Warren Wilson

Donate Online
Donate By Post
Donate By Standing Order

Name:

Warren

 

Length of time you have lived with LHON

5 years  

 

So there I was stood in a small club at the age of 18 with a group of friends and my girlfriend all huddled together singing along to the Noah and the Whale song ‘In Five Years Time’. None of us knew where we would be in five years time, but boy how our lives have changed over those five years. 

I was basically a normal 18 year old, I drove, I went out over the weekend, I went to Sixth Form College, I played video games and I enjoyed the occasional kick about with friends. 

About a year after that night when I was terribly singing that song I lost a significant amount of my sight whilst I was doing my a-level exams. Between May and September 2009 I went from being fully sighted to being classified as severely sight impaired (blind) which is a bit of a mouthful if you ask me. In practical terms it means I can’t read, see faces and see anything on a screen. The full field of my vision is affected and I can only really see high contrast things or blue things. I can sometimes make out logos if I hold them right up to my right eye. I can tell the difference between a diet coke and regular coke bottle (go me!). In VI sport terms I am a B2.  

I guess most people’s reaction, and when I remove myself from the situation, my reaction is one of shock, sadness and a little bit of pity. However, loosing much of one’s sight is something you can only really appreciate when it happens. The psychological process you go through is an incredibly individual one. For me, I have just rolled with it. When my sight was initially going and I was told I could go blind by a consultant in the hospital it was a bit of a shock and I was a bit sad. I soon realised, as soon as later that day, that life doesn’t have to be appreciated through the eyes. Sight is one way of conceiving this world, our surroundings and everybody and everything within it. I realised I could appreciate the world in other ways, I could still chat to my friends and family, I could still enjoy a good meal, even if I was served a bowl of cornflakes with orange juice in it in hospital and I could still love and be loved. These things, socialising, appreciating a beautiful day, enjoying a favourite song are things that you don’t need sight to be able to appreciate and things that enrich one’s life. I was very fortunate to realise this at an early stage. 

From that moment on my sight loss hasn’t affected me emotionally and I have remained the same old fool I have always been, making smutty innuendos, playing sport, being a history geek, going out with my friends, doing pub quizzes and the list goes on. 

One of the first things I did when I was discharged from hospital was go to Thorpe Park; my sight hadn’t fully deteriorated by this point so I didn’t do too many blindy things, maybe just the odd confrontation with a rude bollard that didn’t get out of the way. Later on in that summer I went to my first music festival and saw Metallica. I went in the mainstream camping and experienced the full festival experience, tents on top of each other, people falling on tents, you falling on tents, standing in rainy fields and I fortunately had enough sight to be able to see bits of Metallica when they headlined. Since this music festival I have been to others but I now use disabled camping and get a 2-1 PA ticket, that service is luxurious. Anyone can be your PA and the disabled camping is roomy with comparatively nice porta loos. I recommend it to any music lover. 

I guess the main piece of assistance I needed as my sight deteriorated was the practicalities of living with a visual impairment. In this respect I was very well catered for by the Cambridgeshire Sensory services and significantly, the local society for the blind, Cam Sight. The sensory services gave me cane training and that was such good fun and really was a learning curve. I felt a bit like a 19 year old in most respects but in terms of living with my visual impairment I was truly a toddler learning my first steps again and it’s an experience I will never forget. I had a fantastic rehab officer with me, he was very experienced at what he was doing and knew exactly what distance to give me to help me learn but set up a good rapport. I remember learning my route to HMV which was very important to me and it was around the time The Beatles were remastering their back catalogue, I bought Abbey Road and he bought The White Album and I put them both on my I Pod. I also remember him getting me to a point where I needed to ask a member of the public for help across the street. I had always been a bit shy and I rather nervously went up to someone to ask for help only for them to be a tourist with very little English! I have since become much better at asking for assistance when I need it and becoming a lot more confident at doing so, I just do it. Actually, one of the really great things about my sight screwing up is that I have become a lot less self conscious and a lot more sociable and confident. 

Cam Sight also helped me in many ways, one of the most important was with my IT. Again, as I was a bit of a nervous guy I was a bit quiet and shy and when I first saw the IT expert using a computer I was gobsmacked. He seemed to be interacting with this inaudibly quick noise and I thought I had to tune myself into it somehow. Thankfully he slowed it down and taught me to touch type and use screen reading software which I picked up fairly quickly as I already had a reasonable grounding in IT. I now work in the same office as that IT expert and he’s my manager. I’m sure he won’t mind me gloating a bit that I now listen to my screen reader at a faster rate than him. 

I should also mention how amazing Cam Sight were to me. They knew that I was a keen cyclist so, in spring 2010, they raised the money to get a tandem that they loan to me. This was an absolutely incredible gesture and I still use the tandem to this day. They were such a helpful organisation in terms of helping me adjust to the practicalities of living with a visual impairment and I will always be thankful to them for that. Although it is not much, since 2010 I have held an annual quiz and raffle for Cam Sight as I thought it would be a nice gesture and I have raised £4100 for them. 

Since my sight became rubbish I have realised that there are a lot of organisations out there prepared to do amazing things for visually impaired people, things most people would love to do. I have done a sky dive at a heavily discounted rate for charity, there’s the disabled camping and 2 for 1 ticket offer at music festivals. I text the BBC around the time of the Senna film explaining my situation and asked them what they thought the film would be like for me so they gave me some tickets at a premier screening at The Barbican in London. You get to go straight onto rides at Theme Parks and many many more cool things. Basically there are a lot of cool things to do with a visual impairment. 

