A A A Accessibility A A A A

Molly Watt Trust

Sunday, 23 June 2019 19:32

Whispers in the Dark

Written by  Josh Parker
Rate this item
(10 votes)

It’s never been easy. Having to scan the floor in front of you when walking down the street. Having to pre-plan the route to the nearest toilet in a restaurant. Having to feel your way through an unfamiliar room in the pitch black. Having to hold onto your mate as they stroll through the club. Having to desperately apologise to someone after walking straight into them in the supermarket. Those of you with Retinitis Pigmentosa know exactly how it is. Those of you who don’t might only begin to imagine. What on earth is it like to see in front of you, and to your left, but not in the middle? Is it black? Is it blurry? It’s neither. It’s just not there. I ask you the same question: What is behind your head? Is it black? Is it blurry? No. It’s just not there. This is what it is like living with peripheral vision loss. “Oh, you’ve got vision loss? Have you thought about wearing glasses? Are you wearing contact lenses?”. I can’t blame people for being uneducated on the matter. How many people do you ever bump into with peripheral vision loss? It’s just not a common thing.

The eye is a complex thing. Most people know about the lens, the iris, the pupil and the retina. Maybe you know about the cornea, the macular and the optic nerve too. The majority of those who suffer from some degree of sight loss have a problem with their lens; It just isn’t the right shape. Some people are shortsighted, where they are able to see things close, but not far. Some people are farsighted, where they are able to see things far, but not close. Some people just have a lens that doesn’t allow them to see either. This is all stuff that can be corrected with glasses. Glasses simply alter the way the light rays enter your lens, so that the correct image ends up coming out on the other side. Most of you probably know that the image projected on your retina is actually upside down. It is the brain that ends up inverting this image, so we see things the right way around. It’s amazing what the brain can do. There was an experiment where some guy was asked to wear glasses that turned everything upside down for a few weeks. After just ten days he was able to fully adapt to this upsidedowness, and his brain had actually inverted the image back the right way up. The process of him removing the glasses caused him to start seeing upside down again. It then took another week or so for his brain to adjust back again. Similar things happen to those with sight loss. Someone born completely blind just has no possible comprehension of colour. People say things like “hot is red and cold is blue”, but what the hell does that mean to someone who has never seen a colour in their life? You cannot fully comprehend something you haven’t experienced; it is just a fact of life.

“What did you say?”, “Sorry, what was that?”, “Excuse me, I didn’t quite catch that”. No doubt that these are phrases that deaf people almost feel like they need to have recorded on their phone, so they don’t have to waste their breath repeating them every fifteen seconds during a conversation. Being sat there on a table, watching people throw their opinions about whilst moving your head back and forth trying to lipread everything being said is, let’s put it this way, bloody exhausting. Some people are easy to understand; they have a clear crisp voice and speak in a way that resembles the language that you have grown up understanding. Their lips move in a concise manner and they don’t have any lisps or a strong accent. Personally, I find women a lot easier to understand than men. Their tendency to have higher pitched voices really fills the gaps in my hearing loss. On the other hand, some people just cannot be understood, no matter how hard you try. Whether they have a strong accent, a really quiet voice, lips that barely move, or a massive beard that gets in the way, it is just a constant struggle. I’m sure other deaf people can relate, but is there ever a certain person in your social group or who you work with that you just hope you never have to have a conversation with? It’s not that you dislike them, but it is just the fact that you know it will be a constant struggle to have a one to one conversation with them.

It’s not just the social struggles. Being deaf comes with its other problems. Ever wondered what it is like to be woken up by a vibrating phone under your pillow? Trust me, I’d sooner have an elephant wake me up. Ever had to go into a hotel and work out how you are going to know the fire alarm is going off? Ever felt extremely isolated because your hearing aid stopped working or you had forgotten to put fresh batteries in your wallet? Ever had terrible earache, but needed to make the decision between sticking the hearing aid in and suffering, or pulling it out and not hearing? It does come with its benefits though; Being able to turn your hearing off is a huge bonus in some situations. Kid screaming on the bus. Off. Bloke playing his music too loud next to you on the plane. Off. Annoying conversation that you don’t want to hear. Off. Car alarm going off outside when you’re trying to get some sleep. Off.

What’s worse though? Would you rather be blind or deaf? It is a common question that goes around, especially during philosophical discussions with a bit of alcoholic influence. I love these sorts of discussions. It really takes people to a different level of respect for their senses. Some people would rather be blind because of their love of music and the birds singing in the morning. Some people would rather be deaf, so they would still be able to drive their car and see the stars at night. Whichever you choose, it will no doubt mean a significant part of your life will be diminished, or worse, destroyed completely. Some people don’t have that choice though. Some people must deal with both. Being completely blind and completely deaf at the same time is extremely rare, but those who have some degree of both hearing and sight loss are fighting a battle of two competing senses. Typically, one backs up the other. You may hear stories of blind people with supersonic hearing, or deaf people with eagle-eyed vision, but those with Usher Syndrome and other deafblind disabilities are neither of those. One sense doesn’t help the other. Rather, it makes the other even worse. So I think it is safe to say that you should make the most of the senses you have, as it is something that you might one day wake up without. It is our senses that make us who we are, and without them, we would live in a very bland world. But for those of us who are deafblind, I guess we must make the most of those whispers in the dark. 

