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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...


The Beginning

As anyone who suffers with Ushers will know it is a trying disease which has a profound effect on not only the sufferer but those around them. All too often this is the frightened parents coping with the prospect of watching the child they love struggling to cope with a world that doesn’t really know or understand their illness. It is the children who have to realise that their Mum or Dad are “different” and can’t see them grow up or hear their words. There is one group however that very few people mention or consider and that is the partner of an Usher sufferer.

These people share the hardships of life not through having to because of hereditary but through love and caring. These people feel the pain of the sufferer but also feel their own pain. These people fight each day to survive for themselves and their partner. I know I am one of them.

I think to understand my life you need to know the full story. It may take a while so sit down and make yourself comfortable.

It all started one beautiful August afternoon (13/8/1991 at 2 pm to be precise). I was being a Good Samaritan and helping a teacher find the area office. There I saw a beautiful lady in a flowery sundress that captured my heart immediately. To look at her you would never know she has Usher’s and if her colleague (a mutual friend) hadn’t said I wouldn’t know of her disability. The next day I telephoned her and arranged a date. She was very open about her condition although at this point we didn’t call it Usher’s but RP.

I quickly fell in love with this beautiful lady and it wasn’t long before we started dating. I guess I realised the true extent of her illness till we had been going out a fortnight. She came to stay over and we went to the pub for the evening. As it was summer we left in bright sunshine and everything was easy. By the time closing time came it was dark. We walked home and Nicole clung on for dear life. In fact her grip was so tight it hurt and she stumbled a few times. Being a new relationship and a gentleman I didn’t say anything until we got home and asked if she was ok. She explained that she couldn’t really see anything during the walk. It didn’t change the way I felt about her but it made me think.

I took my wife to meet the parents and the rest of my family (I lived away) the following week. They fell in love with her instantly but didn’t fully understand her illness until darkness fell. They lived in a flat which had dark outside stairs. We had to climb them followed by my mum and dad and brother. As we climbed I told her “step, step, step, level”. Later my brother asked what the instructions were for so we explained. Still we didn’t know about Ushers..we thought she just had RP!!

Our love grew and a year later we married. I loved her with all my heart just as I do now but neither of us knew what lay ahead of us. We struggled to start a family and had IVF. We never thought it the day would come but the little blue line finally materialised. We headed to the docs for confirmation. At the end of the joyful visit the doctor asked Nicole “so what is Ushers Syndrome?” We looked non- plus at each other as this was the first time we had really heard of it. The doctor just shrugged and told us not to worry about it until after the baby was born.

Nicole had a real hard pregnancy. High blood pressure and pre-eclampsia prevailed throughout and I nearly lost her on the operating table but we came through and we had our first daughter. A few weeks later we went back to the doctors as we wanted to know about how Nicole’s disease would affect our new baby. The doctor sent us to a genetic counselling. It was at this meeting that our world started to fall apart. I will tell more in part 2 of my story