Probably the thing I am most proud of since living with a visual impairment is getting a 2-1 BA hons degree in History from Anglia Ruskin University. Going to university is something I never thought I would do, and only after losing my sight did I consider it. I thought it would be a great way of learning to do things again but with a visual impairment. I thought it would be an ideal setting to learn how to do assignments, improve my touch typing and screen reading skills, socialise with peers, meet deadlines, improve orientation skills and much more. I finished the course and graduated in the summer of 2013. The course certainly met all my expectations and the thing I found most difficult was socialising with my peers because it was a bit strange meeting the same people week in week out and not being able to see their faces to recognise them. 

The thing I put the most effort into doing well and mastering was meeting my deadlines and this meant touch typing well, using my screen reader well, getting into a routine and finding a way to read my course material. Before the start of a semester I would put in my request to have a digital copy of the module guides, this was often just over a week before the start of the semester. I would go through each of my modules, choose the questions I was going to answer and start to digitise the relevant reading material for those questions. In the week before each semester I would spend from 7am till 11pm scanning book after book. It wasn’t a pretty week but it was essential to be able to be at the same stage as everyone else. It might sound like a bore, but I didn’t mind as doing this uni course was a personal goal like no other in my life and I was going to do all it took to be able to do it. 

Another thing I found tricky was exams. Not being able to write I initially didn’t know how I was going to do this. I was initially told I was going to have to dictate my exams and I was terrified about this, I honestly thought it was going to jeopardise my place at uni because it would simply be a far too unusual way for me to do an exam. Therefore, after much productive discussion with the student services department I was able to type my exams which was a much more normal way of doing exams. However, the difficulty now was remembering the information. Again, I did master this but only through monotonous dedication. Leading up to an exam I would take three topics from a module and a question from the module guide on each of those topics and I would write an exam answer for each of those questions including references. Once I did this I would read them again and again until I remembered them off by heart. This meant that once I got into the exam room I was able to just reel off an answer and quite often I got my best marks in exams. This was not easy and this meant I worked through Christmas day and my birthday on occaisions but as I say this was such a personal goal for me that it was completely worth it. 

When it came to doing my dissertation I put all my organisational skills, scanning skills and my new found knack to ask for help to the test. 

I finished university with a 2-1 and this is one of the only things in my life I have been truly proud of. I couldn’t believe I did this and truly surprised myself with how well I did. 

Finally, I have also managed to maintain a good level of fitness and I have developed an interest in playing sport at a competitive level that I didn’t really have before my sight went on gardening leave.

Before my sight bit the dust, I used to do free weights at home so maintaining that wasn’t a problem as I could do it with my eyes closed anyway. I guess what I have done slightly differently since my sight loss was getting involved with competitive sport. This was one of the most valuable things I have done. I was interested In VI football and first gave it a go at a disability sports day on my 21st birthday. I did wall climbing and played with a sound ball. The VI Football was good and I tried as hard as I might to get it set up in Cambridge but I was making no progress. Then in January 2012 I found out about taster sessions of goalball, I again thought what the heck and gave it a go. It caught me quite quickly and the club grew. We eventually entered tournaments, coming joint second in our first tournament and we now have a well established team in Cambridge. Around the time I left uni, I entered my last novice tournament and went to a Goalball talent ID day. The following month I had a phone call from the national governing body of goalball offering me the opportunity to join the GB squad at a training camp in Germany! I snapped their hand off and gladly took this opportunity. This was a crazy time for me, finishing uni, turning 23 and going to a GB training camp all in the space of a fortnight, just slightly over a year after I first started playing the sport. I couldn’t really believe it. I now play at elite level for the Nottinghamshire Sheriffs Goalball Team and have nearly completed my first full season of elite level goalball. If I have found my peak then fair enough, I have found a sport I’m good at and love, with a group of people who are just amazing, everyone in the sport is golden and I really wouldn’t be anywhere else other than at a goalball tournament. However, if I haven’t found my peak in my still early involvement with the sport then who knows what awaits me? 

It has to be said that the social side of playing VI sport is equally as pleasurable and valuable as the competitive side of it. As well as goalball I also play VI Tennis in Cambridge with a lovely, cosy club. Both the goalball and tennis clubs are extremely sociable clubs. The people are not necessarily the typical sporty jock types and I’m not sure I would enjoy the clubs as much if the members were like that. They are people who have just given something a go and often just want the benefit of the social side of sport. It seems to me that, some of the nuances of doing things and living with a visual impairment are learnt by sharing experiences with other visually impaired people and as you share experiences you become friends. Through my involvement in VI sport I have realised how small and friendly the blind community is. 

All in all, losing much of my sight at the age of 19 has been strangely one of the most life affirming experiences of my life. It has shown me how great people can be and it has given me a greater appreciation of life than I could have ever hoped for. I now feel I am more confident, outgoing and determined than I was beforehand. Yet, at my core I am still that same 18 year old who enjoys going out over the weekend, playing karaoke video games and playing sport with my friends. I guess, if I was to go back to the five years time song, in the five years I have shown the symptoms of Lebers life has changed but then that’s life, parts of me have changed with it and parts have stayed the same. Ultimately, this amazing ride we are all on keeps on going and we are on it to enjoy the ups and downs. Weeeeee!