Read 1834 times

Pin It
 

Recent Blogs

Virgin Train #Fail

We were truly horrified to hear of Molly's recent expereince at London's Euston Station and it must never happen again:   I travelled from Maidenhead to London Euston to catch a train...

Read more...

Helen diagnosis 'I felt my world fel…

Helen diagnosis 'I felt my world fell apart'

My name is Helen Colson. I’m 29 years old & live in Southport, Merseyside. I was diagnosed with Retinitis Pigmentosa and as I am moderate-severely deaf, Ushers Syndrome last year.  It...

Read more...

Olivia's Usher Life - Last few month…

Olivia's Usher Life - Last few months of emotions

Hello Everyone! Would like to wish you all happy deaf blindness week! I’m so sorry that I haven’t posted in it feels like ages! But I’ve got soooo much to...

Read more...

Where did our journey with Usher Syn…

Where did our journey with Usher Syndrome begin?

Where does our story begin..... Alice (now 16) was born profoundly deaf. In Oct 17 at a routine eye test (Alice has always worn glasses) they picked up an issue...

Read more...

The evolution changing Usher Syndrom…

The evolution changing Usher Syndrome

Usher Syndrome is a strange thing, strangely it is evolving even though it hasn’t changed.  It remains a condition without a cure. There are variations in level of deafness, in level of...

Read more...

Whispers in the Dark

Whispers in the Dark

It’s never been easy. Having to scan the floor in front of you when walking down the street. Having to pre-plan the route to the nearest toilet in a restaurant...

Read more...

GAAD - Not if but how!

GAAD - Not if but how!

Indeed back in the 19th Century it was Helen Keller who stated “DEAFNESS SEPERATES US FROM PEOPLE AND BLINDNESS SEPERATES US FROM THINGS”. Back then she was right, she lived...

Read more...

Equal access to sound for all

Equal access to sound for all

Today is ‘Rare Disease Day -2019’ So I decided on a blog about hearing aid technology that can and does enhance lives.  This http://www.nciua.org.uk/latest-new/ was brought to my attention several weeks ago. ...

Read more...

LiNXQuattro 'LiNX to Everything…

LiNXQuattro 'LiNX to Everything"

I have to admit that as time goes by, wearing high tech smart hearing aids has become just a part of me.  I imagine this must be how natural hearing...

Read more...

#GAAD 2018 - Exclusion to Inclusion

#GAAD 2018 - Exclusion to Inclusion

I wanted to write something for GAAD (Global Accessibility Awareness Day) this year to take into account a lot of the work I have been doing over the last 3...

Read more...

Applewatch is lots of useful things …

Applewatch is lots of useful things but also bossy!

When I peer into the mirror I see my right hazel/green eye.  Traveling downwards and towards the left I can see my nose then my mouth.  Following the nose upwards...

Read more...

Happy Haptics

Happy Haptics

How is it that a few simple vibrations can give you SO VERY MUCH?If you had asked me the same question just a few months ago I would have probably...

Read more...

Counselling - My Rollercoaster of Em…

Counselling - My Rollercoaster of Emotion

I haven’t blogged for a while, but feel this heartfelt blog needs to be written. I had never really considered the sadness, even grieving that happens when somebody you have loved...

Read more...

Applewatch Down Under

Applewatch Down Under

Coming to the end of the school year, I have realised how much I rely on my apple watch. The apple watch has given me so much support that has...

Read more...

Charlotte's Applewatch

Charlotte's Applewatch

I was aged 14 when I was told I had Ushers Syndrome Type 2. I was devastated and my dreams for the future were gone in a single moment. Being...

Read more...

Usher Awareness Weekend and Workshop…

Usher Awareness Weekend and Workshop 2017

Well it finally came, a date in the diary both Lyn and I had been looking forward to for some time, Amy Winehouse on the 15th of September and 16th...

Read more...

My "Blind Date with Ushers

My "Blind Date with Ushers

On Saturday 16 September 2017, Usher Syndrome Awareness Day,  I was very humbled to join in on an accessibility workshop hosted by Molly Watt from Molly Watt Trust and Chris...

Read more...

Applewatch, I won't leave home witho…

Applewatch, I won't leave home without it

Hi Molly Watt Trust I want to thank you for funding my applewatch. I had so much catching up to do through the school summer holidays including  training with my new guide...

