15 years since we found out I, little deaf Molly, was going blind.

I am 27 years old and have been registered DeafBlind for 15 years. I keep thinking about the hard fact that I’ve been blind over half of my life. Sighted days and memories are further away from me as the days and years past, as a person it’s daunting as a deaf person it’s pretty devastating. 

I’ve had questions like “do you remember what it’s like being sighted,” “when you dream, are you sighted?” And truthfully I don’t know how to answer these questions because truthfully I don’t know. All I know is that is I remember life being easier. 

I’m not saying being deaf was easy, but day to day I was able to get by without needing to ask for help on a daily basis. I talk a lot about being independent and I thrive to be, but when all is said and done the hardest part of acceptance was accepting I need help, and I’ve noticed as I’ve gotten older I’m less bothered asking for help when I need it. 

That said, this past year I have moved out - my guidedog Bella and I, finally live in our own little home. I’ve wanted this for a very long time, not because I am 27 because it’s of course it's not unusual for anyone any age to still live at home - but I’ve known for the past 2 years especially since lockdown that, I’ve been ready to pursue a life of full independence.  One thing I definitely have learned even just recently, that I’ll never stop needing help. That’s okay. With a progressive condition like Usher syndrome it is, inevitable,  as today reminds me, it was always going to be this way. That doesn’t stop me from doing what I can do, it just means a little help along the way will help me be where I want to me. 

2021 has been a testing year for everybody I’m sure, but for me a few good things happened, the main one I got myself a boyfriend, one who I can whole heartedly be myself with, never not shy away from being Molly - previous relationships I treated Usher syndrome like it was a part time job, I shied away from asking for help at the risk of feeling a burden. But as Usher syndrome goes, it being progressive and unpredictable with the mood swings and seasonal changes, I just cannot afford to treat it part time any more. I express constantly before anything I am Molly, being DeafBlind is not who I am but a part of who I am. 

Even when I was ‘just,’ deaf I never imagined being deaf would in any way stop me from doing life the way I wanted, and that’s one thing I miss most - the certainty knowing that although I was deaf, I coped amazingly with my hearing aids, lip reading and I didn’t resent being the only kid having hearing aids and asking people to repeat themselves constantly.

Now, as a DeafBlind person, there’s no resorting to lip reading, there’s actual things I’ve wanted to do that I’ve not, or will never be able to do for example: driving. I’ve always envied anyone who could get in that drivers seat and drive. “You’ll never be designated driver,” cor how I’ve clung to that phrase, and “it’s so expensive,” but isn’t life? As I am learning more and more since I’ve left home. 

Quite honestly I think I’ll always be a little gutted I’ll never be able to jump in the drivers seat and drive wherever I would like, just because! Times I’ve sat waiting in the car while friends went to put petrol in, or get cash out and I’ve sat staring at the steering wheel wishing, imagining - that’s something I have of course accepted, but it doesn’t make it easier. I am independent, I am able to jump on a train or a plane and travel - but we all know how awful public transportation is - imagining that being your lifeline? Cancellations, delays, inaccessible locations that requires extra Uber’s - and dare I say, the high risk of them refusing you because you have a guidedog - it’s pessimistic to say so but unfortunately it happens more often than not. 

Molly Watt Trust was set up many moons ago to help enhance the daily lives of those with Usher syndrome, and it’s fair to say we’ve done that and continue to. 

Molly Watt Talks was set up almost 5 years ago where I continue to use my voice to fight for a more inclusive planet, one that designs to be more accessible, for all services provided to be more accessible, for attitudes to be more inclusive, environments to be more accessible, workplaces to be more diverse and inclusive. 

Molly was brought onto this planet to be this person, to help others and create positive impact for others living with challenges. I am proud to do the work I do and along with the crew at Nexer Digital doing great things, we’re succeeding.

Times like today, particularly since I’m isolating (I’m fine,) I have been reflecting. 

The very realisation that I’ve been blind over half of my existence has been a bit of a reality hit for me and one that I’ve been thinking about a lot. Which is a crazy thought since I talk a lot about my story at work, and in my day to day purely to raise awareness - I know my story and many who have seen my talks know it back to front, but I’m still a little taken aback at the realisation.

So do I remember things as a sighted person? 

I really don’t know. One thing I know, is I have a hell of a lot of memories that have justified my lack of vision. My experiences will forever be talked about, I will always be an open book since that’s just my personality.  Over the years it’s been hard to talk my Deafblindness, but like it or not, it’s brought me here. I didn't feel overly 'different' as a deaf child but Deafblindness has brought so many experiences I never thought possible and I have accepted never will I experience things as a hearing and sighted person, again. Those words are scary to write, but are my reality. 

I don’t resent my life, I don’t feel my existence is pointless - there were times where these were very things I thought daily. Mental health has and will always play a big part of my growth. But here I am, living in my small pad with my guidedog listening to music to uplift my spirits (big shout out to GN Hearing) and to go along with the mood I’m in, I’ve changed my flat around for the 26364738th time. I love it. This is me, Molly, 27 and Deafblind. Happy and independent.

