Blind Inspiration on the Pool Table

On and off for just over 20 years, I have played English 8 Ball Pool in local leagues and represented one of the leagues in regional and national tournaments. One of the leagues I even helped to set up and am still on the League Committee as Treasurer and Divisional Secretary. It can be fair to say that I enjoy the sport and am a fairly decent player, with trophies to show for it. When my vision loss began I sincerely hoped I would not have to give up something I really enjoyed.

The start of our Summer 2014 season coincided with the start of my vision loss. My dad, who is Captain of the team was away for the first game of the season so I had to stand in and skipper the side. At this point my vision hadn’t reached the pixelated stage, but was merely like looking in to a bright light then away again. Because my eyes weren’t 100% I decided not to put myself in the first set. We won it 5-0 so the same five played again and guess what? Yes they all won again. There was two of us waiting for a game but I couldn’t change a winning formula. In the final set one of the guys let me down but we won 14-1 so I couldn’t complain.

The next week dad was back to Captain the side. I said that I didn’t want to play. I lied, of course I wanted to play but didn’t think it fair for me to take the place of someone who had full use of their eyes. We won again. Over the coming weeks, if I wasn’t working I’d go to the matches, practice with the lads but declared myself unfit to play unless desperate.

This continued for a number of weeks, including the team winning. Every week they’d ask how the eyes were and each week I think they were almost equally as frustrated as me with the progress, or lack of. Naturally there was lots of banter and jokes, which I enjoyed, especially as I’ve always been able to give as good as I get. Some of the funnier moments came when I was asked to look at referee’s decisions that weren’t even close, as I was also a qualified referee. A referee that can’t see sparks off all the usual Specsaver jokes but even they couldn’t help me.

The day after I was diagnosed with LHON we had a match and my dad was away again so I was Captain again. I know, he goes on more holidays than Alan Whicker but he is retired and I guess that’s what retirement is for. There was three games left in the season, we had won all but one of our games and all we had to do was win this one to become the division champions. No pressure there then. Well I didn’t think so until I got to the venue and found we only had a bare five players including me!! I hadn’t even taken my cue. Even though two of the missing players were two of our better players over the season I still felt we had a good chance of victory.

I picked the first set with me at nubbier five, thinking that the others would secure the set, leaving me with a no pressure frame at the end of the set. I did have a no pressure frame but only because the previous four had all lost. So it was up to me, the blind one who hadn’t played all season to turn this around. I borrowed a friend’s cue, my opponent broke and the frame started.

During the season while practising I was learning how to change my game to accommodate my vision loss. I started by looking at my object ball really closely and seeing where I needed to hit it in order for it to go in the direction I wanted. Then I would go back to address the cue ball and using the visualisation from the object ball, point the cue in that direction to line up the shot and hit the cue ball. This had varying success and was more successful over shorter range shots than long ones. When you watch any cue sport you will notice that players generally rest their chin on the cue when taking a shot. This is so they can see directly down the cue to where they want to hit the cue ball and through onto where they want that to hit the object ball. With central vision loss this was no good for me so I decided to raise my head off the cue and look slightly above the balls so they appear in my lower periphery. This again isn’t perfect but nothing will be now. Some balls still get lost in the central vision, in fact sometimes when trying to pot the black, it blends in with the pocket. A nuisance when that is the aim of the game but we now play with a striped black, which helps.

Armed with my new styles of play, it was up to me to start to turn this game around. To start with the frame was quite even but as it went on the pressure of playing a blind man must have started to hit home. My team mates definitely made sure he knew as he kept making fouls shots, giving me two visits every time. I lost count of how many he gave me as I slowly edged nearer potting the black. His downfall came when he missed three very easy attempts to pot the same colour, which really got to him and I finished the frame off, to give our team a more respectable 4-1 deficit in the first set. With my opponent playing that badly, it is a frame I would have won easily with full vision. He undoubtedly got more stick for losing to the blind man but more from my team mates than me. I was far too pleased at just winning the frame to contemplate ridiculing the opposition, besides my team mates were doing a good job. You should have heard the excuses he was coming out with though.

