San Francisco in November was an amazing experience, not just because I got to speak in Silicon Valley to some of the very top people in digital at Qcon I also got to re-visit my friends in the Accessibility Team at Apple Cupertino and I got to learn so much more.
I did a short informal talk about how and what accessibility features I use to some of the team, some I have met before and to a few new faces, we also discussed the new apple accessibility website.
I was able to speak about features I like, things I don’t and to pass on some great ideas from those around me, in the hope we can all do our bit to make things even better not just for the Usher Syndrome community but for everybody. If it works for minority groups it will work for the majority.
We then had a great questions and answers session. I love this part of my work, the more curious people are the better the understanding of need and the better result for the end user.
Apple products have enabled me to do so much so far. I am proud to be a small voice that gets listened to and am very grateful of the time spent with the team in Cupertino.
I was delighted to speak in great detail about the importance of ‘iPhone ready’ hearing aids and what that can mean to the deafblind, deaf, hearing impaired, hard of hearing - whatever term used, this connectivity is fantastic.
Forty four different types of hearing aid now ‘work’ with iPhone which is awesome. The one question I didn’t ask and which I wish I had is how many of the forty four are also ‘Applewatch ready’ as that really is the icing on the cake for the deafblind, with it’s prominent haptic abilities (vibration alerts on the wrist) and what for me make life a little safer and are very reassuring. I love the fact my Linx2 have direct connectivity to all of my apple products including applewatch.
This whole conversation really got me thinking about how amazing my hearing aids really are having direct that connectivity and what it all means to me.
I think knowing just how much I benefit from these things makes me feel really frustrated for the many people I know who could also benefit as much from my set up / toolkit.
The more I looked at the list of forty four the more annoyed I became.
The main reason being, the number one brand provided by NHS England does not have even one model, yes ‘NOT ONE MODEL’ on that list of forty four meaning millions and millions are missing out not just on best technology but on enablement and inclusion to carry out so much more than these now very outdated and out performed hearing aids.
Neck loops and faffing around are simply not good enough anymore, particularly as incredible assistive technology exists with built in connectivity and has done so for many years now.
Neck loops are fiddly and easily misplaced by the deafblind. Many don’t offer direct connectivity and are anything but inclusive and most have to self fund these extras too, also radio aids to assist with hearing in more challenging situations like meetings, classrooms, offices and the various other places not environmentally friendly for hearing aids, more cost and often to the individual.
Even with these things in place it is often not enough and then comes more expense for Government Services (Access to Work) who will need to fund STTR each and every time to enable accessibility.
How complicated is this system?
An up to date pair of smart hearing aids is the answer potentially saving a fortune.
NHS England need to think about ROI when providing hearing aids. Something even as simple as being able to use a telephone can give so much more in the way of enablement also employment, resulting in less unemployment, less mental health issues and most importantly less isolation.
There is no price for confidence so NHS ENGLAND isn't it time you considered how far technology has come, consider all the things it can do and enable your patients.
It is a fact, confirmed to me by my deafblind trained social worker that all deafblind people should be issued with two pairs of hearing aids and two pairs of reading glasses because of the impact of dual sensory loss and the complete reliance on assistive technologies. This is detailed in my own personal Deafblind Assessment.
Sadly it seems few Health Authorities are aware or do they simply just ‘turn a blind eye or a deaf ear?’ Many in my position do not have two pairs of hearing aids and even worse often have hearing aids that are years old, denying them the opportunities to connect with modern enabling assistive technology, this really is not acceptable.
Perhaps when considering that each and every deafblind hearing aid user should have two pairs of hearing aids, instead provide one pair of modern smart aids enabling an exceptional hearing experience, also enabling locational sounds, access to speech near and far, to telephones, to access not just the sounds to stay safe but to understand them, to hear inside what is happening outside, to adjust and understand environment, also to enable control of hearing aids via apps, all of these things all assist with the challenges of deafblindness. Simply insist the hearing aids are insured.
I mentioned the add ons that dated hearing aids require like neckloops, radio aids. My hearing aids need neither, sound is streamed through the outstanding connectivity from iPhone to hearing aids and my iPhone even acts as a microphone.
I was told some months ago by an audiologist the reason people with deafblindness who choose to have cochlear implants will usually get funding for two at a cost far exceeding that of top of the range hearing aids is to enable locational sounds for safety - shouldn't this be the same for hearing aid users?
