Out Of Orbit – My Charity Nystagmus Abseil!

We did it! 🙂 On Sunday 21 October, after a month’s delay due to the typical British weather, I finally got to do my charity abseil down the ArcelorMittal Orbit Tower in aid of nystagmus research. That’s a drop of 80 metres (262 feet) from the UK’s tallest sculpture!

It was my first ever fundraising challenge and my first ever abseil, and therefore a big deal for a beginner like me. And it was an amazing experience, which I’m excited to tell you about in this post. I’ve also made a video that includes headcam footage from my descent, so do check that out as well.

Donations closed on 23 March 2019, and I raised £920 (+ £143 Gift Aid)! Thank you all SO much! Everyone who donated prior to the initial publication of this post is listed at the end, and are also in the credits of my video (unless you were anonymous of course). But if you’d like to donate even though the deadline has passed, please feel free to donate to Nystagmus Network and/or Moorfields Eye Charity directly. Thanks!

So I hope you enjoy reading about my abseil adventure, including my fundraising achievements and what happened on the day itself! Thanks again for your support!

Contents

• Why I Did It
• Fundraising
• The Abseil
• Thank You!

Why I Did It

I took on the challenge in partnership with the Nystagmus Network and Moorfields Eye Charity, to raise money for pioneering research into the eye condition nystagmus at Moorfields Eye Hospital and UCL Institute of Ophthalmology.

I’ve had nystagmus myself (as a side effect of aniridia) since birth, so it’s naturally a cause that’s very close to my heart. Nystagmus basically means my eyes wobble and shake all the time, and I have no control over it. As a result, I can’t focus on things easily – I need to have them close up or enlarged.

It hasn’t stopped me leading a happy and successful life though. I was bullied in my early childhood, which led to serious confidence issues. But I worked through it over time to get good qualifications, secure a decent job and make lots of friends, and these days I love going out and about and doing all sorts of exciting things.

But the experience differs widely from person to person, and the amount of sight loss varies considerably amongst those with the condition. This is because nystagmus affects at least 1 in 1,000 people, with some estimates suggesting 2 in every 1,000. It can often come as part of the package with many eye conditions and other syndromes (e.g. Down’s Syndrome and albinism). But it can also occur on its own as well.

Nystagmus is a lifelong condition and there is no known cure.

Charities like the Nystagmus Network are therefore a vital source of information and support for those affected by the condition. I’m personally a member of the charity, and was greatly honoured to give a talk at their Open Day last year. I got to meet lots of wonderful people that day, and will do so again at this year’s event. You can find out more about the Nystagmus Network in this presentation by Sue Ricketts from this year’s Aniridia Network Conference.

So when I saw the invitation to do the abseil with them, I was very tempted to take up the opportunity. I live very close to the Queen Elizabeth Olympic Park in Stratford, where the ArcelorMittal Orbit Tower is based, and I knew the 20-mile views across the city from 80 metres up in the air would be incredible. I was also comforted by the knowledge that you have control over the speed as you go down. so you can take your time or get it over with quickly, depending on your nerves and your mood. And in general I’ve loved trying new things since moving to London, as regular readers of my blog know all too well. So I had to say yes really, it seemed the right thing to do.

The funds raised will go towards significant research into nystagmus, which will benefit the many thousands of people living with the condition. For instance, Mr Vijay Tailor is currently investigating congenital nystagmus and visual crowding at Moorfields Eye Hospital, while their research partners at the University College London Institute of Ophthalmology are pioneering the use of magnetic implants to control the rapid eye movements associated with acquired nystagmus, led by Dr Parashkev Nachev. And who knows what their research could lead to with sufficient funding? Technology, medicine and scientific knowledge is advancing all the time, so it’s fascinating to see what the future holds.

You can find out more about the work of all the organisations mentioned above at these links:

• Nystagmus Network – Website, Facebook, Twitter, Youtube & Instagram.
• Moorfields Eye Charity – Website, Facebook, Twitter & Instagram
• Moorfields Eye Hospital – Website, Facebook, Twitter & Youtube
• UCL Institute of Ophthalmology – Website, Facebook, Twitter & LinkedIn.

You can also find out more about the effects of nystagmus in my playlist of other Youtubers who have posted about their experiences with the condition.

