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Sunday, 09 November 2014 00:00

Young and Living with Usher Syndrome

Hey my name is Jodie, and I am any normal eighteen year old except having to cope with this cruel condition too!
So here’s my story.. I had no clue what RP or Usher syndrome was until I joined secondary school, and had a friend in my year who was diagnosed with it, I learnt bits from her just by asking her questions about how she coped and what it was like. I knew she struggled in the dark a lot because she always asked someone to guide her around the school. I always thought to myself how brave she was coping this condition at such a young age and that I was the ‘lucky’ one that I didn’t have it. She sadly left by the end of year seven and then forgotten about Usher as I got on with my life. The Halloween night came by and I was out trick or treating with my friends and my sister, then there was a low brick wall with a street lamp above it, I just happened to walk straight into it and tripped over and bumped my head, of course my friends laughed and my mum got bit concerned about it because anybody would have seen that. Weeks went by, I began to bump into things or trip over the objects and I chose to ignore it and thought I was just being clumsy child. My mum wasn’t having it so she took me to opticians to have my eye tested, I didn’t really know what was going on and just thought I needed glasses. But until the lady said that I could be diagnosed with Usher syndrome and needed to transfer me to the hospital for further tests. I just sat on the chair froze and thought to myself this is impossible? I was only 13 years old .. My mum went hysterical and burst into tears, so we both walked out the opticians and told my dad and my sister the news, my dad fought back his tears and tried to stay strong for me while my sister started to cry. They already knew little bit about the ushers because I told them about my old friend I had in my school. 
When we got home, my mum researched more on the computer about the ushers, and I used to get really angry at her and telling her to stop looking it up and that I ‘don’t’ have it, I guess I was in denial at that time believing that the lady at the opticians had got it wrong. Then it was the day I had to go to John Radcliffe Hospital in Oxford, my hands was shaking and my thoughts were all over the place but I had to stay strong for my parents. When we saw the doctor, she tested my eyes with field vision tests and I remember the first time I had eye drops in, I hated it! Then the consultant came in and started explaining about the Usher syndrome and gave my parents books and leaflets. I just sat on that chair just blanking everything out and thinking this must be a terrible dream. I went home later on that day, and I knew I had to tell my friends at school, so I started to tell my close friends that I have Ushers syndrome and they were very supportive and already knew little about the condition. So I was little more relaxed around them because they treated me like normal and only ask if I needed help to get about in the dark. I used to be so stubborn and say ‘No’ I can cope with this all by myself and pushed my friends away when they asked if I needed help to get around in the dark, as I walked in the dark by myself, I struggled so much and got so terrified because I didn’t want to walk into something and get hurt. So I ended up telling my friends to help me get around in the dark and they understood that I wanted to be independent teenager but only needed extra help. 
Now my family and friends are all aware of my condition and learnt that they don’t need to go over the top about it and just take one day at a time, I still go to hospital appointments and yet I still moan about going or I didn’t want to do the tests and I still get frustrated when I trip over things and bump into something but that’s something I have to live with I guess? I had no one to talk to about my usher similar to my age until I met this lovely girl Molly who also had the condition. I just remember the first time inboxing her on Facebook and asking how to open up to people about my worries and I kept bottling things up inside me because I didn’t want to upset anybody and wanted them to think that I coped fine. She replied back and she was so calm and reassured me that it wasn’t good holding things in and it’s better to let people know how you’re really feeling. So I took that advice and opened my worries to my close friends and boyfriend and they were really supportive, especially my boyfriend took his time to research the condition and try to understand that I needed little support at night times and not to wave the sides when I can’t see very well, he even goes to the hospital appointments and coped my complaining about the eye tests that I had to do. He was there all along just by holding my hand and making sure everything is ok alongside by my family too.
You should never let usher stop you doing things you want to do in life, even though it may be hard but try and achieve it with extra support, I am very glad that Molly had set up the website and blogs where I can happily read people’s stories and feel a lot better about it when I know I’m not alone in this cruel condition. So I would like to say great big thank you to Molly and her family for taking their time to do this amazing website/charity to get more people to be aware of the condition. Lastly I like to say big thank you to my family for being so supportive and being there when I need it.

Thursday, 06 November 2014 00:00

Our Journey - The Other Half

Our Journey – The Other Half 

This is quite a long story so be warned there is a bit to read here!

Apologise to those who find staring at a screen for long hard but I just needed to get everything off my chest.

