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:
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.
This might not be seen as pushing boundaries for some.......
However, for myself it was like jumping out of an aeroplane!
I have always admired a local photographers work and I see regular updates of his work on Facebook. I noticed that he was looking for models. I got in touch with my best friend (Julie) and said why don't you enquire about it. No harm in asking.......he replied with yes, I'll work with you.
I was so excited for Julie and she asked me to attend with her for moral support....GULP not wanting to let her down after suggesting the idea, i said (meekly) yes ok..........!
Panic stations, I have got to go to a place, I've never been before and be my friends support whilst shaking in my boots at being in unfamiliar territory!!
The next day, I'm feeling really positive and enthusiastic for Julie. I was looking forward to going and seeing how it all happens.
We arranged for the shoot to take place in a few days. I'd already sent a message to the photographer the night before warning him that I was attending with Julie, also that I was hearing and visually impaired, could he make sure I was sat out of harms way. :)
I then got a bright idea (with a bucket load of courage from somewhere) and before I knew it, I'd sent a message to the photographer asking if he'd be interested in including me in the mix! Waaaaaargh what are you thinking woman. :-O
Retreat! Retreat! RETREAT!!
He replied.................yes! (Lynne has now fainted)
The day arrives, the only person that knows, I am included in the photo shoot apart from my friend is my mum. I am dropped off at my friends house and we are both battling with nerves. We set off to the unknown...........
We arrive at our destination, my stomach has dropped out, I've said to Julie, I can already see it's going to be dark in there and I'm going into hell. We go into this very big house and I'm being guided by Julie.
We have a quick chat and acquaint ourselves with our new friends and I choke on my cup of tea, you can't take me anywhere!
The moment has arrived and we are taken to the room where costumes are kept (again it's dark even with the light on) I can't see all the costumes that are being shown to me, so I have to be completely honest and say I can't see a thing, you'll have to help me.
Bearing in mind, I am most definitely a plus size and I'm already dreading trying to squeeze into a costume, I am having to rely on others to say yes or no to outfit and accessories as well as my physique. Hard work is an understatement. :-p
Once dressed, we go to the studio, which is upstairs in an attic room, it's still dark for me until we are actually in front of the lights for the photographs.
We are then photographed individually and together with one outfit change.
Whilst being photographed it was nerve wracking because being in the bright lights, I still couldn't see or hear anyone very well, so I asked to be placed in position and shouted at. :-p
I have to say despite being nervous and feeling foolish (A LOT) we thoroughly enjoyed ourselves and are very glad we went for it. WE MIGHT EVEN CONSIDER GOING BACK!
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.
Ralph 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 believed in us and supported us.
On June 26th 2015 I embarked on a Tandem Skydive with Molly for the Molly Watt Trust.
The weeks leading up to it I tried not to think about what I had agreed to do! It was something I knew I had to do while my sight is still ‘good’, I was excited to do it but tried not to think too much about it for fear of scaring myself silly!
My parents watched videos and showed real concern for me and my safety but I assured them I would be fine!
Then the day before arrived…. I was going to jump out a plane tomorrow what on earth was I doing!
I began shaking and could feel my heart rate increase that day felt so long, I was scared could I do this would I let them down, let myself down, what about my baby girl and my family, what would they all think, was it too much, safe to say I got minimal sleep the night before!
Then the Morning arrived, I kept busy sorting my daughter and guide dog ready for the long day out I wasn’t thinking I was just mechanical getting things done, then my daughter says….Mummy why are you going to jump out of a plane?? Ok its in my mind and I’m now thinking for the best answer, I just say because mummy wants to fly and see the world from a new angle.
Really I was doing this because I wanted the challenge and the experience of a lifetime and most of all to raise money for the Trust I have close to my heart. I don’t know what my sight will be next year or in 5 years so I feel I need to do these crazy things while I can still see to create the visual memories that will last a lifetime.
Also for my daughter to see her mummy float down from the sky that’s got to be an awesome memory for her too right?
Anyway we got in the car, I picked on my hubbys driving a lot… I was venting he knew it was nerves bless him he does have to put up with me sometimes.
The journey went well until we got close then I got fidgety... we arrived, mechanics kicked in again get daughter and guide dog out the car get stuff sorted and we will go find everyone else.
Hubby then said Molly and family are arriving so we wait to greet them and then we all set off towards the skydive building where I find my Parents, my Sister and Grandma and Uncle waiting for us, safe to say I have a lot of support for the day!
Me and molly then head to the reception to check in and sign our lives away, I spot a video playing on the big screen behind the desk and its of someone doing their jump my heart skipped a beat and I felt pale, my sister spots this and is very amused!
Shortly after we went to the briefing room, I had my mother beside me and I was holding her hand, but she was shaking too! The instructor Mark introduced the equipment and the procedures we needed for the jump. He cracked a few jokes making the most of my obvious concern and fear!
