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!
Contents
The Invitation
It all started when Sue Ricketts from the Nystagmus Network got in touch with me. She had seen my blog and wanted to know if I would write a piece for their online newsletter. Initially I was asked in December last year just as I was about to move house, so it wasn’t possible. But when Sue got back in touch in July, I was much more able to do it.
So in August, I sent her a short article about my relocation to London and how I’d been settling in, including a few photos for her to choose from. She loved it, which was very flattering in itself, and she’s now published it. But then came the surprise – she asked if I would be willing to give a speech at their Open Day! In particular, she wondered if I would talk about how I had been socialising in London, to build up a new network of friends and acquaintances from scratch. I had briefly touched upon it in my article, but she felt it would be useful to their audience to hear me talk about it in detail.
Now, I’ve never done any public speaking about myself before. The only time I’ve got up in front of a huge crowd to talk is for the best man speech I did a couple of years ago, which is a rather different situation to this. That was for my best mate, there wasn’t a chance I was going to say no to that or let him down. I was still really nervous about doing it, but for your mates you’ll do anything.
Here, though, I could in theory have said no. I could have respectfully declined if I’d wanted to. It wouldn’t have been the end of the world. But I didn’t refuse, I didn’t feel the urge to. I was extremely flattered to be asked, knowing that there was such an interest in the things I was doing. Being told that your experiences could be an inspiration and reassurance to others is, even for relatively shy people like me, a nice caress for the ego and a boost to one’s confidence. If talking about my experiences can help others, then that makes it very worthwhile. It was also reassuring to know that I wouldn’t have to talk for the entire 30 minutes of my time slot. If I could make it interactive, so others can chip in with their own experiences and thoughts, that would be great.
I also knew that I could speak in public, because of the best man experience, so I couldn’t pretend to myself that it wasn’t possible. And, as has happened so many times now since I moved to London, I was being presented with an intriguing opportunity to try something new and different. And I’ve been trying to embrace those opportunities as they’ve arisen, as they’re exciting and enlightening.
So I accepted the offer, booked my tickets for the train and the Premier Inn near to the venue.
Writing & Rehearsing
I then gradually worked on my speech over the subsequent weeks. Getting the basic order of the speech together wasn’t difficult – after all, it’s my life, and I know what I’ve been doing over the past year and why. It was really a case of cutting it down, focusing on the important aspects and trying to keep it interesting.
I didn’t want it to come across as if I was bragging about my experiences and showing off. But I had to explain what I had done as well, as I wanted to show that I was proud of what I’d achieved, in order to demonstrate that there are a variety of ways of building a social life. So, for me, I’ve found success with non-disabled social groups like Thinking Bob, visually impaired social groups like London Vision, the personal connections I’ve made by going to VocalEyes tours, and the people I’ve met up with as a direct consequence of my blogging and video making such as Fashioneyesta. They’re all distinct elements so, including my reasons for moving, I had a number of distinct segments to work with in my speech.
Ultimately, I wanted to demonstrate that it’s worth trying things, whatever it may be that interests you, even if that means going out of your comfort zone into unfamiliar territory. Because you never know what might result. I’ve had a lot of surprises this year, and I know many other bloggers have had unexpected outcomes from their work too. So it’s well worth doing the research and grasping opportunities that tempt you, just as I wanted to do this weekend.
So I gradually put something together, and started to rehearse it. I wanted to have it in my mind as firmly as I could, as I didn’t want to have it all written out on the day. The last thing I wanted was to have my nose buried in a handful of papers or staring closely at my phone. If I could do it from memory without notes, that would be preferable. And that is what I did. I didn’t memorise a word-perfect version of the speech – as it’s my own life, I didn’t feel I needed to. I just made sure I memorised the order, including the landmarks and key points I wanted to hit along the way. As long as I knew roughly what I was going to say in each segment of the speech, that would be enough.
I also timed myself saying it. I knew that I would probably be quicker on the day, when caught up in the moment and wanting to get it over with. But using the stopwatch on my phone gave me a good indication of how long it would take, and I was consistently hovering around the 15 minute mark. And that was ideal. I now knew I could fill the first half of the workshop with ease, while still leaving the second quarter of an hour for questions and discussion. I just had to hope that people would actually want to talk, so I didn’t have a silent 15 minute gap to fill! So when the weekend came, I felt I was as ready as I was going to be.
Travel To Birmingham
So on Friday evening, I made my way to Euston station, which I’ve never been to before. And it was absolutely packed with people all eager to get away for the weekend.