Fundraising

I started by creating my fundraising page of course, which remained open until 23 March 2019. I’m pleased that I was also able to set up text donations for UK sponsors, as that proved to be very handy for some people, so I did get some payments that way. Unfortunately, JustGiving have since discontinued the text donation service, so I was one of the last people to use it. And I also used a good old fashioned sponsorship form to get money from some of my work colleagues. So I received my donations in various ways.

But I was also keen to promote myself on social media of course. I’m not a big superstar blogger with thousands of followers, but nevertheless I have built up quite a lot of connections, who I hoped might be able to donate or at least help me to spread the details around.

So I put the word out there as much as I could, including a promo video and posts on Twitter & Instagram. And subsequently, Moorfields Eye Charity kindly featured me on their website, Facebook & Twitter, while the Nystagmus Network shared my details on their blog, newsletter, Facebook & Twitter. And both charities continued to promote me at regular intervals, giving me additional exposure for which I’m very grateful. And thank you to everybody else who shared my posts as well, it really helped.

All my efforts paid off too, far better than I’d hoped! I’ve had lots of donations, both from people I know and from complete strangers, which is truly wonderful. By the time the abseil finally arrived I had nearly £900, and since then I’ve gone over that, which fantastic. And there’s at least £150 in Gift Aid on top of that (where the government add 25% at no extra cost to the donor). So again, thank you all very much!

There was a particularly big surprise in amongst all of those donations though, in the (very tall) form of Richard Osman! The co-presenter of BBC’s primetime gameshow Pointless and producer of many big TV shows donated a massive £250 (plus £62.50 Gift Aid)! Genuinely! Even now I still feel shocked by that.

Pleasure.

— Richard Osman (@richardosman) September 20, 2018

I’ve never met him and we don’t have any mutual friends that I know of. However, he does have nystagmus like me, which he’s discussed in interviews and a Nystagmus Network video. And I do enjoy watching him on the TV, he’s a great presenter and comedian.

So I decided to tag him in amongst other people I was tweeting, including a few other celebrities with nystagmus such as Marsha de Cordova MP, Sir James Galway, Kenny Rogers, apl.de.ap from The Black Eyed Peas and a couple of Paralympians. At best I hoped one or two them might like it or share it if I was really lucky. It was worth a shot at least. So I was stunned and thrilled to get that donation in response! Many thanks again Mr Osman, that was extremely generous of you!

It’s also important to note that my fundraising was actually part of a team effort. There were 10 of us raising money for nystagmus research altogether, and between us we’ve raised about £7,500, which is incredible! A big well done to everybody involved!

I’m very glad and proud that the fundraising was so successful. And the support I received during the build-up to the event – through donations, comments, likes and shares – really did give me a big boost in confidence and determination, enabling me to feel ready when the big day finally came.

The Abseil

We couldn’t get the entire nystagmus team together on the same day unfortunately, because the original date was postponed. So we all ended up doing our abseils throughout October. But I’m delighted to say that everyone was able to do it in the end.

Thankfully on my day, Sunday 21 October, I was able to do the abseil with my friends James and Claire, along with another guy called Matt who I hadn’t met before. We were all doing it as part of the Nystagmus Network team, with the exception of James Buller who was abseiling for the Aniridia Network to fund aniridia research. James and I both have aniridia and nystagmus, so it felt appropriate that we were raising money for one of the conditions each. Be sure to check out his post about the abseil as well.

We also had a mixture of friends and family members present to cheer us on, plus a couple of ladies from Moorfields Eye Charity (who had already cheered on a few other abseilers earlier in the day) and a professional photographer. So we had quite a lot of support, which was nice.

And we were extremely lucky with the weather too. We had a clear blue sky, bright sunshine, no mist, barely any wind and a comfortable temperature. It was perfect, we couldn’t have asked for better conditions. It’s like this date was always meant to be.

I was able to watch James do his abseil first, and it was reassuring to know that he enjoyed it and didn’t have any problems when I chatted to him afterwards. He then waited with his family to cheer on myself, Matt and Claire, as the three of us were booked into the same slot.

So the three of us got kitted up together, with Matt changing into his cute Tigger outfit! Luckily nobody had tried to get me into fancy dress, but credit to Matt for doing it!

