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

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5 thoughts on “Nystagmus as a Life Challenge

  1. Pingback: Nystagmus as a Life Challenge – Getting a Job « The Shifty Eyes Blog

  2. Wow, I read this article, and it I felt a connection. This is my first post here. I have an undergrad degree in Accounting, but left the field because of eye difficulties, and studied for and completed a masters degree in Early Childhood and Childhood Education in NY. I had severe double vision and lazy eye, for close to 10 years (I am 28), and recently had a third eye muscle surgery, which reduced it, so it is bearable. Now, my nystagmus has surfaced (probably 5 years now, but is prominent now because my double vision is reduced).

    I cannot drive (yet my parents continually joke about asking me to drive), I can barely keep my eyes open some days because they feel so tired. I feel like I have peices of tape holding open my eyes and someone is constantly blowing into them. My social life sucks because I am so self consious about my eyes, and I can barely stay awake past 10pm. I can only manage to tutor a few hours a day for work (which sucks financially). I get dizzy if I change direction a lot (taking off the lights from the christmas tree I got really dizzy and was actually nauseus for like an hour). I get depressed about my Nystagmus because I really feel as though my parents try their best to not talk about it or respond to me regarding it; as I was telling them how I felt after taking down Christmas lights, I got no response and they continued with whatever they were doing. I also sometime feel like things around me are moving, which I recently learned is called oscillopsia, and my balance is pretty bad. I leave my apartment as little as possible becasue doing so reminds me how much it sucks to have Nystagmus.

    Reading is almost impossible in the morning; it gets better in the afternoon, but still causes me discomfort. I am completly lost in my life right now because of my Nystagmus.

  3. Really odd, wonder why we tend to lean toward Accounting…. It’s not the numbers because numbers flip around on us… maybe it’s the consistence of the processes…a “balance” not only in the accounting aspect but also in the emotional security that is in the balance… all comes back to -0- if done correctly. Simple addition and subtraction, all in order… step one, step two… consistency… Amazing how those of us with nystagmus go to the balance…… something we are challenged with… and are driven to overcome.. Strong minded, strong willed and driven… I don’t know about anyone else, but I am extremely organized and have been praised by employers for my assistance in helping them to organize…re-vamping systems for efficiency. Go figure… Maybe I can capitalize on that drive for balance and order in finding a JOB.

    • Ms. Moore my daughter is 11yrs old and we are now stating to see her eyes move so much. i let her know that everything will be fine and iam here for her i have read all of the storys above and your story give me hope for my little girls life i thank you.

  4. I too have bi-lateral nystagmus. What I have found dificult is getting any SSI or SSD. According to them I do not have a visual impairment. I was born with nystagmus, and even though I have completed many tasks in my life (including rodeoing, cutting and several other equine related events.) Seeking a job that is worth more then minium wage is something I have not managed to do. ( I can drive but it is limited.)

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