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

New Nystagmus Blog for Parents

There’s been some great responses to this blog out there, but I think this has to be my favorite. A parent was inspired to start their own nystagmus blog from a caregiver’s perspective. It’s called simply, Nystagmus Blog.

How awesome is that?!

I get a lot of feedback and questions from parents, and I know there is a lot of fear out there. Honestly, I think a nystagmus diagnosis is more traumatic for the parents than it is for the child. From a child’s perspective, they won’t really know what it’s like not to have nystagmus, so they are surprisingly resilient. For parents, on the other hand, it’s difficult because they can never truly understand what their child is going through. It can be a frustrating journey.

I encourage all the parents out there to check out this blog. It’s always good to have a community of people who know what you are going through. It’s also got some great advice and general info for parents.

Best of luck!

xoxo

Jo