The abseil is run by a company called Wire & Sky. They do abseils down the tower from April through to October, which you can book on to either for fun or with a charity. It’s not cheap, but then it is a lot of work to run it and to keep everyone safe, and it is a once in a lifetime experience. And now that I’ve done it, I can say it’s well worth it!

The instructors were so friendly, helpful and patient with us from the outset, and they had no problems with the fact that I was visually impaired. I was able to keep my tinted sunglasses on too, which was important as I’m very sensitive to the sun’s glare. And James was able to wear a peaked cap under his helmet in addition to his glasses.

As is to be expected, the trickiest part of the abseil is getting into the air to begin with. You basically have to lean backwards over the edge, bit by bit, until at you’re at a point where you can step on to a ledge that’s underneath the platform.

It was this leaning back part that I had to take my time with, as it’s a very unnatural situation to be in. It felt like I was going to overbalance sometimes, even though that was impossible in the harness, meaning my body’s natural instinct was to wobble and try to grab on to something to stand up again. Overriding that reflex reaction took a bit of effort.

But full credit to my instructor, she was absolutely wonderful. I can’t remember her name sadly, but she was superb, gently easing me over the edge while constantly reassuring me and not rushing me. Indeed, all of the members of staff I met were very keen for us to feel comfortable and enjoy the experience, they were lovely. Very big thanks to them for that, but especially to my instructor on the platform. Thanks also to my friend Claire, who was dangling off the other line from the platform, for giving me words of encouragement as well.

Once I got used to the sensation and was comfortable with feeding the rope through, which is all you have to do throughout the abseil, it wasn’t so bad. So after a couple of minutes or so I was eventually able to step down onto the lower ledge, which is tucked back a bit underneath the main platform.

Then you just have to take your feet off the lower ledge so you’re floating in mid-air with the abseil ropes supporting you. Again that takes a bit of willpower, so I didn’t rush it, but it didn’t take me anywhere near as long as the first part either. By this point I now had a good feel for what it was like to be suspended in the harness, so I knew it would hold me when I let go with my feet.

And once I was hanging in the air, I was completely fine. It was actually very comfortable and relaxing from that point. You’re just sitting there in the harness, feeding the rope through at whatever speed suits you. So I took my time with it, savouring the amazing views as much as I could.

Although I can’t see detail at a distance, I could still see a fair amount. I was able to see the general size, shape and colour of the larger, more prominent tall buildings, especially those jutting up above the horizon, and I got a good sense of how far back the view went.

I could also see the Aquatics Centre on my left, with its distinctive curving roof and big glass windows, and the huge London Stadium on the right, while directly below was a large grassy area where our friends were cheering us on.

To begin with I couldn’t see our friends on the ground at all from such a height, although I could hear them and was able to wave and shout back. But as we got closer I could gradually make out their silhouettes more easily.

Wearing a headcam was also a great decision. You can’t take up your own camera, but you can hire a GoPro from reception for £15 (card payments only). The instructors attach it to your helmet and start it recording for you, so you haven’t got to do anything with it. Then at the end, you just take the GoPro into the shop, they plug it in to their computer to get the footage, you give them your email address, and they send you a download link within 24 hours.

And I’m extremely glad I went for it. It’s a wonderful memento of the day, and by looking back at it I can see details that weren’t so clear to me at the time, even zooming in on things if I want to. The whole video lasts about 16 minutes and I’ve been loving watching it back. You can see a compilation of highlights in the video accompanying this post.

Thank You!

All in all, the abseil was an incredible, stunning, exhilarating experience. I’m very proud and pleased to have done it, and to have raised so much money for nystagmus research in the process. It’s an adventure that I will never forget, that’s for sure. Thank you so much for reading this, I hope you’ve enjoyed my post and the video footage.

There are so many people to thank for making this possible, so here are the big shoutouts I need to give.

Congratulations to my fellow abseilers Claire Amoroso, James Buller and Matthew Dawson, along with the other abseilers from the day, plus all the other Team Nystagmus abseilers who competed the challenge on other dates, and anyone else who abseiled for Moorfields this past month!