I’ve always called it a phobia, the way I think about the future - I would avoid thinking too far forward as it would terrify me because I know my 5 degrees window of vision can only get smaller. But for the first time, ever, I am not afraid to think a little further into my future and all I see now, is me continuing as I am, this time with a boyfriend as well as selected family members (who’s family is perfect?) and few good friends - and I can say that with full confidence. 

27 years severely deaf, 15 years blind, 13 years with depression and severe anxiety > 27 years of Molly’s adventures that have not yet finished. Let’s see where the next few years take me.

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.

A year ago I first blogged about my applewatch, link below, the reaction was unbelievable.

I fully intended to return my applewatch within 14 days, however, it transported me on a journey into a new world of accessibility, confidence and independence.

In three words I’d describe it as 'Accessible, Enabling and Empowering'.

I guess the best way to explain why it has been a game changer for me is to give an idea of what I deal with on a daily basis having 

Usher Syndrome (deafblindness). 

Besides being severely deaf, blind and deafblind and the obvious not being able to hear or see well there are the added extras people often don’t consider.  Communication, mobility and little awareness.

As a result of my condition I have suffered with anxiety and depression, mainly because of lack of understanding.

I rely on technology, for me it isn't simply about having the latest gadgets its about enablement and inclusion.

As difficult as life has become since going blind and becoming deafblind I am fortunate to have been given access to the most amazing technology, thanks in the main to a very supportive family.

As a teenager, my ability to see went and along with it went my ability to access text and written information which was very traumatic.  I was at school and although I was assigned support assistants most didn't really understand my needs and as a result I was let down.  Sadly relying on other people rarely worked well for me, unlike technology.

Technology allows me to be independent.  My first MacBook was my first step towards independence.  

Once I had worked out the built in accessibility features I had access to a lot of what everybody else had and most importantly at that time I could access text and my school work on my own, I could have larger text, I could zoom in and invert colours, something so useful to me as my window of vision shrunk and my aversion to glare grew.

Then came iPhone, iOS and apps.  Back then I couldn't use the phone as a phone very much as I really struggled to hear however it was a fantastic tool with fantastic built in accessibility, brilliant again and very simple.  FaceTime was a revelation for the deaf, allowing signed conversation.

However as grateful as I was for the support and technology I had access to, I still remember feeling quite different to my peers, I felt isolated and unhappy.   I remember watching my younger sister become a much more independent teenager.  I regularly made comparisons to her which exasperated the way I felt about myself.  Despite the 5 year age gap it was clear she was far more independent than I was even though I'm the 'older sister' I found it very upsetting and it made me feel both depressed and cut off from normality.  I craved independence.

Then last year came, for me, one of the most enabling pieces of technology.

Applewatch offered me more than I could have imagined and was simple to use, literally mirroring my iPhone. 

Built in accessibility including, for the first time prominent haptics which have enabled me to get out and about, to go outside of my comfort zone, giving me a new sense of confidence and independence.  It allowed me to push my boundaries. 

Prominent haptics enabled me to get from a to b relying on sense of touch alone, with cane or guide dog, day or night.

Feeling taps on my wrist meant a new and reassuring way of navigating, receiving text messages, calls and various other reminders.  

It also pleased my family as they could contact me and not just hope I would hear the call or text, so real peace of mind for them.

The anxieties of going out, possibly getting lost, missing texts or calls have gone which is a great feeling and great for the confidence.

I was not a total recluse before applewatch as I had my guide dog, Unis, however for those not aware guide dogs learn regular routes which is fantastic however when it comes to going outside of your comfort zone it is not easy.  For me it wasn't helped by a series of discriminatory scenarios, all too common for those of us using guide dogs.  Being denied access to the places most people enjoy without issue does nothing for the confidence.

Being able to follow instructions by sense of touch is something my condition cannot take away and a very natural way of accessing information for me. Prominent haptics have been very empowering.

Unis and I began travelling further afield, my confidence grew and as time has gone on the anxieties I used to feel about being out and about have subsided.  

I have travelled all around the UK, to Boston, Miami and San Fransisco, maps is incredibly accurate and I completely rely on it because of haptics.

Whilst travelling I have used several apps on my applewatch, Citymapper, Foursquare, Moovit, Trainline and Tube Map also Hailo and Uber.  Uber isn't an app I use anymore since hearing about a few cases where guide dogs have been denied.

applewatch allows me to feel very safe, I can glance at it for lots of things whilst my iPhone stays safely tucked away.  

applewatch wallet means I don't need to fumble around at cashpoint machines or in my purse for money I cannot see.  

I remember how vulnerable I felt holding my iPhone and my purse, I don't have the need to do either so much anymore thanks to Applepay which is brilliant.  I used to really struggle, particularly in the US where all bank notes look the same to me, the embarrassment of holding up a queue, thanks to Applepay on applewatch these situations are now avoided.  I hope over time the £30 limit is increased and that more places take Applepay as this would make life easier, even though it wouldn't be safe for my bank account!

