Towards the end of last year I started communicating with Dan via Twitter. Dan was working with Radio 4's In Touch and was keen to get me on radio to talk about Usher Syndrome.
As Christmas got nearer we decided to look at doing something in the new year.
One of the programme producers was in touch by email and we discussed my needs and what I would speak about.
The date was set for Tuesday 20 January 2015.
The Radio 4 Studios are in central London, somewhere quite unfamiliar to me, it's busy and worse it was going to get dark! Fortunately my best friend Kyra knows me well and is brilliant at stepping in to help when I need her.
For me planning ahead is very important, however there are some things I cannot plan and that does make me anxious. I was concerned I would struggle to hear well enough to come across well.
Would the studio be dark, would there be bright lights shining at me, would the studio echo, would Peter White be too far from me for me to at least lipread a little, would I mishear - everyday concerns but when appearing live I was worried!
This is Usher Syndrome and I'm used to it but when I'm given the chance to raise awareness with a huge audience I want to get it right.
I should mention I did not have my new Resound Linx2 smart hearing aids back then. They have certainly made a huge difference to my ability to access sound in the more difficult and challenging situations as described above.
Thankfully I was very well looked after by the staff at Radio 4, I got to meet the inspirational Peter White and Dan, who deserves a huge thank you - THANK YOU DAN.
This blog isn't really about me but about "Accessible Social Media" and how powerful and in this case, positive and for me, quite magical.
Without it I would not have appeared on Radio 4 without it I would not have found Dan and without my radio interview about Usher Syndrome and its many daily challenges I would not have reached an audience of millions including the man that is Andy Gill.
Andy not only found Molly Watt Trust on Twitter but has kept in touch and supported the charity since then promising to run The Great Northern Run for us and even though he is a very busy man, he is doing it exactly that.
I have to admit when I read his bio (below) I felt very humbled and a deep pride that this wonderful man, a complete stranger not only listened and took on board what I had said but has been inspired enough to want to help raise awareness and fundraise for the Usher Community - thank you Andy, I hope to be able to come meet you and cheer you on in September.
Andy Gill's Full Bio
On Tuesday 20th January I was driving to Swindon from Alnwick in Northumberland and if I’m not listening to some music I would stick Radio 4 on. Not that I’m an oldie or boring but they do actually have some good material on there that can take you through 200 miles without you realising.
Now on this particular evening I listened to an article on “Usher Syndrome”….. Obviously at first glance you’re thinking the same as me, it’s for those people who don’t like Usher’s music but that wasn’t the case. I am not going to go into detail as it would be worthwhile visiting to gain a more thorough understanding for yourself.
I was touched by the content, by the delivery, the honesty, openness, and felt that I had just been educated on the issues people with “Usher Syndrome” can encounter. Bullying, coping with people’s naivety to what other normal looking people can suffer from, lack of support from multiple education factions, and more.
Molly Watt took me on a journey that evening that truly pulled at my heart strings.
I for one didn’t appreciate that this is a progressive condition, however, it doesn’t take a genius to realise that without the correct support network of family, friends, organisations and people like me who stumble across the Radio 4 programme that evening, that people living with Usher Syndrome are living a tough and challenging life.
If I can do anything that makes the slightest bit of difference to Molly, along with other people who have this condition, then I will certainly try my hardest.
On the 13th September 2015, I will be running the Great North Run. Now on my previous 2 attempts I was thwarted in my efforts to break the 2hour barrier by changing my running pattern accommodate 1) a friend who wanted me to wait while he had a pee that appeared to take 20 mins…. 2) to run with my lovely cousin who I must say did absolutely great and I thoroughly enjoyed it even though I shortened my stride and I probably ran the equivalent in steps of 20 miles. Anyway, 2 great runs and both of them were for Children With Cancer or CWC @CWC (Twitter).