Best access to sound for safety reasons should be all, not based on which type of hearing aid required. Safety is safety.
Outside can be a very frightening place when unable see or hear danger and not just for the deafblind person but also a potential danger to others.
I used standard issued NHS hearing aids from 18 months old until I was almost 21years old, I could access sound, I learnt to speak using those hearing aids and benefitted from all visual clues.
I was very typical of a deaf person, I coped ok. However since my Usher Syndrome diagnosis at 12 years old and being registered blind at 14 years old I felt more deaf, I struggled, particularly with tiredness. Back then I didn't really know why. I was told ‘Usher Syndrome is exhausting!’.
Today it is obvious, I could no longer lipread very well or benefit from facial gesture, from body language or from the many visual clues deaf people use. I had to completely rely on my hearing aids and they just were not good enough.
Sadly there are many struggling along just like I did but what makes it even worse is they are now much more aware of what ‘Smart hearing aids” can offer they just cannot access them!
It is time for NHS England to not just be aware of the everyday challenges to those living with deafblindness, the real impact blindness has on somebody already deaf, how isolating a condition it is then it becomes clear to see that each person should have access to the very best in hearing aid technology.
Helen Keller’s quote from all those years ago ‘Blindness separates people from things, deafness separates from people’ is very true, however best technology can now not just ease isolation but enable inclusion.
I feel very privileged to have the very best in hearing aid technology, it enables me to be confident in my work. I also feel very passionate that others like myself should also have access to the best.
My smart hearing aids are more than just hearing aids they are literally my ‘Linx2Life’.
Smart hearing aids and apple products are accessibility tools for people like myself, they are not flashy gadgets they are essential for the everyday challenges faced.
I'd like this post to reach Goverment, to be read by NHS England, Access to Work, Social Workers working with the deafblind, Audiologists with deafblind patients, Occupational Therapists working with the deafblind and to anybody else I have missed in the care sector.
We have to make life inclusive.
To quickly introduce myself, am Colin and I have Usher Syndrome type 3, the rarest of the Usher types.
I recently received a letter to collect a package from the post office, pretty handy for me as its right beside the train station and I was on my way to Glasgow .
I picked up the parcel and signed for it or should I say the postmaster did, very kind of him as he had spotted Jason my guide dog .
I was very inquisitive as to what could be in that box and was wishing for the train to hurry up so I could open my parcel.
The train approached and I was on my way another two hour journey to Glasgow, however, this time it was going to be a very exciting journey that would fly by!
As I opened the box I realised it was an applewatch.
I had applied to The Molly Watt Trust for an applewatch after reading about their current project https://www.globalgiving.org/projects/deafblind-need-access-to-life-enhancing-technology/ which came about as a result of Molly's outstanding blog showing just how enabling the watch can be to people with Usher Syndrome.
I am delighted to have received an applewatch from This project, I had admired the watch in my local Apple Store on numerous occasions after reading Molly's blog but couldn't afford to buy one.
My first impressions, very smart in black and very very stylish.
Fortunately I had my battery pack on me so figured out how to charge the watch with the magnet on the back of the watch - very clever and simple, I was impressed already.
I switched on and paired it with my iPhone very very quickly by following the simple steps and scanning my watch with my phone.
I then went on a magical journey sussing out the basics of the applewatch.
Apple products are brilliant, particularly their accessibility features, but are very expensive.
As I began to play and find out more and paired my Apps I realised not all apps swapped over from my phone as not all are applewatch compatible, hopefully more and more will be going forward, but I'm still very impressed.
I was struggling with the concept of how an earth can I zoom in but I am getting to grips with the zoom feature.
I was also excited to pair it with my Phonak ComPilot today so I can answer calls on my applewatch and hear audible apps via the watch rather than just my iPhone to my hearing aids.
The first day I found it a minefield of new and exciting features but very similar to the iPhone in many ways but I seriously can't wait to find out more about this incredibly useful, deafblind friendly piece of kit. Here's to day 2
Day 2 was very interesting as I found out I could change the clock face so for now it's Mickey Mouse. I love the way you can change the style for every occasion .
Also looking at the strap yet again you can tell someone has spent a lot of time thinking of a different solution to hide the strap by tucking it behind, nice touch .
Yesterday's mission was to pair my Bluetooth hearing aids to my Phonak compilation neck loop this I did with a varying degree of success and drained the battery quickly as searching for Bluetooth devices generally does. The end result was it works on music through my hearing aids but not on the phone perhaps I've got a setting wrong along the line.