I put myself at five again for the second set and it really must have been blind inspiration as we lost only 1 of the first four frames, meaning my frame would tie the match at 5-5, if I won it. It didn’t start well for me as I gave away a silly foul by accidentally touching a ball near my rest hand. I think I may give away this type of foul more often with my vision loss. He potted a few but didn’t finish the game off so I hung on in there and fought hard, eventually making a great three ball clearance to leave myself with a long, down the rail shot on the black. I lined it up and played my shot but it rattled in the jaws and came out, leaving him with a shot on it. He also rattled the black but this time it stayed over the pocket, which even I couldn’t miss, or could I? My opponent tried a bit of gamesmanship by starting to unscrew his cue. I asked if he was conceding and he stopped. I played my shot and the black went in to tie the match. I couldn’t believe I’d won two frames and I didn’t believe the smile on my face could get any bigger.

I thought I’d call their bluff for the third and final set by changing my position. I also didn’t want the match on my head if it went to 7-7, so I put myself third. The first two frames were shared and I was playing the guy I beat in the first set. This brought all the ridiculing back and he was even more determined to beat me this time. This showed in the way he was playing, concentrating more and choosing his shots more carefully. He wasn’t leaving me much so I was having to play more safety shots. This isn’t that easy with reduced vision, as judging distances is a lot more difficult. but I tried my best. His new attitude seemed to be paying off as he got down to the black, while I still had three balls on the table and they were all on a cushion. My winning streak looked like coming to an end as he got down and doubled the black into the middle pocket. I was about to shake his hand to congratulate him but before I could the cue ball had also found its way into a middle pocket and I had won the frame. All I could do was laugh, after shaking his hand of course. I couldn’t believe I had won all three of my frames. Judging by all the cheers and laughter, neither could most of the other people in the place. You know I said my smile couldn’t get any bigger, well it did. three out of three for the blind man on his first match of the season woo hoo!!!

That frame put us one ahead and only needing one more for the match and the division title. We won the next two frames, making the score 9-6, to take the title with two matches to spare. So it was a great night all round and not the blind leading the blind, as it appeared at the start of the night. I joked with the lads and later my dad that I’d be disappointed if I was dropped next week and it became a running joke but I had a 100% record and I wanted to keep it, even if it was only three frames. In fairness my dad did want to play me but I declined, although I will change my attitude for next season, now I know my sight won’t be coming back. I don’t want to give up something I enjoy if I can still physically do it and I’ve proved that now. It’s up to the Captain now if he wants to play me, so over to you dad!!

To finish off, I normally write a weekly match report for the whole league to give to local newspapers and websites. I’m not normally one for blowing my own trumpet but given the circumstances can you blame me?


One Georgie Orwell

In July 1998 I graduated from drama school with a BA in Acting. Over the next 16 years I have performed on stage, in plays and pantomimes and on screen in films, TV series and commercials. It is truly what I love to do. When my vision loss started, one of my biggest fears was that I would’t be able to perform again. My passion, what I had spent so much time and effort training for and made sacrifices to achieve what I had, was possibly being taken away from me. Not without a fight though and that fight started on the night of my diagnosis with ‘One Georgie Orwell’.

I had auditioned during the journey ro diagnosis day and even performed in this show the week previous but this was the first time when I knew my vision loss was permanent. That made a difference to me as I knew it could be the last time I performed, my swan song as it were. I say the last time but the reason we were doing this and the previous weeks performance was to raise funds to take the show to New York in October. More about that later.

The show itself wouldn’t really test how I relate to others on stage, as I play the narrator, which has little interaction with others. Neither would it test my ability to read and learn scripts, as I had performed it before and was brushing it up, although others may beg to differ regarding learning the lines. What I felt it would test is my ability to actually get up on stage and perform to the level I had previously without my sight. The best way to describe my vision now is like watching ‘Police Camera Action’, where the people who haven’t consented to be filmed have their faces pixelated, only it’s not just the faces it’s everything. I now live in a pixelated world and I need to learn to live in it, let alone perform.

