This week I want to talk to you about something that is very hard for me sometimes to talk about to .....or with people who are not involved in my life on a more personal level. It really takes courage and strength to talk about things like these, exposing yourself and being vulnerable ....especially on the Internet where people tend to me more confortable with lets just say.....being unkind to others while hiding behind the screen. I want to talk about the eye condition I suffer from since I was born. I want to talk to you about my experience with Congenital Nystagmus with Strabismus.
Nystagmus is usually infantile, meaning people have it from a very early age. Experts say that about one child out of every several thousand has nystagmus. So that basically means I'm not exactly alone ....but sometimes the condition can feel quite isolating.
Congenital nystagmus is present at birth, which is the eye condition I suffer from. I was born with it and never really experienced life or my vision to be exact without it. With this condition, your eyes move together as they oscillate (swing like a pendulum). Most other types of infantile nystagmus are also classified as forms of strabismus, which means the eyes don't necessarily work together at all times. Which as I mentioned above, I also have and in layman terms is called being "cross-eyed".
All forms of nystagmus are involuntary, meaning people with the condition cannot control their eyes. Though I was never really targeted or picked on in school about it and was a rather quiet and reserved type of a child who spent the wast majority of their time in library reading tons of books. I remember, when I was younger other kids would ask me "How do you do that thing with your eyes?" I used to laugh it off and answer them "Well it's a secret but I bet you can't". This was my way of coping with something I felt self conscious about since I can remember. Nystagmus improves slightly as a person reaches adulthood; however, it worsens with tiredness and stress. I have noticed that when I'm especially stressed, nervous or upset about something my eyes will move more rapidly.
Having nystagmus affects both vision and self-concept. Most people with nystagmus have some sort of vision limitations because the eyes continually sweep over what they are viewing, making it impossible to obtain a clear image. For this reason, sometimes it takes me longer to either notice things at a distance or sometimes focus on a particular thing I'm trying to see better.Some people with nystagmus have so many vision problems that they can be considered legally blind.
I remember as a child I would frequently be perceived as clumsy when in reality nystagmus can after your vision's depth perception. visual ability to perceive the world in three dimensions (3D) and the distance of an object...so sometimes I would trip or hit into things that are other people had no issues seeing. Even people wearing glasses ....but without having this condition. is the
If you have nystagmus, not only is your appearance affected, but you literally see in a way that is different from people who don't have the condition. Your eyes are in constant motion and the constant questions and confusion about your eyes by others (mostly strangers you encounter everyday) is a sometimes a very clear reminder of how "different" you are from others. And sometimes that is not the easiest to deal with. I guess it would depend on your emotional state at the time of when the questions are asked. But admittedly for the most part things can feel more uncomfortable than necessary....
When you have nystagmus, you must deal with the personal and social consequences of this difference. We are all judged everyday by different people in our lives on different things. That is something nobody can escape really. But when you have an eye condition such as congenital nystagmus people may conclude you maybe less capable than others right off the bet which is not true nor exactly fair in many cases.....though in some it could be that the condition is so severe that it literally disables the person from having and leading what the majority would consider a "normal" life. So sometimes it can feel like being turned down before getting a fair chance even .....which can be to say the least very frustrating. Nystagmus can affect nearly every aspect of your life, including how you relate to other people, your educational and work opportunities and your self-image.
I have many hobbies and many things I love to do. I love to cook, travel, swim, write, read, fashion design, travel, languages, learning about different cultures, shopping, makeup, painting and drawing (which some people can't understand how I am able to do with my vision and eye issues). I'm just a person who is passionate about life and things I love to do ....and I have decided long ago not to allow nystagmus stop me from living and enjoying my life even though sometimes this is hard to put to practice. But.....there is always a but somewhere :) ......congenital nystagmus is an eye condition not who I am.....therefore it should not define me as a person. I should not ever allow it to. If you are reading this and you or somebody you know suffers from this or a similar eye condition counseling may be helpful as you face the social and personal challenges often associated with nystagmus. Perhaps learning more about it and reaching out to others in similar situations might be helpful.
Several medical and surgical treatments that sometimes help people with nystagmus are available. Surgery usually reduces the null positions, lessening head tilt and improving cosmetic appearance. Drugs such as Botox or Baclofen can reduce some nystagmic movements, although results are usually temporary. Some people with nystagmus benefit from biofeedback training and generally contact lenses tend to be more beneficial for the clearer vision and for preventing or slowing down the eye movement.
I'm not sure how many of you that don't know me in person, have actually noticed my condition. Because I do try to hide it to some degree in the pictures and videos I have put out there. And, nobody ever asked me about it .....well there was one person who did few years ago thru You Tube, because her daughter had it......but besides that I never was asked about it online nor I really wanted to discuss it further. Partially because sometimes it can be very uncomfortable talking about it ...and partially because of my need to be "normal" like everyone else. Which I think is very understandable by most of us. Today though I decided to actually acknowledge that I'm definitely not like everyone else :) ......and I decided to open up and talk about this straightforwardly in hopes of helping someone out there who might be stoping themselves from living their life to the fullest potential because of this condition that they never wanted or had control over.