A A A Accessibility A A A A

Molly Watt Trust

Tuesday, 21 July 2015 06:15

C'est la Vie

Written by  Lynne Morris
Rate this item
(6 votes)

On February 24th 2004 aged 22, my life changed dramatically in one day.  I went from being fully independent living life,  being care free, I had a vague  plan as I had purchased my first house 18 months ago and having my own little car (which I absolutely adored).

I was told on this very snowy day that I had Usher Syndrome and that I had to give up my driving licence as I was unsafe to drive.

Everything crashed to a halt,  my eyes went wide and all I could think was.....that's it...... I've l lost everything! My life is over.  How am I going to get to work?  How am I going to pay my mortgage, if I can't keep my job because I can't drive? My boyfriend won't want to stay with me.....

It all kept going round and round as I sat there with the consultant, my mum (who had driven through thick heavy snow, as we white knuckled our way to the hospital) and my twin brother who was also diagnosed alongside me and we were both registered partially sighted. 

We left the hospital and I was completely stunned. I got into my mum's car and said I'll have to phone work, I can't go in tomorrow, till I figure this out.   I can't even drive home from my nans where I'd left my car even though I was perfectly road legal still, as I hadn't sent my licence back. I just couldn't take the risk knowing I wasn't safe. What if I knocked someone over? 

Several days and phone calls later I am back in work, trying to carry on as best I can, absorbing the changes I had to adjust to overnight like living in a very rural area, no car and no regular buses never mind the fact I was already hard of hearing and now I'm going blind! Totally feeling like a kicked puppy.

I can remember trawling the internet looking for everything to do with Usher and what my future held.   There really wasn't much out there at all.  It all felt hopeless and very frightening. 

I did find a very dear friend who also has Usher on an RP forum.  He helped me so, so much in those early days by telling me what he had already gone through and what I might face.   

He really was my saviour as having someone to talk to and share my fears helped me stay on track and not give up.   He still does that for me today.  I am very grateful to him. :)

I went down the disability road and contacted social services at my local authorities and registered partially sighted with them. I received a symbol cane (short white cane with red bands) eeeeek you expect me to go out carrying this!  No way.....I'm not doing it!  (Folds arms and sticks nose in the air) Hmmph! I am not blind! 

I only used the cane when I was in a really busy environment and all i can say is, it was about as helpful as a chocolate tea cup. Seriously people didn't see it or even know what it was. 

I just got on with my life as best I could with the support of my family,  my friends and Access to Work for the next 10 years.  I got married (the boyfriend stuck by me :-)) and gave birth to 2 gorgeous boys. My disability invisible unless I told you. 

In 2014, I really started to struggle in work, moving around. I was constantly bumping and tripping over things all the time.   It got so bad I started to suffer with anxiety I really didn't want to go to work anymore. I just wanted to give up. 

It finally came to a head when I knocked a little girl (approx 2 or 3 years of age) over in the shop.  Gee whizz! she screamed and sobbed the planet, the guilt I felt, I can not describe. I apologised profusely to her mum and went on my way desperately ashamed and trying to hold my tears back. I went straight to the checkout and bought a chocolate egg, went back to find the mum and little girl.  I gave the girl the egg and said i was so,  so sorry, the mum thanked me and I left. 

As soon as I was alone and safe I broke down. Having 2 small boys of my own, they have also suffered being knocked over by me in the home.  However,  doing it to someone else's child made me realise I couldn't carry on like this.

I made a phone call and got help in the form of a Long Cane (long white stick with ball on the end and red bands) it was time to face my fears and tell the world I was 'coming out'.

Over the coming weeks I trained to use the long cane and all the poeple that knew me had faces of shock seeing me with it but soon adjusted. I personally felt and still feel awkward with it.   I feel vulnerable and alone.  I couldn't be without it now, as it puts my eyes on the floor through my hand and gives me the freedom to hold my head up and look around, where as before I walked with my head down.  There are still people who don't see it,  don't know what it's for......someone even thought I was picking litter!

I asked for a review of my condition with the hospital and had an appointment with my consultant, he registered me as severely sight impaired (blind).  I am now in the process of applying for a Guide Dog.

 

Read 7331 times

 


  

Donate

 

To support the work of MWT please click on any of the Donate buttons below or alternately you may send a cheque made payable to Molly Watt Trust and sent to Queen Anne House, 25-27 Broadway, Maidenhead,Berkshire, SL6 1LY.

All donations and support are gratefully received.

Please complete this form if applicable so that we may claim an additional 25% in gift aid.

 

 

Donations for the Molly Watt Trust help those with Usher Syndrome

Molly Watt Trust - Helpling those with Usher Syndrome

Paypal Donations to the Molly Watt Trust

 


 

 

Recent Blogs

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…

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?

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

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…

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…

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

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…

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!

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

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 …

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

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 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

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

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

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

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 …

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

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…

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…

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…

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…

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…

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

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

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

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 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

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…

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...