My fellow actors were all good friends as well, so they all knew I had an eye problem but not the extent. Officially neither did I until a few hours earlier. These would be the first people I told outside of my family and work. I didm’t really know how to go about it or what to say but as I met them all at different times I told them all individually. It was one of the first things they asked so I couldn’t really keep them all waiting. I said that I had a genetic condition which has caused some of the cells in the optic nerve to stop working, meaning not all the signals are getting to the brain and therefore I have a blind spot in my central vision. The vision shouldn’t get any worse but may improve. All were truly saddened for me and hoped that things would improve. There were questions, most notably is there anything that can be done? Being newly diagnosed I fielded the questions as best I could but from my research I knew the answer to this particular one. As there’s nothing wrong with the actual eyeballs there is no surgery. The problem lies with defective cells in the optic nerve, which at the moment cannot be cured but who knows what technology might bring. There is a clinical trial in Newcastle that my specialist has put me forward for. On it they are trialling a drug that has shown signs of improving some peoples vision but its not available in this country yet. Generally people can’t believe that in this day and age nothing can be done but it is quite a rare condition and at least there is now a lot of research going into it.

We set up for the show and ran though a couple of sections before getting changed. It was a very low key, relaxed performance so we mingled with the audience before the show started. A friend of the family and her husband arrived so I had a chat with them but didn’t say anything about my eyes. I didn’t want to draw attention to it. I noticed a couple of other friendly faces arrive before the show started.

Being the narrator I started the show with a direct address speech to the audience. Normally this wouldn’t faze me, in fact it was my forte when doing panto. I loved it. The more the audience gave me,the more I would give back. I fed off it. But now I couldn’t see the audience so how much more difficult would it be? As t was an intimate space the audience were quite close so although it was like an ID parade for ‘Police Camera Action’ with all the pixelated faces, I could still see them all there and feed off their energy. The opening went well and I felt I got across what I wanted to. It still felt weird as I found it difficult to focus when I couldn’t see properly what I was supposed to focus on. This continued for me until a section where I speak as Orwell. The speech was almost the complete opposite to what I had been doing. Although it was a monologue, it wasn’t aimed directly at the audience and I was playing a proper character. Much more like conventional acting. Not being able to see the audience at such close proximity actually helped as it gave me the chance to focus on the words of the speech and what they actually meant. For this reason it was probably the best I had done it. Then came the interval and a few moments to reflect on the first half.

I always found the second half easier as there were less and shorter speeches but there was one part that still troubled me. Towards the end three of us did an excerpt from ‘1984’, with me narrating and the other two playing characters from the book. In the past it was considered a nice touch to have me read it straight from the book so for this reason I had never learned it. With my sight deteriorating over the last few months I knew I wasn’t going to be able to do this so I set about trying to learn it but it wasn’t quite going in fully. I hold my hand up, I cheated. I printed the passage out in font size 20, the size I had been trying to learn it from and put it in the book. This cheat created a problem as it obviously became my security blanket. Before vision loss I was a great sight reader, being able to look away from the page then glance back down to see where I was before carrying on. I was trying to do this with vision loss. I would speak the text I could remember then search the page for the bits I couldn’t. Even with font size 20 this was difficult as I could only use my peripheral vision so bits went missing. I struggled through and it seemed to go fine, although one of the others did have to interject a searching pause in order to keep up the tension. I was grateful for it. Then came the end of the show and the post mortem.

Firstly I spoke to my family friend and her husband bur I didn’t mention my news from earlier in the day. It wasn’t intentional but looking back I think I wanted to see if they noticed a difference, not just in my acting, as they had seen me before but also in me as a person. This sounds like a test but it wasn’t. I would have said something if we’d chatted for longer or if the subject had come up. It didn’t come up because they hadn’t noticed. They enjoyed the show, getting inspiration to read some Orwell and thought I was very good, (naturally).

Later I spoke to an old actor friend of mine. We spoke about the show and had a general catch up, as we hadn’t seen each other for a while. As part of the catch up I spoke about my vision loss and what I had been through. He was visibly sorry for my situation but he has the most remarkable way of putting a positive spin on things. he spoke about disabled and visually impaired theatre companies and even had a contact foe me. Now there’s something I need to research..

