Unexpected Effects - Living With Nystagmus

Life With Nystagmus
#1

First Appeared on Matthew.media

In the following blog article, I share some of my lived experiences with Nystagmus. Some things I feel are overlooked, I aim to educate and share my experiences in hopes they are of value to new parents or someone with Nystagmus.

Housekeeping

I’m not a medical professional and at the time of posting have no medical qualifications.

Never substitute the information from this blog for advice from a trained medical professional, these are my thoughts on my own lived experiences.

The opinions expressed are my own and have been formed by lived experiences.

I CAN’T SEE YOUR PHONE!

This is a millennial issue, people quite often will show me things on their phones, but what they don’t realize is nine times out of ten, I simply can’t see it.

Yes, I can see it’s a photo or text, however, I can’t pull enough detail from the glowing square in the palm of their hands to receive the intended message.

To avoid embarrassment, I’ll generally gauge the tone from the person showing me… Are they laughing, do they look angry? – I then provide them with a fairly generic ‘safe’ response.

The easiest way to avoid this is by asking the person to send you the content via direct message or ask to hold the phone.

“Can you link me,”

“Can I have a better look?”

You might want to explain why you are asking for it to be sent to you as opposed to just looking on their phone, the unintended effect is they might think you are not interested or you have some germ phobia.

Sports With Fast Moving Objects.

Put simply, sports with fast-moving objects are a nightmare for me living with Nystagmus.

I won’t speak for others and must stress that you still encourage your child to try ball sports, but retain empathy and understanding.

I feel I have a much higher chance of taking a cricket ball to the face than say someone with 20/20 vision.

PE at school was particularly challenging considering most sports involved outdoor activities.

I can recall one particular afternoon when my PE teacher thought I was being lazy and didn’t want to improve my game.

He demanded I keep retrying to hit an incoming ball, I missed about thirty times consecutively.

I can still feel the embarrassment I felt in front of my peers.

The school understood my eye condition, but for some reason, this information hadn’t made it’s way to the PE department.

Now as an adult I favor activities like bowling, it’s a social and competitive sport and one that I can see the ball.

it’s all about how I release the ball, not try and intercept a small object flying at me.

Same Order At The Café or Restaurant

In the past, I would order the same item from the menu, not because I wanted to but it was something that I could recall they serve as I could not see the menu.

I would do this to avoid embarrassment, especially if in a social setting, if the café was busy or if I was on a date.

Staff don’t always understand why you can’t see the menu and be prepared for the frustration of them pointing, tapping towards a menu.

Thankfully times are changing,

Now I use my phone’s camera to take a picture or zoom into the menu.

Online menus are now very common and most restaurants will publish the menu in some form digitally.

I’m Not Intentionally Being Rude

I can’t see people at a distance, and by the time I realise who you are, you could be a km away in a car by now.

Nystagmus makes it difficult to recognize the details of the faces.

Not saying hello is a big deal!

In the discipline of communication, a communication theorist would refer to this as phatic communication.

The message is highly redundant, meaning we aren’t really saying much, but its purpose is very important to ensure that the channel of communication doesn’t deteriorate.

Put simply, by not giving someone a nod, or a “hello”, can breakdown relationships and people think you have ‘snobbed’ them.

Your Feedback

I value your feedback and would love to hear your thoughts in the form of a comment below. Do you have Nystagmus, is this post relatable or did I miss something?

If you found this content of value I’d appreciate it if you shared this with your network on social media.

Looking For More Nystagmus Content?

#2

Hi,

Yes, I agree with all of that. Most situations generally throw up an issue due to nystagmus. But the phone one is a great example.

Is is sometimes easier now with the technology in cafes etc, but generally if people are aware of the difficulties we have, especially work colleagues and friends, they do not mind making a slight change to accommodate. Unless we make people aware they will not generally know we have problems. From my experience it’s a two way street and we can all learn from each other.

#3

Hey Glen,

Great to have you here in our community and thanks for your thoughts on this. You are spot on! - I’ve found it to be a two way street also.

I’ve been experimenting with how to convey the message in the shortest way without confusing the other party, I find saying something as simple as “Sorry I cant see it” or “hold on mate, let me get a better look at that,” is enough to do the trick.