Read more...

September's Skydive/ Now November Sk…

September's Skydive/ Now November Skydive

Due to mechanical problems with the aircraft on Sunday 3 September 2017 we have had to re-arrange this fundraiser.  New date for this event iis Sunday 26 November 2017 We are...

Read more...

Maidenhead Charity Ball 2017

Maidenhead Charity Ball 2017

I was fortunate to be introduced to local couple Diane and Laurence Armstrong at a Christmas party in 2016. We quickly struck up conversation about both their's and my charity work. Diane...

Read more...

Applewatch, Cochlear Implant for Ush…

Applewatch, Cochlear Implant for Usher Syndrome type 1

When I first got my applewatch from the molly watt trust I was really excited, being profoundly deaf and registered SSI with usher syndrome type 1.  I hoped the watch...

Read more...

Different, Unique, Priceless

Different, Unique, Priceless

Why don't people see the potential in different or in disabled? It is absolutely down to awareness, understanding and attitude in my opinion. As a little girl my parents made sure I...

Read more...

Emotion and Music to my Ears

Emotion and Music to my Ears

I have had some additional personal challenges recently with the reality that my first trusty and gorgeous guide dog Unis is retiring early and that I will continue my journey...

Read more...

ReSound LiNX² to ReSound LiNX3D - E…

ReSound LiNX² to ReSound LiNX3D - End User Review

For the last two years I have raved about ReSound LiNX² smart hearing aids and rightly so, they literally changed my life. I would be lying if I didn't say "REALLY...

Read more...

Applewatch for kids

Applewatch for kids

I recently received an email enquiry from the Mum of a 9 year old son living with Usher syndrome.   I regularly receive email from others living with the condition I’m...

Read more...

Usher Syndrome Children's Event - Se…

Since my young daughter was diagnosed with Usher syndrome 5 years ago I had never met another child or family living with Usher syndrome here in the UK. I'd been lucky enough...

Read more...

Is the NHS listening? Usher Syndrom…

Is the NHS listening?  Usher Syndrome, when you no longer hear with your eyes!

We met a lovely lady from Northern Ireland at a Molly Watt Trust ‘In it Together’ event in Edinburgh in October 2015, she has been a hearing aid user since...

Read more...

The love of Unis

The love of Unis

Unis came into my life when I was 16 years old.  Looking back I know I did not thoroughly embrace her, I also acknowledge the constant bullying and questioning of...

Read more...

A Visit to ATOS London Offices

A Visit to ATOS London Offices

I recently visited the ATOS London Offices, for an appointment set up by my Mum, Jane. We were there to meet with Dr McKillop to discuss varying issues and negative experiences...

Read more...

Mario's day to day life with Usher S…

Mario's day to day life with Usher Syndrome

My day to day life with Usher Syndrome (Retinitis Pigmentosa) is a constant fluctuation between moments where I can ‘get by’ and moments in which my disability presents real challenges...

Read more...

Disjointed Care or Digital Data?

Disjointed Care or Digital Data?

I was delighted to be invited to meet with Digital.Health London to discuss a variety of things relating to my journey with the NHS and the various services. It certainly got...

Read more...

Bali - Sound Sensations

Bali - Sound Sensations

At the end of my work and networking trip to the other side of the world, Mum and I decided on a a trip to the beautiful island of Bali...

Read more...

Usher Syndrome / Christmas Challenge…

Usher Syndrome / Christmas Challenges

Hello, my name is Josh Parker and I have Usher Syndrome type 3. Most of you reading this probably already have an idea what Usher Syndrome is, so I’ll keep...

Read more...

A toolkit to enable deafblind to acc…

A toolkit to enable deafblind to access the world

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...

Read more...

Singapore Airlines - Never again

Singapore Airlines - Never again

I blogged about my not just poor but disgraceful treatment by Singapore Airline cabin staff on 13 November during my flight, Heathrow to Singapore.  I very unpleasant start to travel...

Read more...

Singapore Airlines a Very Unpleasant…

Singapore Airlines a Very Unpleasant Experience!

13th November, the start of my adventure to the other side of the world.  It had been just two days since Mum and I had come off a plane from San...

Read more...

Deafness makes you more blind

My name is Colin Hetherington and I suffer with Usher Syndrome which is retinitis pigmentosa (blindness) which gives me all sorts of daily troubles from glare tonight blindness, headaches flashing...

Read more...

Facebook - Anti Social Media!

Facebook - Anti Social Media!

Dear Facebook I am a 22 year old who struggles with accessibility. I am registered deafblind, however, I was not born deafblind but deaf.  What that means, to you, is that I...