Then time to get suited and harnessed up… I find out my guy is the same Mark who had done the briefing so I feel a bit better as felt I knew him a bit now, although he was a joker it helped me lighten up a little, we talked through some more about any barriers we may have due to my restricted vision and the fact I will be deaf for the duration. He was great spoke loud and clear and direct at me and kept signals in front of my face so I could see as best as possible.
We had a few photos then time to go! We walked towards the loud plane… small plane might I add, I climbed the tiny ladder into the plane and Mark climbed in behind me and clipped me to his parachute. Then the plane ran down the grass runway and up we went, the flight up took about 15 minutes but it felt so much longer, I initially felt calm looking out the window looking at the world below not really thinking just sitting, but then at 5000ft the door opened and we felt a rush of cold and wind and a guy jumped out. OMG I wasn’t ready for that he just disappeared like that gone!
That was it, nerves going into overdrive what the have I got myself into? I start shaking like a leaf I can feel my heart pounding and as we got higher I went numb my hands went like pins and needles started clapping my hands together trying to get feeling trying to get something to work to calm myself and psyche myself up for what I was about to do… jump out of this perfectly good plane!
We had already decided Molly would go first she was very up for it and showed no fear only excitement, yeah she’s nuts haha!
So we hit our height of 13000ft and we are go go go… I watch as Molly and her guy wriggle forward to the door I shout good luck but she couldn’t hear me but the meaning was there haha, us trying to communicate was very interesting in that loud plane with 2 “deafies” I think we just managed to lip-read each other!
So Molly’s at the edge and then in a second she’s gone and then my guy starts to push me forward, he said to move my legs forward to which I replied I’m numb I have no use of any of my limbs right now! So he wriggles me forward and then suddenly my feet are over the edge of this tiny plane just like I’m sat beside a lovely pool dipping my feet in but I’m not I’m 13,000ft up in the air strapped to a Stanger and a parachute about to jump, I panic and start trying to breath then I remember to look left to the camera guy and try to smile whilst bricking it inside then we lean forward and then ahhhhh we are falling head first out the plane I just see the ground and clouds above my head then we level out tummy’s to the ground and he signals to me I can put my arms out and we are freefalling through the air it felt exhilarating I feel the rush of air under me pushing me up holding me in that position I look down and see the ground coming closer and then silence as the parachute jolts us up and then I can just absorb what is happening we are now upright the parachute has worked and we are gliding down to earth I look around and take is as much as I can, I say Wow this is beautiful so peaceful and Mark said now you see why we do it, he points out a few land marks and houses with pools and we was over a large lake for quite a while I told him I don’t want to land there, he laughs the tells me to lift my hands and he takes them and lets me hold the handles to the parachute… I’m in control now awesome! He put us over some thermals I could feel it like someone had switched a hair dryer on under us, he pulls on my arm and we go into a spin and turns brilliant but then the force felt so strong to I shout stop as we do a gentle turn to the other side and it feels amazing.
Then we come close to the landing spot I hand him back the reins and he says my supporters can see us now if you want to wave, I couldn’t see but begin to wave he says to scream but I let out the lamest scream ever, I’m just to happy right now to scream, then he says to hold my legs up ready to land so I do and we come in to ground softly and on our feet…AMAZING!
Molly has already landed and comes over for a hug we both have huge grins on our faces and are both still high on adrenaline, it does take us a fair while to mentally come back down to earth after that experience.
We then greet our family’s with huge hugs and smiles and me and Molly jump into the van to take us back to base, we then return our jumpsuits and head to get our certificates. Both of us buzzing wanting to go again, never have I felt so determined that “Usher Syndrome will not stop me from living and doing!”.
We round off our day with all of us heading for something to eat, the discussions around the table were a giggle and I think both our family’s felt immensely proud and they loved hearing our stories, it must be nice for my parents to see this and for me to realise that I can do lots of things with the right attitude.
I won’t let things get in my way.
The guys at Peterborough had not supported two people with Usher Syndrome at the same time before, a first for them and us, they were great but so were Molly and me, we both struggle but we choose to not let deafblindness get in our way.
We are not alone.
Ushers are awesome!
The sun would shine we'd go out to play
Ride our bikes or play on swings
We really could do wonderful things
Run and play, just play all day
Now when the sun comes out to play
I must hide my eyes away
The glare is painful it makes my eyes weep
I hide behind dark glasses as if to sleep
My eyes are open but little can I see
Usher Syndrome, Deafblind is me
Hearing is a challenge but hearing aids fab
Seeing more difficult without Unis my lab
Life is different, challenging and tough
It's all about awareness, there isn't enough
My aim is to educate to make people aware
My Usher Syndrome challenges I'm going to share
If you are interested and would like me to inspire
Invite me to talk, go on I dare you to enquire
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.