The first day of the rest of my life was now drawing to a close. I had proved to myself that I can still perform, even if it is a slightly different experience but everything will be from now on. I guess I now have to prove to others that I can still perform.

Before I finish this pot I did say more of ‘One Georgie Orwell’ in New York later so here comes the shameless plug. For those of you in and around New York or visiting at the end of October, ‘One Georgie Orwell’ will be performed at Teatro Latea, Lower East Side from 28 October – 1 November and tickets can be bought from Drop me a line if you’re coming and we can have a chat in the bar afterwards or maybe you’d like to show me the sights of The Big Apple from a visually impaired point of view.

Diagnosis Day

July 31st and my parents had already travelled to Eastbourne to celebrate their anniversary and I was off to the less picturesque Camberwell and King’s College Hospital. I had been there before but had driven, which of course I can no longer do. In fact I had stopped myself in early May as i no longer felt safe. I had visited the TFL journey planning app to find the best route, which involved a bus, two tubes and another bus. A few months ago this would not have been a problem but during this period I had been finding travel more difficult.

The first bus posed the first problem. Four different buses visit my local stop and two of them go to the tube station but I find it hard to pick out the numbers until they are very close. I have to stop every bus and hope its the right one or apologise. I got the right bus, well I did have a 50/50 chance. Fortunately I get off at the terminus so no problems there. Saying that, these days London buses actually talk to you, announcing the number, destination and next stop, which makes life so much easier.

The first tube was fine, I had been there many times and I was only going 2 stops but the change over was something new, a station I had passed through but never got off at. Where did I need to go now? All the signs dangled from the ceiling. Not a problem a few months ago but with the sight loss I would need to be taller than an NBA basketball player to read it clearly. At 5’8″ I could make out bits so asked someone from the station for directions. I listened for announcements to get on the right tube, as I couldn’t read the digiboards. This tube was similar to the bus as it spoke to you so no problems getting off at the right place.

The last time I visited King’s College I thought the hospital was literally just round the corner from the station, walking distance but the journey planner said I needed a bus, which confused me. I got out of the station and looked around. With what vision I had I did recognise some things around me so decided to ignore the planner and walk. I was right and found the entrance to the hospital just around the corner.

I entered the hospital and felt overwhelmed. There was a lot of movement and I couldn’t see a reception desk but there was a map. I went over to look at it but with my face inches from the wall I could’t decipher what was going on. It was large enough but may as well have been written in hieroglyphics and I couldn’t see the eye department. How ironic! A kind cleaner, well that’s what she looked like, tried to help but she didn’t know where the eye department was. She stopped a passing porter and said I was looking for the eye department. He said it was in another building and to follow him. He took me to an exit and said, ‘Can you see that brown transit van over there?’ Naturally I looked over. I could see something that looked like the shape of a transit but that’s about it so I looked at him blankly and replied, ‘Not really’.
‘Ah that’s why you want the eye department.’ He won’t be a porter for long! He then said it was the building next to the van. I thanked him and hoped the van didn’t move.

I found where I had to go, checked in and took a seat. The waiting area reminded me of an old school hall. The parquet floor, large windows and classrooms that came off the perimeter of the hall, that were now being used as consulting rooms. The only thing that was missing was the PE apparatus clinging to the walls waiting to be used. I got called in and an assistant did more tests. My vision must have got worse as all the letters on the chart were difficult until she brought it closer. Before I could at least do the top row and sometimes the second. Field of vision was done again and I went back to the school hall.

The next time I was called was to see the specialist. We went over my old notes and all the test results. I wish I learned the numbers in the colour blindness test as they were much more difficult than before as well. We discussed the history of LHON in my family and I was sent to have my photo taken. Just as well it was only my eyes, as I hadn’t dressed for a photo shoot.

The next time I saw the specialist I knew he would be delivering the news that could change the rest of my life. How did I feel? Apprehensive and anxious, as after four months I’m finally going to find out what is wrong with me, still hoping that my vision loss would be temporary. I didn’t want to consider the alternative but knew it was a definite possibility and the most likely one.

