Category: Nystagmus

Speaking At The Nystagmus Network Open Day

On Saturday, I attended the Nystagmus Network‘s Open Day in Birmingham, the first time I’ve ever been to an event of this nature. The only time I’ve previously met a group who share one of my eye conditions was after Sight Village last year, when I got together with a handful of people with aniridia in a coffee shop. And that was wonderful, but this weekend’s event was on a much bigger scale. This time, I was going to a big conference for people with nystagmus with hundreds of people in attendance. And I was very much looking forward to.

However, I was also nervous, because I had been invited to be one of the speakers – making this the first time I would ever give a talk in public about myself. I wrote in my last post about how this came about, and how I prepared for it. So now I want to tell you about the day itself and how it went.

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Preparing For My First Public Talk

This weekend I was invited to attend the Nystagmus Network Open Day in Birmingham. Although I’ve been to things like Sight Village before, where I got to meet a handful of people with aniridia, I’ve never been to a large, dedicated conference for people with the same eye condition to network and find out information. So that in itself was going to be interesting.

But I wasn’t just a regular attendee – I was going to be one of the speakers! So that meant doing another first – publicly talking about myself and my life. This was naturally a daunting prospect, but exciting too. So I agreed to give it a go, it was worth a try.

And I wanted to write in detail about my experience, which I’m going to split over a couple of posts so it doesn’t get too long. I’m then going to publish a written article version of my speech here, and a video version on my Youtube channel, so you can see what I said, and maybe it will give you some inspiration and reassurance too. So I’ve got quite a bit to share!

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Journal – May-June 2016

Welcome back to another set of journal entries. Things were pretty quiet between February and April, hence I’ve waited until now to do an update. So there’s plenty to mention here, including good news about our planned house move, my first proper attempts at blogging, some notes about the elections and EU referendum, and more. I hope you enjoy!

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VIP Tag

While looking around Youtube channels and blogs by other visually impaired people, I’ve seen the VIP (Visually Impaired Person) Tag come up numerous times. And thanks to the wonderful Emily Davison from Fashioneyesta, I was finally tagged to do it.

It was originally created by Chatty Chelby, and it’s an interesting way of telling the community about yourself. So I’ve put my answers together in this post, and have also produced a video version too. I hope you enjoy my responses!

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Living With Nystagmus

Following on from my previous post about Aniridia, I want to use this post to talk about another condition I have – Nystagmus (specifically Congenital Nystagmus, meaning I’ve had it since birth, as I have with Aniridia).

As mentioned in my Aniridia post, I’ve had my visual impairments all my life, so I’m used to them and have adapted to them. They certainly haven’t stopped me living a happy and successful life – and others deal with it very well too, including TV’s Richard Osman. So these posts aren’t intended to be negative. I just want to describe the main effects they have on me.

I’ve also made a video about living with the condition, which may help to explain things further.

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