Last year I had a ballot place which I deferred to this year as I had work commitments that meant I couldn’t make it. So, rather than run for a recognised national/global charity I asked Molly if it would be possible to represent The Molly Watt Trust and I was delighted to say Molly kindly accepted and has designed and made up a cracking running top which I will wear with pride. I probably won’t achieve sub 2 hours but a lack of true training, new born baby, lack of sleep, I love my food too have all contributed to me remaining “HEAVY”….. I will however enjoy the day knowing that this little run, yes 13 miles, may have generated some additional funding for The Molly Watt Trust and in turn people who have Usher Syndrome may benefit in some way.
Now, if you’re reading this you may want to support me and make a donation or even set me a challenge by stating you will give more if I achieve say sub 2hr 20min for example. Be realistic!
Whatever happens on that day, however much I can help raise towards MWT I will continue to look for ways to support Molly and her trust.
What I will also say is you don’t have to have met Molly to support her. I haven’t but I feel there is a need to raise awareness of Usher Syndrome and the issues these normal looking folk encounter on a daily basis that we all take for granted.
PLEASE GIVE GENEROUSLY
Thank you Andy
Well, here I am with some amazing friends and family( I'm the short one with red hair!!) getting ready to take part in my very first charity event here in Ireland to raise funds for the Fighting Blindness.ie.
It was an amazing but extremely tough challenge in the Glendalough Valley in the mountains in Co. Wicklow, especially as it was my first time partaking in such an event. Admittedly, I'm so delighted with myself for completing it and not even the sore legs can take the smile off my face. It was also a very important event for me personally, as while fundraising I decided it was time to reveal to everyone that I am losing my eyesight and that it is due to Usher Syndrome type 2. Only some of my close friends and close family knew beforehand, and even though they had given me enormous support and still continue to do so, it was time to make others aware. I wasn't diagnosed with Retintis Pigmentosa until March 2013, a few weeks before my 34th birthday. It was with complete and utter shock to learn of this diagnosis and I don't think i could ever forget that day, how could anyone really? After diagnosing me with RP, it suggested that it could be due to Usher Syndrome and I was urged to find out more about this condition. I left the ophthalmologist's office having heard his words but not comprehending what he actually meant. It was only when I got home and like everyone does, I 'Googled' it all. That's when it hit me, I'm going blind. When he spoke of my eyesight getting worse and worse but hopefully I might have good central vision for another 10/15 years, that's what he meant, I'm going blind. He talked of the possibility of gene therapy which looks promising but probably not for another 15/20 years, he meant I'm going blind and there's no cure at all. It was really difficult to believe that I was having to deal with going blind when I was already deaf. Kept thinking was this 'supposed god' having a laugh? Reading up on Usher Syndrome, I knew straightaway that it was what I had and more than likely it was type 2. It really was like reading about myself. Genetic testing later showed that I do indeed have Usher syndrome type 2 (USH2a). It was awful though, having to tell my parents that the hearing loss was in fact genetic (previously thought it was due to an infection) and that I am also going blind now. I know they did blame themselves for awhile but I'm hoping that with me being open and honest with others about it, it will show them I will be just fine. I came across Molly Watt during my first Google search on Usher Syndrome and kept thinking wow, fair play to her for all that she was achieving and not letting it hold her back. I really admired this girl and I still do!! I also came across Mark Dunning and the Usher Coalition, Megan Kennedy and many others, and the positivity and faith they had but yet being totally honest with how hard it can be was admirable. They all gave me the strength to believe that I can still achieve things in life despite it getting harder to do so. After a year and half of coming to terms with the diagnosis, I realised I didn't want to hide it anymore. I did hide my hearing impairment and I had left it to others to guess that I was so. But hiding going blind... no, that would be so draining and completely unnecessary. So I put up on Facebook the link to my fundraising page where I explained briefly what I had and how it was affecting me. It really worked out well as I had a lots of people talking about it and it really raised the profile of Usher Syndrome in my area which I'm delighted with.. Also by raising awareness of the condition I was hoping to get support and understanding in return, and that is happening. The amount of support I got was overwhelming! There is still some way to go though with raising awareness and making others understand how tough it is. But sure it's only the start of my journey with Usher and I intend to make it a posiitve one even if it does get a bit bumpy along the way.