Also playing with the applephone last night I realised all the watch settings are on the iPhone watch app so today I will dig deeper.
Overall view for day 2 frustrated about hearing aid connection to applewatch but sure there must be a way to overcome this, on the plus side clarity is very very good.
I cannot get over how stylish it actually is and I need to find out so much more.
iPhone is not rocket science but a form of sequences just like all Apple products I just need to get used to where everything is.
Yesterday I thought I made huge progress as I set up a route and followed it to the letter.
I set it up on maps on my iPhone then experienced the taps on the wrist to indicate right or left sounds like an indicator on the car, this is brilliant.
I also found loads more apps like a money converter calculator speedometer also city tours very handy on a city break. I even managed to put voiceover on and put my screen lock on at the same time also my screen locked out which threw me out a bit! I got a friend to google this and soon put it right.
I got somebody to google how to sort it out and sorted it out on my iPhone, it's easy just go to the App.
I can honestly say like all Apple products the more its used the better it is .
I'm still learning and loving my new applewatch.
I find the Taptic feature on maps a godsend, being deafblind getting lost is easy, however, so far maps have been brilliant I'm getting from a to be with ease and accuracy.
I also like the gimmicks like charging the applewatch sideways and how it turns in to a digital clock, very nice touch.
Also been playing with lots of accessible new apps, the only problem, irritation is trying to get my Phonak hearing aids and neck loop to stream from my applewatch!
I notice Molly Watt uses ReSound Linx2 hearing aids which have full connectivity to all apple products so hopefully there is a way with Phonak, fingers crossed, I will keep tinkering.
I recently read a piece virtually comparing hearing aids with earBuds / EarPods and hearing aids with glasses!
I read the piece several times and still thought it strange. I'm 21 years old and have worn hearing aids since 18 months old. Even in my time hearing aids have come a long way, in fact with this comparison to earbuds / EarPods the look appears to have come full circle however the technical ability has improved tenfold.
I can remember being shown a picture of a friend wearing hearing aids probably 30 years ago. A big bulky box worn on the chest with wires to the ears, I felt so lucky to not have those but the hearing aids that sit on my ears and attached to ear moulds.
My issue from about 3 or 4 was that I wanted coloured hearing aids not the skin coloured ones that old people wore in fact up until I was about 10 or 11 I insisted that both hearing aids and ear moulds were pimped up in bright colours, being young and female I wanted to make my hearing aids look cool, trendy and fashionable, something to be proud of, just like being deaf.
Back then it was all about the look rather than what the hearing aid was actually doing for me.
So I disagree that hearing aids couldn't be made to look fashionable, even then, yes more limitations than glasses but they could be made to look how I wanted them to.
For me the only difference was that wearing hearing aids was more rare at school than wearing glasses.
In the early days I wore a radio aid in as trendy a bumbag as possible, I had just about every colour, shape and size you could think of thinking back my friends thought it quite cool, the wires I hated that attached to my hearing aid via a special connector (a shoe) made it look as if I had and was listening to what was then called an MP3 player, back then they too had wires.
I hated the wired connection but my friends thought it quite cool! Thankfully as time went on I was delighted those horrible wires disappeared and wireless radio aids became available.
The fact hearing aids have gotten smaller and more discreet is a bonus and I no longer wear brightly coloured ones the most important thing is that my hearing aids now allow me to hear as best I can based on my level of hearing loss and in as many situations as possible and it is this assistive technology that costs.
The hearing aids I wear today, Linx2 are tiny and along with the amazing access to sound and connectivity they give me they do allow me to stream music direct, however thankfully that is just a tiny part of their capabilities as being deafblind my need is far greater.
I read "Today's hearing aids are overpriced and unimpressive".
I totally disagree I was born deaf and registered deafblind with Usher Syndrome at 14 years old and I've never been so impressed in my life, the bigger issue is making this amazing and enabling assistive technology available to more.
The best technology will always come at a price and for people like myself be a necessity in allowing accessibility to the world that most take for granted.
My Linx2 hearing aids pair perfectly with my apple products and allow bluetooth connectivity to all sorts of things, they enable me to do so much more than listen to music, they are as I've said before "Life Changers"
Small and wireless is fantastic but earbuds / EarPods my Linx2 are definitely not!
