also manage the production process, which means I work with the designers who make it pretty, work with the printers who will make lots of them, and various other small jobs that you never think about, but need to be done to turn a manuscript into a genuine, beautiful, readable book.

It’s important to remember that people with low vision (or no vision at all for that matter) certainly enjoy reading just like everybody else. I was an avid reader as a child. For a few years, my bedroom was in our family’s library. I slept surrounded by hundreds of books collected over many many years (some date back to the late 19th century). Literally, anytime I wanted I could reach out and pull a book off the shelves. I began Milton’s Paradise Lost this way when I was about 10.  I can still smell the pages; books are very comforting to me.

Now obviously, my nystagmus is not so bad that I cannot read regular print books. Many shifty-eyed people out there may need a little help. However, there are a great many resources for low vision readers, and millions of books are produced in Braille every year. if you have a child with nystagmus (or if you have nystagmus) encourage them to read! Reading is so important to the development of any child.

And though some careers will not be available to people with nystagmus (i.e. the military) most careers are wide open to those who have the dedication and confidence to pursue them.

To my shifty-eyed friends, what do you do for a living?

xoxo

Jo