I am Dan and I'm 21 years old and I am Molly’s boyfriend and here is my story.

2013 was a strange year for me, I had turned 20 and at the time I was working part time in Sainsbury.

I had been through some personal stuff and wasn’t happy at all, I had no motivation and often felt low.

One night I went to Smokey Joes Nightclub in Maidenhead and met Molly, at this point I was not aware of anything and had never heard of Usher Syndrome and didn’t know anyone Deafblind.

Molly was with a friend who I did know and we were introduced ‘’wow’’ I thought as I saw her ‘’she is beautiful’’ I muttered to myself, but as I spoke to her it appeared that she was ignoring me….. I didn’t know what to think at the time but I persisted in trying to chat, however at this point her friend mentioned that she was deaf and most probably couldn't hear what I was saying!

I could t believe it, I was confused and shocked, it certainly makes you think that you could walk past and try to talk to someone at any time who could have a condition or a problem.

I soon moved on to party with my friends, however, Molly and I added each other on social media and we talked for a bit but nothing was ever mentioned.

One summer evening Molly decided to have a few friends over and asked if I'd like to come.

I was just chilling after a workday and thought why not. When I got there we all had a good laugh and Molly and I seemed to bond, at this point I was  still not fully aware of Molly’s condition and we carried on talking through text as friends casually chatting about all sorts of things, nothing out of the ordinary.

Around this time one of Molly’s friends was having a Birthday and she was having a night out in Reading.

Several of us all got ready together and had drinks and a pizza before heading out, it was at this point that this 'hidden disability' began to become more visible.

Molly was mentioning assistance for her during the night and eventually it was said when I queried it, I didn’t know how to respond I mean how would you?

A girl you are interested in and are good friends with has a progressive eye condition, is severely deaf with hearing aids and cannot see in the dark. You can imagine my brain working overtime trying to process this information and that night I noticed she was being helped around.

It did not out me off at all.

Now for those who don’t know Molly and her family they support Everton FC and I support Liverpool! Yes imagine the banter, Molly was going up to the north west to see her Grandad and asked if id like to join her which I did.

It was during this time that I really saw the condition, having to repeat myself and during the night helping her up and down the road to the club where Her Grandad went for a drink it was safe to say at this time we were both tested as I tried to understand and come to terms with reality and Molly almost distancing herself as though to protect me from her condition!

After the trip and a few days later we started seeing each other and On August 13th we became official so to speak.

So now we are an item what next?

One of the most hard conversations I have ever experienced - Molly spilled the beans and explained everything, her sight could get significantly worse, she can’t go out alone especially in the dark and that she has a guide dog (Unis) who btw is one spoilt but loved dog (more later).

I broke down in tears I mean what a cruel condition no cure nothing.  I felt truly blessed for having both senses – you can imagine the guilt and emotions I was feeling. Molly admitted to me she felt this would push me away.

I am, I guess, a typical man and deal with these things my own way showing little emotion – I would go to the gym for long periods or have some alone time but nothing was telling me to finish things.

After this we got stronger, I haven't stopped learning… admittedly I often walked off ahead or said ‘’did you see that over there’’ in which Molly would remind me time and time again! It sticks now and I don’t do that but could you blame me at the time? Still there was a few times karma came round and smacked me one which Molly never forgets, guiding Molly across the road near her house I told her to ‘’mind the curb’’ she did……. I didn’t! Molly burst into laughter and after I looked around to make sure no one saw I noticed Molly felt a lot better around me and more comfortable – was this because I tripped? I was learning?

Many have asked how I told other people like family and friends. I came out with it straight away. My mum was the first I told along with my Dad, Stepdad and Sisters, they reacted positively (my mum and older sister have posted blogs so check them out) and I felt confident in telling everyone I knew. I told my friends and they all said they respect Molly for all the videos and events she does and I am the same she makes me very proud, I have seen her talk and she’s amazing at what she does! She is a great role model for anyone with Usher who needs some support when they are down and to all those with Ushers believe in yourselves there is nothing you cannot do!

So 15 months in and we are going strong.  Of the future, who knows?

I intend to support Molly on her journey as much as I can while she studies at university.

Not forgetting Unis, who isn't just Molly's guidedog but she's everything to her.  I know she found it difficult in the early days but she's moved on so much and when all three of us go out together, I have one hand and Uni has the other, she is very much a part of our relationship.

There is much more to say but another day...