Read more...

iOS10 Accessibility

iOS10 Accessibility

Dynamic text galore! As we all know Apple products, get fairly regular software updates.  I had read and heard a few things about iOS 10, but was intending on waiting to experience...

Read more...

My Trip to Parliament

My partner Lyn decided that we should head for the big smoke to celebrate my 50th Birthday.  We are both have guide dog owners and both love London. I used to...

Read more...

University: To Listen, to Learn, to …

University: To Listen, to Learn, to Understand!

I have been asked over and over why I didn't complete my initial dream to be a primary school teacher and for some time it was a sore subject, however...

Read more...

I was hopeful but disappointed

I was hopeful but disappointed

My hopeful journey into the Wireless Bluetooth hearing aid world.   With Danalogic ifit cs71w hearing aids, Resound phone clip+ and a mini mic. I started off by asking my local NHS ...

Read more...

Being an Usher Mum

Being an Usher Mum

Being an Ushers Mum.  In 2011 I went for routine eye appointment and after a small discussion, the optician wanted to refer me for some tests.  I immediately had an in house...

Read more...

BA listened please listen more

BA listened please listen more

After my recent report regarding very unacceptable treatment whilst flying British Airways Premium Economy to Las Vegas in May I’m very pleased to announce that they have at least changed...

Read more...

Centre Stage Applewatch

Centre Stage Applewatch

AppleWatch and smart technology are brilliant for people with Usher Syndrome!  I have Usher Syndrome, which means I was born deaf and in the last ten years I have lost most...

Read more...

Unacceptable Audiology

Unacceptable Audiology

I have Usher Syndrome, I am deafblind and my condition is degenerative. The fact that it gets worse and my abilities change all the time means that I have to make...

Read more...

Life is a Rollercoaster

Life is a Rollercoaster

As part of my ‘rollercoaster ride’ I have experienced huge ups and downs over the years. A husband and four children comes with challenges but nothing out of the ordinary accept...

Read more...

Molly Addressing Accessibility with …

Molly Addressing Accessibility with British Airways

My outward journey to Las Vegas was nowhere near the way it should have been. The necessary call to ‘special assistance’ had been made by my mum prior to the trip...

Read more...

Usher to Usher

Usher to Usher

I hope you don't mind but after researching usher's syndrome and RP I came across your blog and I wanted to introduce myself. My name is Bethanie (or Beth), I'm...

Read more...

Applewatch for Award Winning Paracli…

Applewatch for Award Winning Paraclimber John Churcher

Hi I am John Churcher and I have Usher syndrome type 2. I have always had a hearing loss and was diagnosed with retinitis pigmentosa at the age of 14...

Read more...

Safe and Secure with Accessible Ring…

Safe and Secure with Accessible Ring Video Doorbell

About a month ago The Ring Video Doorbell was brought to my attention and I was asked if I'd like to try it. I love technology, particularly assistive and enabling technology. What...

Read more...

Global Accessibility Awareness Day 2…

Global Accessibility Awareness Day 2016

Usher Syndrome for me means my whole world is accessed via accessible assistive technology. A year ago to the day I was fitted with Resound Linx2 hearing aids.  It has been...

Read more...

Learning from each other - 'In it To…

Learning from each other - 'In it Together @ W Midlands'

Walsall 2016 'Hear no. See no, Techno' Jo Milne, Colin Hetherington and Me. Once again we were blessed with a room full of people all on similar journeys.  With Usher Syndrome or RP...

Read more...

Ready to meet others with Usher Synd…

Ready to meet others with Usher Syndrome

I decided I would like to meet some fellow ushers as never met anyone and my sight has been steadily getting worse . I had support worker for blind visit...

Read more...

Why Access to Social Media Matters

Why Access to Social Media Matters

I have been asked many times what my favourite social media is and why and my answer is always Twitter. The reasons I like Twitter are firstly from an accessibility view...

Read more...

What is in a logo

What is in a logo

We are often complimented on our logo. Molly designed the logo for our charity. Below she describes how and why she designed it. The first thing you will notice is the Molly Watt...

Read more...

Applewatch - Thank you Molly

Applewatch - Thank you Molly

My son read Molly's applewatch blog to me last year.  She made everything sound so easy and to be honest I didn't believe it. My son kept on and and and...

Read more...

San Francisco Adventure

San Francisco Adventure

San Francisco had been on my long list of places to visit and I was lucky enough to go on a girls only adventure with Mum and my younger sister...

Read more...

Effortless Applewatch One Month In

Effortless Applewatch One Month In

So I've now had my Watch a month and the best way I can describe it is 'Effortless.' When I first got it all in its beautiful packaging it felt like...

Read more...

When a Picture is more than a Pictur…

When a Picture is more than a Picture

Taking a photo to me is not just a picture, its capturing a moment, capturing sight I no longer have.   I take a picture and then take it apart to...

Read more...