Special thanks to everyone who helped to make the event happen:

• Gabrielle Richardson, Joanne Green and everyone at Moorfields Eye Charity for your invaluable work to raise money for Moorfields Eye Hospital, and for organising the abseil. Thank you also to the charity for their photos of me that are included in this post.
• Sue Ricketts, Sara Riggs and everyone at the Nystagmus Network for all of your help and support, both with the abseil and for everyone affected by nystagmus in general.
• The fantastic instructors at Wire & Sky for keeping us safe and ensuring we had a wonderful experience.
• The staff at the ArcelorMittal Orbit Tower for welcoming us and allowing us to abseil.
• Our friends who came out to support us on the day.
• Everybody who sent me messages of support online and in person.

And finally, huge thanks to all of my generous sponsors, whose donations for pioneering nystagmus research will make a significant difference to thousands of people’s lives:

• Celebrities:
  • Richard Osman – Presenter on BBC’s Pointless who generously donated £250 (plus £62.50 Gift Aid)!
• Abseil Buddies:
  • Claire Amoroso
  • James Buller – One of the trustees of the Aniridia Network.
  • Matthew Dawson – With additional thanks for his photos of my abseil that are featured in this post.
• Blogging Friends:
  • Emma Beasley (RD Ramblings) – Blogger who writes about her experiences as a retinal detachment patient.
  • Katie Berrill (Katies Vision) – Blogger who posts about living with the visual impairment Stargardts. You can also follow her on Facebook, Twitter & Instagram.
  • Emily Davison (Fashioneyesta) – Blogger and good friend who I’ve met in person several times. She posts about disability, beauty, fashion and more on her blog, Youtube (also here), Facebook, Twitter, Instagram and the Fashionability podcast.
  • Natalie Doig (The Happy Salmon) – A fellow nystagmus patient who donated by text. Her blog about her adventures and interests hasn’t been updated for a while, but still makes lovely reading. You can also follow her on Twitter.
  • Dean & Rhona Dunbar (Extreme Dreams) – Dean was a staff member at my school that I became great friends with. He’s blind and has taken part in many extreme sports, as well as doing motivational speaking. So do check out his Extreme Dreams website, Youtube channel, Facebook and Twitter for details of his amazing adventures.
  • Fern Lulham – A brilliant motivational speaker with aniridia and nystagmus like me, who I met at the Aniridia Network Conference. Check out her blog, Youtube, Podcast, Facebook & Twitter, and her public speaking & radio broadcasting sites.
  • Emma Purcell (Rock For Disability) – Blogger who writes about disability along with her love of great music and other entertainment. You can also follow her on Twitter and Facebook.
  • Holly Tuke (Life Of A Blind Girl) – Recently voted one of the most influential disabled people in the UK on the Disability Power 100 List, Holly makes lots of wonderful posts about being visually impaired and other things she enjoys. She’s also recently started making Youtube videos, and you can follow her on Facebook, Twitter & Instagram.
• London Family & Friends:
  • My Mother, Aunt & Uncle
  • Jessica Beal – Organiser of events for South East London Vision.
  • Joyce Brennan – Support worker at a primary school I gave a talk at.
  • Marilyn Buller – Mother of James Buller.
  • Paul Chapman – Volunteer I’ve met at visually impaired social groups.
  • Rafie Cecilia – PhD researcher who I’ve met at a few museums, to assist with her study into accessibility for the visually impaired.
• School Friends:
  • Simon De La Mare
  • Pauline Edwards
  • Irene & Dave Knowles & Marie
  • Jenny Langley
• Colleagues:
  • Dave Matthews
  • Gary Rickards
  • Ian Westwood
  • Jane Perry
  • Jon Bell & Zoe Yates
  • Leanne Craft
  • Nick Jones
  • Peter Wright
  • Shaun Parsons
  • Stuart Rickards
  • Terry & Marion Baldwin
  • Terri Turnham
  • Tessa Macmillan
  • Wendy Urban
• Other Offline Friends:
  • Sarah Hewitt
  • Samuel Pattimore
• Online Friends & Followers:
  • Amelia Aslett
  • Emma James
  • Fiona Underwood
  • Katie Matthews
  • Manca Lipoglavšek
  • Paul Vassilliou – Development Manager at Central West London & North London Vision.
  • Sarah Bell
  • Steven Reid
  • Veronica van Heyningen CBE – The Patron of Aniridia Network UK.
• Anonymous donors & anyone else I’ve missed!

Many thanks for all your support, you’re all awesome! 🙂