I was recently talking about cochlear implant and was told the reason those of ANY age with Usher Syndrome (deafblind) that are profoundly deaf and wanting cochlear implant and who pass the NHS assessment will qualify for bilateral implants, however for those just deaf only children are considered for bilateral implants, adults would only get funding for one.
The deafblind are always considered for bilateral implants for the following reasons:
Better/improved speech perception
This clearly and correctly indicates differing need.
However I am horrified that the same need is not identified for hearing aid users.
The effect of blindness on somebody with any level of deafness is profound and yet to date nothing different is considered as extra assistance particularly as the ability to see danger diminishes.
As a hearing aid user who went from perfect vision to registered blind within two years I coped with my NHS hearing aids, however, I was almost run over twice, had it not been for my guide dog I would not be here today as it was she who alerted me to a lorry reversing from my left side on one occasion and secondly to a car that was so quiet I couldn't see or hear it as it appeared out of nowhere.
to say my confidence was shattered was an understatement and I could not leave the house independently for several months.
I am lucky to have a guide dog, there are so many like me who do not and who are very vulnerable because not only can they not see danger but they cannot hear it either.
Of course if there was nothing else we would have to cope with everything including the danger, however there are far better hearing aids available and I want to know why the powers that be do not consider that hearing aid users also need:
Improved speech perception
No different to those with Usher Syndrome opting for Cochlear Implants.
I used NHS funded hearing aids since 18 months old, starting with analogue and moving onto digital as they became available and have had lots of different models and they were fine until my sight went.
Being unable to use visual clues made me very vulnerable and more deaf and listening became all the more exhausting, however I am now benefitting from the latest in hearing aid technology.
Around 4 months ago I was fitted with ReSound LiNX² hearing aids which have not only transformed my hearing but have given me “Improved speech perception, I can localise (know where sound is coming from) and I have spatial awareness along with lots of other amazing features which do in a small way compensate for my blindness.
To date I believe these hearing aids are not available on the NHS which means sadly out of reach for lots who really need them.
What is even more sad and totally unfair is that these hearing aids which can not only enhance the life of somebody with Usher Syndrome or save life are a fraction of the cost of bilateral cochlear implants.
If bilateral implants are best for somebody with Usher Syndrome they should have them just like a hearing aid user should have access to the hearing aids that will give them the most.
Sadly for those of us living with Usher Syndrome there are few who specialise in the condition and we find ourselves almost an after thought, isolated by either lack of awareness or ignorance.
We have great audiologists and great ophthalmologists but few who truly understand our challenges or our journey with “make do” care and equipment.
We are a unique group with the ability to get on but we need not just technology but the BEST technology and appropriate support.
I recently read about somebody I know who has Usher Syndrome and had got into a very scary situation.
Having Usher Syndrome this sort of thing is very easily done.
An accident as simple as getting on the wrong bus in the dark, being put off the bus with directions to safety but you didn't understand the directions and finding yourself all alone in the dark bearing in mind you are completely blind in the dark, terrifying.
Being deafblind is often very disorientating at the best of times and lots of us experience dizzy spells or vertigo, often seems part and parcel of the condition and being lost or feeling lost adds to the anxiety lots of us can feel when out and about particularly in unfamiliar areas.
Similar happened to me before I had guide dog Unis and I was petrified, fortunately for me I had my cane, must have looked lost and was helped to a bus stop and onto the correct bus home. To say it knocked my confidence was an understatement, I didn't attempt to go out alone for several months, isolating myself rather than face the possibility of getting lost again.
The day that happened to me I did not have a smartphone or the technology I am lucky enough to enjoy today I just did my best with what I had.
I am pretty confident today and I know that confidence and independence come from incredible technology and of course Guide dog Unis who has saved my life on more than one occasion as back then I struggled to see or hear traffic even with my old hearing aids.
I have blogged about my new hearing aids Linx2 but after four months of this incredible technology along with iPhone and Applewatch I can say my safety and feelings of vulnerability have improved substantially.
Now when I am out and about with Unis I have the ability to change my hearing aid settings to block out certain sounds so that I can not only hear traffic but I can identify the direction of the sound, something I have never ever been able to do so now I see so little I can have trust in my hearing even though I'm deaf and I hear nothing much without hearing aids - get this, "My deaf ears compensate for my dodgy eyes!"
I am now 21 years old and in four months I've learnt so much more about sound than I ever knew.
I hear sounds I've never heard, I've corrected my own speech, things I've said wrongly for years simply because I couldn't hear the sounds properly, I've "overheard" conversations, a really new concept for me, I can speak and hear well in small groups, I hear so much more its hard for me to explain its just quite an "Eyeopener and I'm blind!"