He confirmed that I had LHON and my heart sank but not for long, as deep down I knew it was coming. Knowing a bit about the condition due to my family history made me better prepared than if I was going in blind, as it were. The specialist also made it quite positive, which I didn’t think possible. He said that my vision shouldn’t get any worse, which was good news within itself as I was fearing the worst. He also said there was a possibility that some vision could return, even better news. There are some clinical trials in Newcastle that include a drug that has shown signs of improving some people’s vision. He’d told me that I’d be visually impaired and not be able to drive but still gave me hope to the extent that I may get behind the wheel again. Seeing is believing for that one though. I would be registered visually impaired, need to be assessed by social services and attend a low vision clinic but first a genetic blood test to confirm which mutation of the gene I have. Questions were answered and I was sent to the other building to have my blood taken.

I did feel that a weight had been lifted as I now knew what was causing my vision loss and was no longer in limbo. I had a new life ahead of me with new challenges that I intend to face head on I thought I might feel upset, as I had in previous hospital visits when I realised I could be facing permanent vision loss but not this time. For some reason I was OK and felt ready to face the challenges ahead. The first of which was getting my blood taken.

Forms in hand, I found where I was to have my blood taken. It was smaller than I thought, with few people around and I couldn’t work out what system they were using. I looked for a reception desk but heard a voice say, ‘You have to take a ticket.’ I looked in the direction of the voice and a porter pointed in the direction of the ticket machine. I took one and expected to wait for a while but my turn came quite quickly. I think the phlebotomist may have been new as he wasn’t sure what to do with some of my forms. If I wasn’t nervous before then I was now. Saying that it was probably the easiest blood taking session I’ve had. Seven little bottles were taken with less problems then I normally have taking one. I was free to go after nearly four hours in the hospital.

There was a nice cafe near the station so I headed there for lunch. I explained to the man at the counter that I couldn’t see very well and asked what sandwiches they had. I stopped him when I heard one I liked and my phone rang. It was my dad from Eastbourne, he’d not heard anything so gave me a call. I’ve said he’s not the most patient person haven’t I? ‘I’ve literally just come out and got to the station.’ I explained and proceeded to offload all the information I had just taken in. I don’t know if it all came out, whether it came out in the right places or if it was comprehensible but dad seemed to take it in . He had words of empathy and advice and to keep my spirits up until they returned. I didn’t want it to affect their time away but I knew it probably would. My dad can put a brave face on it but I knew my mum would feel it more. I knew she would feel guilty as the gene runs along the maternal side. She has not knowingly passed this on to me. I don’t blame her. I don’t feel any differently towards her, she’s my mum. There’s absolutely nothing she, me or anyone could have done to change it. It’s been lying there dormant for years and has only decided to trigger the vision loss now. Don’t know why but life goes on.

Next to be informed has to be my sister, not just because she’s my sister but also because the gene runs through the maternal line. I called her while on an overground section of the tube. This was a very different call to my dad’s. I told her what the specialist told me and answered questions as best I could. We talked about possible implications and I could hear her getting upset. I highlighted the positives, like the maternal family members that haven’t developed vision loss and how slim the chances of developing the sight loss are according to the statistics. She was obviously and understandably worried for the future but I wouldn’t let her get off the phone until I could hear she was OK.

My sister getting upset triggered my waterworks, on the train as well. As much as I tried I couldn’t hold it back. Don’t get me wrong, not all out balling but there was a constant stream down my face. I don’t think many people noticed so whatever street cred I had, remained in tact. I gathered myself together and decided to see my manager at work to give them the news as it was on my way home.

The Journey to Diagnosis Day

My parents got married on 31st July 1971, 43 years later the day became special for another reason. It was the day I was officially diagnosed with Leber’s Hereditary Optic Neuropathy (LHON). A genetic disorder that can cause the optic nerve to atrophy, resulting in vision loss.

I first noticed a problem with my vision in April, after a diabetic retinopathy. I described it as what you see after looking into a bright light. Not constantly but enough to notice a difference. I was seeing my optician regarding my contact lens prescription so would talk about it then. They did some tests and gave me a letter to give to my GP. Initially I was hesitant about going to my GP as we had been talking about vision loss due to diabetes but I went and was referred to a local hospital’s emergency eye clinic.