Applewatch Awesome but Hearing Aids …

I recently received an applewatch from The Molly Watt Trust, via their GlobalGiving project. I love gadgets. I have ushers syndrome type 3 which is gradually robbing me of both my...

Read more...

Applewatch Accessibility and Connect…

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...

Read more...

A Simple Tap or Touch can Mean so Mu…

Something I am often asked at my presentations is what is the best and most acceptable way to approach or get the attention of a deafblind person. My answer would be...

Read more...

Linx2, Earbuds, Earpods - Definitely…

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...

Read more...

Me, Myself & My Guide Dog x 3 - …

Recently I was invited to appear at the Sense Awards at Kings Cross London.  I had been nominated by friends and colleagues from the Usher Syndrome and RP Community, I have...

Read more...

Josh Dealing with Usher Syndrome Typ…

Josh’ Blog for The Molly Watt Trust Hi, I’m Josh. I’m 22 years old and I have Usher Syndrome type 3. I was born with normal hearing and vision, unlike most...

Read more...

The Jekyll & Hyde of Usher Syndr…

I had never heard of Usher Syndrome until I worked with a girl who has it.   If I’m honest I saw her come in and out with her guide dog...

Read more...

Can Deafblind Access Wayfindr?

An audible App or program for the blind, accessible to deafblind, using hearing aids? There was a time when accessing such a thing would have been impossible and in my lifetime...

Read more...

"Access to Tweet, Tweet to Acce…

I was delighted to see that at last Facebook allows dynamic text for those of us who use iOS and rely on it. Finally those who had been isolated from family...

Read more...

A "Resounding" Success

When I wrote my Applewatch blog back in April this year, I had no idea of the interest it would generate, nor the amazing people or companies it would lead...

Read more...

Please, Please, Please Consider All …

I was prompted to write a blog on reading this quote:  “For people without disabilities,technology makes life easier.  For people with disabilities technology makes things possible” (IBM training manual 1991). That quote...

Read more...

Edinburgh Social Event 3 October 201…

Best Western Kings Manor Hotel, Edinburgh Saturday 3 October 2015 was a great success. It was brilliant to see old and new faces and a time to share some news and...

Read more...

Usher Syndrome - The Importance of A…

I have now realised after many years that always trying to fight Usher Syndrome certainly does not work. I don't know if it's a pride thing or that I am just...

Read more...

Usher Syndrome Awareness

Usher Awareness Day Sept 19th 2015 Dominique Sturz, Usher Forum Austria My name is Dominique and I am the mother of a 19 year old daughter with Usher Syndrome, she is a...

Read more...

Trials and Tribulations of an Usher …

As some of you may know, Jake our sixteen year old son was diagnosed with Ushers Type 2a 3 years ago, at the time Trev and I thought our world...

Read more...

I can no longer hear with my eyes - …

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...

Read more...

We Own The Equinox 19 September 2015

Our sincere thanks go to Mark Dunning and his team at the Usher Coalition for their hard work in putting Usher Syndrome on the calendar thus resulting in so many...

Read more...

Hear No, See No, Techno!

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...

Read more...

"5 degrees and Me"

Another major hurdle, I've reached 21 years old and I still have "5 degrees" of vision still remaining. I know it doesn't sound great and possibly terrifying to many but...

Read more...

The Amazing Positive Power of "…

Towards the end of last year I started communicating with Dan via Twitter.  Dan was working with Radio 4's In Touch and was keen to get me on radio to...

Read more...

Communicate Don't Assume

Up until 12 I believed I could do most things, why not, I was deaf but with hearing aids could hear.  It did make communication an issue sometimes, group settings, noisy...

Read more...

A Mum's Numb Despair to Pride in Sho…

How does a mum feel when she's told her 12 year old daughter is set to go blind - NUMB. First things first, get head around the condition, hate it with...

Read more...

Pushing My Boundaries

Pushing Boundaries This might not be seen as pushing boundaries for some....... However,  for myself it was like jumping out of an aeroplane! I have always admired a local photographers work and I...

Read more...

Access Illegally Denied - Guide Dog …

I was matched with Unis when I was 16 and over the past 4 years have been subjected to terrible discrimination simply because people either do not follow the law...

Read more...

C'est la Vie

On February 24th 2004 aged 22, my life changed dramatically in one day.  I went from being fully independent living life,  being care free, I had a vague  plan as...

Read more...

Asking for Help

One of the hardest things for anyone to do, is admit they need help.  It doesn't matter if you have a disability or not, if you feel like a burden...

Read more...

Flying as Free as a Bird

I had wanted to challenge myself for The Molly Watt Trust for some time. For the 4 years since setting up I have kept busy with Keynote Presentations for the Charity...

Read more...

Claire's Skydive Challenge - 2015

On June 26th 2015 I embarked on a Tandem Skydive with Molly for the Molly Watt Trust. The weeks leading up to it I tried not to think about what I...

Read more...

 


 

 

Bradley Timepiece - Usher friendly timepiece - Molly Watt Trust

©2016 molly watt trust, registered UK charity 1154853