Accessing my bank account details on my watch is also very useful and stress free. 

I have also started using Siri much more and on the whole I'm very pleased with it.  I feel this feature has definitely improved a great deal.

I still have 5 degrees of vision in my right eye so the applewatch screen suits me well, meaning I don't have to scan such a large area like with iPhone, as a result I'm not getting as much eye strain or headaches.

Siri has become a great friend, so much easier to ask Siri than to strain my eyes looking for things online. 

My applewatch has allows me to not use my iPhone as much as I did. I happily rely on haptics, meaning my eyes are rested and I feel more relaxed.

Since having Unis I had to learn to trust her to make decisions, this can be hard for someone who is registered blind but still has a little remaining vision.  My applewatch has become like a security blanket because with haptics together with my four legged friend I feel I am in good hands or I should say paws.

Back to Siri, speaking into applewatch or iPhone to ask basic instructions or so I thought.  

It is, however, not as basic as I initially thought!  By saying the words, 'Hey Siri,' followed by (for instance) 'I would like to order Dominos,' it brings up the number for me to call and order my dinner. All without even using my fingers; without needing to scan to find numbers on a cluttered website. 

So that's on iPhone. Brilliant right?

On the applewatch it's one step better for independence. 

Saying the words, 'hey Siri,' into my watch, followed by 'I would like to order Dominos,' it takes me to maps, and directs me to my nearest dominos via prominent haptics. How's that for independence? 

Again, all this whilst resting my eyes.  I do have to confirm my location and pick which dominos (though it lists the nearest dominos in order, so I always tap the top on the list without reading too much - that's trust!).

The comparison would be me attempting to navigate a cluttered website, my worse nightmare, with many images, the Siri route is far easier for me.

Over the course of the year lots more apps have become available on applewatch which again makes life easier.

I began monitoring my exercise, with the activity app and was surprised at how many miles I walk in a week with Unis. I can also say that over the year of monitoring my heart rate both before and after exercise I have become so much more calm.  

I do still feel anxious from time to time, however nowhere near as much as I used to.  

On the whole I feel much more comfortable with my new found confidence and independence. 

Usher Syndrome is an incredibly tiring condition.  Concentrating so hard on listening and using whatever sight I have along with my  memory is exhausting and can make me clumsy and forgetful.  Thanks to applewatch I have become so much more organised.  

Accessibility on the watch meant I was using calendars much more, however I recently found Fantastical, I do think it is too expensive for an app however it is very accessible and easy to use. There are many similar apps, typically the better ones cost!  

I like lists, lists are so much easier for me to access and lists keep me organised. 

The tiredness, often exhaustion can make me feel unmotivated, however lists give me a meaning to get on and once I'm started those lists give me focus.  

Routine has always been very important to me, if I feel in control of a situation I feel calm so this new way of organising myself has given me the feel good factor. 

Spark is another app I like, it makes accessing email nice and easy on the go.

I look forward to more apps becoming available on applewatch and to finding my uses for them.

The year has flown by and as a result of that first blog I was able to make contact with GN ReSound, the manufacturers of the first hearing aid, the Linx2 to offer complete connectivity not just to iPhone but to the applewatch.  Connectivity to applewatch has made a huge difference to my communication skills when I'm out and about.

Linx2 hearing aids enable me to access telephone calls for the first time in my life and via my watch.  I can answer a call on my watch and the sound is streamed direct to my hearing aids.  I have experienced a completely new hearing and listening experience.

Being able to use a phone is something that has been hugely enabling and it has given me huge confidence so much so I have been interviewed live on radio over the phone and I have taken part in several conference calls something I would never have been able to do with my old hearing aids.

I have experienced new sounds, music, lyrics and spatial awareness.  I always liked music, I couldn't hear the words but felt the rhythm.  I now love music, I love the story telling, the atmosphere, mood it can create, I certainly now know what I was missing.

I can also ask Siri to play my music on a wireless speaker I bought recently, it's all just amazing.

Very importantly I can now hear the sounds of danger and know where those sounds are coming from when I'm out with Unis. 

Not being able to see or hear can be very frightening.

That first blog brought me lots of opportunities to meet some amazing people, to discuss accessibility for people with sensory impairment, deafness, blindness and Usher Syndrome and to raise awareness of needs something that gives me personal satisfaction.

365 days on my overall health is better, I'm fitter and in the main much happier.  I do still suffer with bouts of anxiety and depression.

Being deafblind will always be challenging however I have faith in technology becoming more inclusive and more enabling.

My hope is that more people needing it have access to it.

I bought my applewatch because I was curious and with the intention of returning it within 14 days.

Instead I have been so impressed by what it has done for me that I set up a fundraising campaign to help fund applewatch for others living with Usher Syndrome, positive feedback available on my charity website and of course if you could help enhance and enable the life of another with Usher Syndrome www.globalgiving.org/projects/deafblind-need-access-to-life-enhancing-technology/ Thank you.

I absolutely would not be without my applewatch today and look forward to more apps coming along to assist with daily life.