I remember thinking 2020 is going to be my year, finally I’m getting somewhere, I’m going places, I had work plans, a diary full of work and travel all round Europe and Scandinavia - many events booked a year in advance, why?  Because clients wanted me!  Yes, I was approached directly.  I cannot express how good that feels.  My hard work, my desire and persistence to make a difference had really begun to pay off my work, my commitment and passion for accessibility, inclusion and positive change noticed for what it is.  The importance of diversity.  Could things really be taking off for me?

I have been self employed for 4 years and my hard work had begun to pay off, things were popping up here and there and with other bits of contracted work, life was heading in the right direction - finally able to save for the first time in years, to move out and be independent. 

The first 2 work trips of the year went according to plan, first to Stockholm and the next to Paris, both went really well and then BANG, COVID-19 struck big time.

Of course I had heard about it but I certainly hadn’t considered the severe impact it would have on everything and everybody.

Lockdown struck leaving us all a little lost. Thankfully I had my work at Sigma IT to keep me going and how important that was, we could continue to work remotely, however then came furlough and along with it routine and structure flew out of the window. 

The nightmare continued:

“You can leave the house once for essential shopping or independent exercise” 

“Masks must be warn at all times”

“Keep 2m distance at all times”

Truth be told I didn’t leave the house, not for a long time. Essential shopping? The thought made me heart race, how could I being deafblind be able to exercise the 2 meter distance rule? Let alone find essential items in a busy shop full of anxious people wearing face coverings: obstructing my ability to ask for assistance!

After a fair few weeks I did build up the strength with the help of my family to go for walks with the dogs from time to time, but even that I did find it tough to keep up.  

Hibernation was something a tad too familiar to me, a bit too easy for me to fall into. I could feel myself falling, I recalled when I first came home from boarding school (for good) all those years ago, all I would do was hibernate - sleep became my best friend! 

My old friend anxiety and his best mate depression swept over me and I just felt defeated, deflated and tired. 

My family and friends allowed me time to reflect and to straighten myself out as best I could and as time went by I did come to terms with the situation. 

This time I was not alone in a world of isolation, the world that many deafblind like myself can live in, in fact more than ever before many had entered our world and they were also struggling.

Three of my closest friends made it their mission to FaceTime regularly, arranging quiz nights and chinwags with a glass (maybe two!!) or wine. This became my routine, became my social interaction and my medicine - seeing familiar faces made my heart warm.  We like so many found a way of following the strict rules of lockdown and socialising.

I became motivated to start the family quizzes as the almost daily calls to my grandad who lives on his own did not feel enough. He has an iPad - the exact iPad I tell everyone I helped set him up on, why not put to good use and keep him in the loop?

Wednesdays became family quiz nights with Grandad, my parents, my sister and I plus my auntie and two of my cousins.  We would join from 3 devices (this household, auntie’s household then grandad’s) to make it a little less confusing for grandad. 

Thursdays became immediate family quiz nights - My parents, sister, brother and girlfriend plus brother and wife (with beautiful nephew of course.) 

We had a routine, that’s when things got a little easier. 

Lockdown eased and we could do a little more, but with precautions. This of course made me very nervous. I struggled with it for a while and again, would avoid it whenever possible!  My friends made the effort to come and sit in my garden or go for walks and get coffee - all at a distance but knowing they could still offer assistance if absolutely needed be, again my nearest and dearest made me feel safe when I couldn’t be sure for myself.

I then braved the train for the first time in several months with Bella, she was keen as ever to dust down her harness and get me back out. We did a short run to Reading where one of my friends lives to see her new flat, she had offered to pick me up and drive me home but I insisted on doing at least one of the trips independently - and I am glad I did.  Bella doesn’t do social distancing but she does safe and Im good with that, we do have to rely on the public realising we can only do what is possible and they must consider we do our best in the most difficult of situations.

Somehow the Molly Watt Trust carried on as best it could with Mum rallying the troops, finding local ladies and gents to come together to make home made accessible face coverings (face masks with a large clear window) whilst we searched for an outlet to buy in bulk.  Those face coverings made life a little more doable for those of us who rely on lipreading, in fact the compulsary wearing of facemasks made so many people much more aware of how much they relied on lipreading and facial gesture even though not knowingly deaf or hard of hearing.

We also continued to work with our friends and supporters, with those at GN Hearing and audiologist Sarah Vokes at Correct Hearing to bring the gift of hearing to two more people living with Usher Syndrome - huge thanks to all involved in making this happen.  Hoping to continue this work into 2021.

Then came another lockdown then Tiers then more tiers... Honestly I am a little lost with it all at this stage. 

All I know is Christmas was strange. My sister gave birth to beautiful baby boy almost 3 months ago and his presence in this household has made life in lockdown/ tiers far more bearable. 

I first became an auntie the day before the first lockdown struck - this was really tough!!

Casper is now 9 months old and an absolutely gorgeous bundle of joy.  It was so hard not being able to meet Casper the first 3 and a half months of his life. 

Living with Noah who is almost 3 months has made me feel almost sadder that we missed those months with Casper, though we were inundated with pictures and video calls, not being able to meet him, to smell him, to cuddle him and listen to his coos in the first few months were precious times, lost. 

Speaking of listening in September of 2020 I began wearing Resound One smart hearing aids that for me was a high point, one of the few, it coincided with me getting to see so much more of Casper and the little man had found his voice.  I got to experience his cooing, gurgling sounds, his raspberry blowing, his giggles, his belly laughs along with his squealing and crying.  I got to play with him with all his noisy toys, boy can toys be noisy!  I didn’t get to appreciate noisy toys when I was little my hearing aids simply weren’t up to it!  I have to say I enjoyed every sound of his, he really is the cutest.

Casper loves a squeaky Hey Duggee toy and loves to watch The Chase, he seems to find the buzzer sound amusing.  So much joy to be had with the gift of hearing, thank you ReSound I’m enjoying the gift of sound more and more.

Back to Christmas: we were thrown into Tier 4 days beforehand meaning the original “three family bubble” wasn't going to happen. To say I was gutted was an understatement. 

Casper and Noah’s first Christmas was something we had all looked forward to - we’d bought matching outfits for the boys and so many presents for them.  Naturally we wanted it to be special but it was not to be!

Christmas was nice but next Christmas will be better!  

So there I was, writing this on 31st Dec 2020, thinking of the many challenges, the sadness, the anxieties, the isolation, the rejections, the fighting back and refusing to be beaten by the monster that is Covid and I've made it - I'm stronger than I thought!

I'd like to see my Grandad soon to see more of Casper and my family members.  

I've also really missed my work colleagues who I really need to thank them for keeping me busy online, always finding the way for us to carry on with our essential work in online design, accessibility, usability and enablement, which over the cause of this pandemic has become even more vital.

I'm hoping 2021 will be kinder to us all, that we can all be a little kinder to each other and that some sort of normality can prevail.

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.