I found my train listed on the departure board easily enough. But then we all had a bit of a walk when it came up as boarding on platform 16! The entrance to that particular platform was practically jammed with everyone trying to get on, so a member of staff directed a whole group of us further down the corridor so we could get on to the platforms from the side of the station, completely bypassing the ticket barriers (which I think had been left open at the main platform entrance to ease overcrowding anyway). But that brought us on to platform 18, it turned out, which threw me a bit.
So I then had to find my way across to platform 16 from there, which took a couple of moments to figure out. And when I got there, I still had a fair walk, as I was next to carriage K, and my seat was in carriage C! So I started walking down the platform a little way, but I was also conscious that time was getting tight, and I didn’t want to miss the departure. So, along with other people who were clearly having the same concern, I hopped on to the train at carriage G, and we gradually made our way down through. I was having to manually go through the alphabet in my head to start with – hoping no letters were being skipped – as I couldn’t see the signs inside the linking sections between carriages to say which letter we were in. It was only when we got as far as E that I saw the red sign with a big white letter up to my right by the connecting door. So that helped.
Finding my actual seat wasn’t particularly easy either. The numbered signs are tucked away under the luggage racks, just above the windows, and they’re not very big. So if you have rubbish distance vision like me, it’s not very convenient. You either have to ask people, or you have to lean over them to look at the numbers by the window, being careful not to bang your head on the luggage rack as you do so. I did find my seat though, so it was fine. And as it turned out, the train ended up leaving 10 minutes late anyway, as they had a door in carriage K that wouldn’t work, and they couldn’t repair it, so that door was out of action for the rest of the service.
The train journey itself was fine. On the way, I listened to the first few chapters of The Screaming Staircase by Jonathan Stroud, the first book in the Lockwood & Co series, about child investigators dealing with ghosts. And I listened to a bit more on the way home on Sunday as well. It had been recommended to me by Emily Davison from Fashioneyesta, and it’s very good so far. It’s very nicely written from Lucy’s perspective, with plenty of humour, tension and backstory, and is well narrated by Miranda Raison. So I have a feeling I’ll be catching up with the whole series at this rate. It’s been the perfect catalyst to get me signed back up to Audible again too, as I keep meaning to listen to audiobooks more.
Arrival In Birmingham
Once I got to Birmingham New Street, my immediate reaction (to paraphrase my thoughts politely) is that the station is massive! It’s a huge, wide-open space with loads of platforms and tons of shops, with a huge shopping centre on the upper levels featuring a John Lewis store among other big names. The station does look impressive, including the windowed ceiling in the main concourse.
But it’s also confusing to navigate when you’ve never been there before and can’t see perfectly. I now had to find the right exit to get to the Premier Inn and, while they are accurate when they say it’s next to the station, what they don’t tell you is that the station is huge and it’s pot luck whether you get the right exit or not! And I didn’t get the right one. The only obvious member of staff I could find to ask for directions was a cleaner, and even he hesitated before pointing towards one of the exits – you know, that classic “over there” moment that visually impaired people like me cringe at. Still, it was all the information I had, which was better than none. At least I could actually get out of the station, that was a start!
So, out on the street, I then tried using both Google Maps and Apple Maps to locate the hotel. But given the complex layout of the area, and the fact that the Premier Inn isn’t technically on the street (it’s on a sort of raised walkway between the station to street level), it still took me at least 20 minutes to find it, narrowing it down to a smaller and smaller area until I recognised where I was from my previous research on Street View in the area. And I know from Twitter that it took another person from the Open Day even longer. It’s not the best designed area if you’re trying to find one specific shop, hotel, etc, that’s for sure.
Once you’re in the Premier Inn though, it’s fine. You go up in the lift to floor 0 (as you enter on -1), to check in – which I had done online, so all the lady at reception had to do for me was type in my name on the computer screen to retrieve my keycard. It was quicker and easier than me fiddling about with it. You then use your card on the black box in the lift so you can press the buttons to the upper floors. Those buttons are nice and big, which is good, and the signage in the hotel is easy to read and follow. So after struggling to find the place to begin with, I found my room instantly without any hassle.
So now that I was somewhere new, away from home, the reality was starting to dawn on me a bit more, and I definitely felt more nervous than I had previously. But by rehearsing my speech a few more times before going to bed, I felt fairly confident that I could get through it. I would soon find out the next day in any case. The moment was finally here…

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