This was the start of the waiting game. Early May I visited the clinic but there were no doctors there so the nurse did some tests and said I’d receive an appointment in the post. A week later nothing had arrived so I called and they suggested I go back, so I did. A nurse did the same tests, a doctor looked at the notes but the nurse came back and told me there was nothing serious, I just had to keep my appointment when I got it. The letter arrived and I really hoped there was nothing serious as the appointment was scheduled for the middle of June!

The weeks went by with my vision getting progressively worse. Reading was becoming difficult, with work colleagues having to read some things for me and show me where to sign in. Watching the football World Cup was hard and not because England didn’t do well, that was expected. I couldn’t see the ball too well and the players were just different colours running around. The penalty box melee at corners was just impossible to distinguish.

The day of the appointment came and I spent over two hours at the hospital. They did a variety of tests, I waited for the tests and I spoke to a consultant. Apparently I was baffling them as the eyeballs were healthy. While talking to the consultant, he asked if any eye problems ran in the family. I could’t recall any but while waiting for the field of vision test I remembered that my cousin had lost his sight, aged 18, (about 12 years ago) but I couldn’t remember what caused it so I got my dad to do some investigation. Well he always wanted to be in the police force but was too short. The result of his findings was LHON, so I informed the consultant. My cousin was on my mothers side and our nan also had eye problems but they seemed to dismiss the information. They were still baffled so wanted me to come back for more tests and an MRI, for which I would have to wait for another appointment.

In the meantime my dad and I researched LHON on the internet and spoke to my cousin’s family but not my cousin. All of the research was pointing to LHON as the cause of my vision loss but I didn’t want to accept it until it was confirmed, officially, by a doctor and I felt talking to my cousin was accepting it. I feel bad about this but I didn’t want LHON, I guess no one wants it but I still had hope until it was confirmed.

I received two letters with appointment dates, one for more tests and one for a follow up but no MRI. These were for the beginning of July. While waiting I tried to chase up a date for the MRI, as I figured there was no point having the follow up appointment if I hadn’t had an MRI, but was unsuccessful. I went to the hospital again for the tests and they must have took pity on me as they didn’t do one they planned to, as they thought it wouldn’t help them. The consultant asked about my MRI and was shocked to hear I hadn’t received an appointment yet. They got straight on the phone to the NRI department and said that I needed a scan immediately. I was booked in for the next day. Its amazing what can be done when the request comes from the right people! The consultant was great saying they would chase up the results in time for the follow up appointment in a few days. My faith in the system had gone up a couple of notches after today.

My dad came with me to the MRI scan, not just as a chauffeur but also as a scribe to fill in the forms. Considering the difficulty I had getting an appointment I was amazed at the lack of people there. I expected lots of people waiting for scans like a factory conveyor belt but it was much more civilised. The scan itself went OK. It was a little noisy but the music in the headphones provided helped to drown that out. It went incredibly quickly. I only thought I was in there 20 minutes but my dad said it was nearer double that. He is not the most patient of people though. Back to waiting but only a weekend this time.

At the follow up appointment the consultant looked at my eyes again, did more of the same tests then we sat down to discuss things. The MRI was clear, my vision had deteriorated but he still didn’t think it was LHON. He had not seen a case in a 41 year old and the field of vision patterns were not consistent. They had to refer me to a specialist at King’s College Hospital. I still had hope and still refused to accept it. From my research I knew there had been cases from 3-70 but the consultant didn’t think it was LHON so I was clutching onto that straw.

My appointment came for the end of the month. Advice came from all directions with a recurring theme – Moorfields Eye Hospital. Everyone, including some of you reading this, was saying it was the place to go. I guess the clue is in the name but I had been so far down this path I really didn’t want to start the process again. I did speak to a consultant about this and they assured me that I wouldn’t get to where I was any quicker, which is what I thought. Anyway the specialists at King’s College have the same qualifications as those at Moorfields.