I was so excited about 2020, it was set to be another full year, lots of exciting projects, lots of learning, lots of educating, lots of travel, a new nephew and my own flat. 

Instead it’s been a year of cancelled travel, a bit of furlough, lots of remote working and learning, two nephews and here’s hoping that new flat happens too!

I still learnt a lot, observed a lot and looked to solve some covid related challenges for those around me.

Before Covid hit I had again been nominated for a couple of awards this year, I never win anything but it’s great to be recognised for the work I do in trying to make an overall difference to others.

On the whole I have worked remotely, which is much easier for me.  However I have missed seeing my work colleagues scattered all over the country and world.  I have missed having to be organised, timing trains, organising accomodation, walking in the rain with guidedog Bella , laden with backpack full of all sorts including dog food!  Feeling tired, weary.  The stress of airports and air travel, I've realised as much as it causes me anxiety I do it and I miss it, infact I have missed the daily challenges of being me!

Today’s blog is very much about my thoughts on how Covid 19 has impacted on us all. 

I wanted to talk about five things I live with every day since my Usher Syndrome diagnosis at 12 years old: 

Isolation
Stress
Anxiety
Uncertainty
Challenge
Sound familiar?

I think people like myself had a head start on this resulting in us being in a position to support others.

I have, in a strange way drawn strength from this in the belief that now majorities are experiencing what is often my life they will, when the struggles of Covid die down, empathise more with those who live with challenges every day!

When I look back to March and the fear of that first lockdown I recall using skills I have developed because of Usher Syndrome to help others, be more accessible via technology. 

Of course I was not the only person doing this but being an early adopter of assistive technology and social media for learning and socialising it was great to see all generations wanting to embrace what is possible rather than what is not, an ethos my parents have drummed into me over the years.

I spent several days on and off talking my 81 year old Grandad through how to use FaceTime groups and Zoom, he found it all very confusing and stressful but he also showed determination to work it out so he was not so isolated.  Living on his own 200 miles away me and my parents were worried about his mental health.  I was so proud of grumpy old Grandad’s determination, just shows you’re never too old to learn new things! 

I recall the fear and anxiety of others scared to leave their houses, yes, I’ve been there too.  When I was just 14, I was registered blind and fearful of leaving the house.  As a deaf person I did not feel overly confident out on my own and as a result tended to have a small circle of friends and if out would invariably be with one of them.  However, going from being deaf to deafblind at such an early age I learnt an invaluable lesson, true friends are hard to find!

Matched with my first Guidedog Unis at 16 I was able to go out but my fear of the outside world not being able to see or hear particularly well only fuelled my isolation and as a result of Usher Syndrome, deaf blindness I fell into depression.  I imagine many have felt like this since ‘Social Distancing” became a thing.

My whole world and dreams fell apart.  The regular inference from professionals that I would make little of my life allowed me to feel stressed and anxious about the future and it took a long time for me to realise that yes my future may well be uncertain but I will be the judge as to how far I can go.

Challenge is all I know, I am very aware that in many things I do I must strategise, I must find my path and that dwelling on the negatives of the past is destructive and wasteful of my energy which only holds me back.

The many disappointments I experienced through senior school education and further education were painful and unnecessary, but they have taught me valuable lessons. 

Irrespective of what the so-called professionals have said I am very capable and here I am.

I cannot say I have escaped Covid without anxieties.  Social distancing remains impossible for me and my guidedog Bella. 

There have been terrible stories in the news about those who show little or no empathy for those of us who cannot see or hear properly.  It is totally understandable to not want strangers within 2 meters but surely with common sense the sighted could avoid this happening.  It’s a double edged sword for the deafblind, we also have to deal with the dreaded face masks, most of which deny us access to communication, why not use accessible face coverings, available here: https://shop.molly-watt-trust.org 

Perhaps take the challenge, walk around outside, near the public in the dark with your eyes closed and ears blocked, it’s fair to say you might well struggle with what is being asked and might consider moving aside next time you see somebody struggling, in the interest of us all being covid safe.

On the whole I have been ok throughout this scary time but I certainly now have some anxieties about when some sort of normality returns, but I know with Bella at my side I will overcome these things and hopefully more exciting projects will come my way, more travel, more learning, more educating perhaps not more nephews or nieces just yet but here’s hoping moving to my new flat actually happens!

2020 we are done with you, here's hoping 2021 is a big improvement for us all. 

I had wanted to challenge myself for The Molly Watt Trust for some time.

For the 4 years since setting up I have kept busy with Keynote Presentations for the Charity raising awareness of my challenges and those of so many others deal with on a daily basis.

I tackle issues like communication, isolation, inclusion, bullying, accessibility, mobility, depression, anxiety and most importantly coping strategies.

I am not an expert but I live with and have experienced each of the above and I know awareness of need is key.

I wasn't even aware what a Skydive was until it was suggested to me and I researched it and then I was definitely up for it.

I was happy Claire wanted to do it with me. 

Claire had already challenged herself for our charity doing Tough Mudder last year so my turn with the expert.

The day arrived and I was not nervous at all, just excited.  It was a beautiful day with the slight risk of rain so fingers were crossed.

I was so relaxed we stopped for a bite to eat on the way to the surprise of my parents

On arriving at the airfield we were met by Claire and her family and Tina a friend I knew through Facebook came along to support us which was great.

After a short but thorough briefing we got ourselves into our suits, Claire was nervous!

I felt adrenalised and couldn't wait, I surprised myself but thought I'd be nervous once on the small aeroplane.

During the briefing we mentioned Usher Syndrome and that Claire and I would not be wearing our hearing aids, my doctor had recommended no hearing aids for the jump, so we would need an alternate way of communicating.

This was not a problem at all and a simple tapping system was suggested and what was really good was that the two guys Claire and I would jump with were really patient and keen to make sure we felt comfortable with being touched.

Just simple taps on the arms or sides and for me I was happy to have my head moved gently so I could at least try to see in the air - I would fully recommend the team at Sibson Airfield in Peterborough. 

The small plane was quite noisy, Claire and I struggled to communicate with each other without our hearing aids, we made do with a little lipreading and the odd tap here and there, Claire was nervous, I had thought I'd be nervous once up in the air but I wasn't!

Even as Ralph and I wriggled on our bottoms to the opening in the plane, the door opened and I sat on the edge waiting to go, I was in awe of the sight - yes I'm blind but I could see blue, lots of blue and floaty white clouds as I scanned all around me and then I was out, WOW, I felt exhilarated and free, I knew there was a skydiver close taking pictures but as much as I scanned I couldn't see him and although I knew Claire was now behind me somewhere I couldn't see her either even though Ralph tried to point her out.

I felt free as a bird, I was 13,000 feet up and completely weightless. My daily challenges a million miles away.  I wasn't going to fall over, walk into anybody, I didn't have to concentrate on listening for 7/8 minutes I didn't have a worry in the world it was just the most amazing experience.

 made it fun, we flipped and somersaulted around, I loved every moment, even our landing which for me was on my bottom on top of Ralph!

Once I'd landed I looked for Claire, Ralph pointed her out and I was so happy that I got to see her perfect landing on her feet.

It was actually quite an emotional end as Claire had been so nervous but she had done it and loved it too.

Claire and I met through Usher Syndrome and though we live far apart thanks to setting up The Molly Watt Trust and social media we are friends who understand each other and it was fantastic to share this challenge with her.

I will never forget this challenge it was a truly memorable event Friday 26 June 2015   - thank you to all who supported us.

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.