ANN Conference 2011 – Kick Off

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

ANN Conference

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 Love Letter to Parents of Children with Nystagmus

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 🙂

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

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

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

3 Great Things About Nystagmus

Most of the time, I don’t even think about my nystagmus. Other times, it can be slightly difficult to live with. However, on occasion, there are some really awesome things about my nystagmus that I’ve come to love.

1. It’s a great conversation starter
At times I can be socially awkward (try not to be too shocked). However, there is always one thing I can talk about safely when I get to know someone. Some people ask, but others will notice without saying anything. Either way, it makes me confident to speak up because I know more than most people about that topic, and I’m always eager to make people feel at ease about it. I also like to make them laugh, leading into positive thing number two…

2. I have a cool parlor trick
Explaining my nystagmus to people can sometimes be very dry, and at times people don’t know quite how to react. They think maybe they should feel bad for me. To lighten the mood, I’ll say, “Wanna see something cool?” and then spin around in circles like a crazy woman. Which is funny enough on it’s own, believe me. I think if that were the end of my talent it would still be pretty hilarious. Or maybe I’m just easily amused.

But I digress. Once I stop spinning in circles, my eye movement increases so quickly and to such a degree that at that point, I really can’t focus on anything at all, I just see the world spinning in front of me. They go back and forth as far and as fast as they can go. I don’t really know why they do this; my spinning must aggravate it somehow. It’s pretty fascinating to see (or so I’m told) and people usually laugh out of amazement.

And all I have to do is spin around in a circle once more in the opposite direction to get my eyes back to normal. Like I’m unwinding 🙂

Now whether or not people actually think this is cool is irrelevant. When I do my little trick for them, they know that I am not ashamed of my shifty eyes, and that I take it so lightly that I can joke about it with anyone. I really think that’s what puts them at ease more than anything else.

3. It makes me different, in a good way
Not to get all after-school-special on everyone, but I really like that it makes me unique. It’s something you don’t see everyday. It can even be a beautiful thing, in an uncommon, off-centered kind of beauty, and isn’t that the best kind there is? Besides, don’t all girls want their eyes to be unforgettable? 🙂

There are more great things about my shifty eyes, but I think those are my favorites. To my fellow shifty-eyed friends, what do you like about your eye movement? Parents, what do you love about your children’s nystagmus? I assure you, it’s not all bad. Sometimes it can be wonderful.
Jo