Meetup – Well Eye Never

May 2018 Favourites

May was a lovely month. The weather’s been gorgeous lately, for the most part, and with no major events going on it’s been quite a relaxing few weeks. But there are still various bits and pieces I’ve enjoyed, and want to mention in this latest post and video update. So I hope you find this interesting.

To start with though, I just quickly want to plug a couple of upcoming events in June that will interest some of you. They’re for people all over the world to join in with, not just the UK. The more the merrier really, as it will help to spread vital awareness in both cases.

June 20^th will be Nystagmus Awareness Day, which is its new permanent date, having moved from November. This year’s theme is Nystagmus In The Open, where people are being encouraged to do outdoor activities to raise funds and generate awareness. Sue, who runs the Nystagmus Network, is opening her garden for people to visit, for instance. People are also being invited to submit their stories online to show how amazing people with nystagmus are.

June 21^st will then be Aniridia Day. This is the second time it’s been held, as it was a big success last year. This year’s awareness campaign is called Aniridia Sight, where we want people with aniridia to share a photo or video of a scene, and describe how they see it through their eyes. So the more people that get involved, the more we can show how varied the vision of people with aniridia is. And then there will hopefully be live webinars too, for people to discuss aniridia related topics e.g. doctors, researchers, people with aniridia, etc.

So now that’s out of the way, let me tell you what I’ve been up to in May.

Building My New Social Network With A Visual Impairment

I’ve shared overviews of this story as guest posts on Scope’s community forum and the Nystagmus Network’s newsletter. Many thanks to them both for featuring me! And if you’ve found me via one of those articles or a social media promotion, hello and welcome! 🙂

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On September 30th, I gave a talk at the Nystagmus Network’s Open Day about how I had been building a new social network for myself in London. It was my first time giving a public speech about myself, but it went really well. I spoke for about 15 minutes, then we had a group discussion for the next 15 minutes. It got a very positive response, and I got chatting to many people as a result of it, so I was very happy with it. And I’ve written blog posts about how I prepared for it and my experience at the Open Day.

So this post is a written version of that speech, and I’ve posted a video version that I filmed on the same evening. Both are longer than the actual speech I gave at the Open Day, as without constraints on time or length I’ve been able to explain things in a bit more detail. So the actual speech was a slightly more concise version of this, although 15 minutes was still quite a bit of time to fill!

Obviously my situation is unique to me, and everyone’s circumstances will be different in their own way. I’m just giving examples of the things I’ve done. The overall aim is to show that it’s important and worthwhile to try things that interest you and grasp opportunities when they arise, as you never know what will result from them. You may have to push yourself out of your comfort zone a bit, and I know that can be easier said than done. It was a challenge for me, and it still can be sometimes. But the more you try things, the more confident you’ll get, and you’ll soon start to reap the rewards of your efforts. Otherwise, you’ll always be asking yourself ‘what if’, which is never helpful.

So I hope you enjoy reading this. Thank you to Sue Ricketts and the Nystagmus Network for asking me to share my story at the Open Day, and to all those who responded to it so well.

March & April 2017 Favourites

Hey there, welcome back! I’m sorry I didn’t do a Favourites post for March, but I was unwell that month with dental problems, so I didn’t end up going to any events in the end. It’s all resolved now though, and despite that setback it was still a productive month at home. Then in April I was able to go out a lot more again, by myself and with other people.

So there’s quite a lot to bring you up to date with, particularly the many outings I’ve had for tours, walks, museum visits and social events in April. I took lots of photos along the way, some of which I’ve included below, while there are more on my Instagram too. And I’ve posted several video clips on my Youtube channel, which I’ve also included below. Plus there are updates on things I’ve been doing and watching at home. So I hope you enjoy it all!