My confidence in my own hearing has improved my vocabulary, yes, even at 21 I'm learning new vocabulary, I'm not mishearing which was often my biggest frustration.
This last week I did something I never thought I'd be capable of doing without help - I took my first ever conference call yes, not Skype, not FaceTime I totally relied on technology to hear and this is how:
The ReSound Linx2 connect to both my iPhone and my apple watch via bluetooth. When the call comes in I can answer via my watch, clear speech goes directly into my ears, no background noise or interference.
I cannot describe my elation at being able to access a three way conversation, to hear clearly two unfamiliar voices and to make plans for an upcoming event.
I'm sure lots of people are thinking it's no big deal but it really is because using a telephone is something most take for granted and yet people with with Usher Syndrome who use hearing aids often cannot and as a result struggle, particularly in the workplace and yet it's possible if only this up to date technology was available to them.
To have these "Smart Aids" (the first to be fully compatible with the applewatch) the watch and an iPhone work out to be very expensive, however when considering what this kit enables a person to do it makes complete sense in my opinion.
I feel very humbled to have access to this technology, it absolutely makes me me.
I am not a tech expert, an expert of Usher Syndrome or anything else for that matter but knowing that this sort of technology exists and what it can do to enhance the lives of those with such challenges it has to be viable.
Speaking about Siri I have noticed it is by far better on my Applewatch than on my iPhone, I'm curious to know if it will improve on iPhone with the new operating system, either way I will continue to use Siri on my watch so I have the security of leaving my phone out of view and safe while I am out and about with Unis.
I'm still a huge fan of taptics but am now finding Siri so useful, when Siri talks to me the sound goes straight into my ears so I hear clearly thanks to these amazing Linx2 hearing aids and if Siri cannot help then there's almost certainly an app that will do so.
It's great to have so much independence via technology that I can access so easily.
I was asked if Siri understands "deaf voices" well, it understands mine is all I can say.
I'm also looking forward to understanding what "native apps" work on the new operating system for Apple watch and just out of curiosity to see if there is any safety element there.
Along with the excitement of so much new assistive technology available comes the frustration of knowing so many people who would benefit won't because they cannot afford it.
There is so much advancement in technology surely funding the right equipment as opposed to the cheapest equipment makes absolute sense.
The main aim of the Molly Watt Trust has always been to raise awareness of Usher Syndrome and we continue to do this in as many ways as we can.
Molly continues to raise awareness with her keynote presentations and motivational speaking as often as she is able and to as many people as she can reach, all different ages in all different walks of life.
Our guest bloggers also raise awareness by sharing their personal experiences which is a huge help.
The smallest bit of awareness can help somebody's daily challenges hugely.
Most of you will be aware of Molly's recent blog about her apple watch which was seen by over 200,000 people in a month, the awareness from this one blog created a very healthy interest in Usher Syndrome and it's many challenges, particularly from the world of technology which is very encouraging moving forward with accessibility.
The blog showed how all sorts of new technology can enhance the lives of people living with the condition.
A most generous offer from GN ReSound UK Ltd to allow her to try their new smart aids, compatible with Apple iPhone but even more exciting and exclusively, at this time, compatible with the new Apple Watch.
Of course experiencing this new technology has been fantastic for her but as important is her feedback and her thoughts relayed to both the company and to other hearing aid users and particularly those with Usher Syndrome.
The result of this is that Molly produced a further and much more detailed blog (My Eyes, my ears, my Apple Watch) which can be viewed at www.mollywatt.com which again pointed out the importance of up to date technology and how it has enhanced her life and continues to do so.
Whilst this is fantastic it also makes it crystal clear that people with Usher Syndrome and hearing aids could hugely benefit from the very best technology just like those who need and rightly get cochlear implants.
Research into new and useful technology is exciting so whilst we wait for science to catch up thankfully there are things that can make a difference to everyday life, the most frustrating part is funding it!
If you can help in any way please contact us.
In the meantime we will continue our work raising awareness and funds as best we can to purchase smaller pieces or equipment to enhance daily life.
I was born with Usher Syndrome in 1960, I'm born Deafblind but it wasn't properly diagnosed until I was 28.
I had hearing aids from age 9, I was clumsy, I was going blind even then and I was told I was slow as I didn't speak very much and I was bullied.
Growing up was very difficult, life was hard from the beginning.
I have never written a blog before but I'm very upset with the media reporting wrongly about usher syndrome making it sound life is fun and easy.
I have fought all my life to explain what Usher Syndrome is for some journalists to get it completely wrong.
I am deaf, I wore hearing aids to access sound for 30 years and as a result I can speak.
My hearing got worse with age and 5 years ago I was lucky to get a cochlear implants.
I am not miraculously cured of deafness I am still deaf I am just able to access sound.
My blindness was with me the day I was born but progressed slowly and I have been registered partially sighted for many years.
Dual sensory loss is not fun, it is hard to live life always needing to explain personal needs, hard enough without the press not researching the condition, getting wrong and making it sound like everybody with usher syndrome is having fun being Deafblind - it is not fun and I find reading nonsense or being told how I should be based on the nonsense these people write, upsetting and demeaning.
If anybody is interested the only thing on my wish list is for people to understand the condition..
Sorry to vent my frustration
Down the loo or in the nettles at the end of the garden: from the age of 3 my top two destinations to hurlmy detested hearing aids.
Painfully shy, diagnosed profoundly deaf and devoid of much speech, I took every opportunity in venting my fury at having to wear such instruments. I mean, have you SEEN those things we had to wear back in the 70s? Worn on a harness with huge wires travelling from chest to ears that shouted ‘Look at me, look at me!’. Not to mention the shocking level and quality of noise that was funneled into my ears.
Of course I have many, many happy memories of early childhood, but those that are sharpest in my mind are those of isolation, confusion and excrutiating shyness.
Nursery: I had absolutely no clue of what was going on most of the time.
Early school: desperately wanting to blend in but oh, the agonising, public shame of having to walk out of the class in front of everybody’s stares for my speech therapy, and then everybody’s questions afterwards. One classmate asking me ‘why was I death’?
My desperation to be a normal part of society was all-consuming and gave me a determination (some would say pigheaded stubbornness) to prove to everybody I was just as good as anybody, and better. With the steady improvement in hearing aids and relentless (and I mean, relentless!) determination of my mum to fight against the system and open up my world, I slowly but steadily started catching up with my contemporaries.
By the time I was in to my second year at a private girls’ school (small class sizes and fewer teachers to remember my needs was, fortunately for me, a huge help), I was academically successful, ending up with 10 O’ Levels and 3 A’ Levels, was in many of the sports teams, played badminton for Surrey and had a decent circle of friends. With long hair to cover my ears and a good speaking voice, nobody would ever know I was deaf.
Now I turn to another memory: this time me at the age of 15, in my bed not being able to sleep. Praying: please God, please God don’t let me go blind. Which is weird because I was not, at this point, suffering any loss is sight as far as I knew, it was that my bedroom seemed darker than usual and I couldn’t pick out things in the room I was sure I could before.
Although I didn’t know it at the time, the slow decay inside my eyes had started. My badminton started suffering. I struggled to see at parties. I couldn’t see the same as my friends in the cinema, I became ‘clumsy’.
But it wasn’t until I was 22 that I had any inkling of what was happening. I was having Sunday lunch with my boyfriend’s family one weekend when I complained about my poor night vision. My boyfriend and his father, who were both doctors, fetched an opthalmoscope, spent ages taking turns peering into my eyes and looking up stuff in their medical books, In the end the words Retinitis Pigmentosa came out, and there it was, my bombshell. Delivered to me post roast pork and apple crumble in a sunny living room in leafy Northamptonshire.
The formal diagnosis when it came whilst sitting opposite Professor Bird at Moorfield’s Eye Hospital, was of course utterly devastating for me and my family. The unbearable unfairness of it, the overwhelming fear of my new future was terrible. Consumed with numbing grief, resentment was at the surface of everything. Why me? I had already beaten a profound hearing loss so why this as well when I need sight so much more than other people?
My parents supported me and loved me, but I knew they felt an enormous sense of guilt about passing on such genes. I didn’t have enough in me to deal with their feelings of guilt and sadness. My parents always fixed stuff, it was frightening to see them and everyone else become powerless.
I was offered no effective, appropriate support for someone of my age and stage of RP. The literature, containing pictures and stories of guide dogs and canes and people twice my age, made me feel ten times worse as I was nowhere near that stage and I threw everything away I soon as it came in the post.
Completely lost, this was the beginning of my new mountain to climb.
‘Down the loo or in the nettles’ is to be continued.