Moorfields, Glastonbury and the RNC

This is the continuing story of my vision loss.  For the first part please click here.

After numerous tests, including MRI scans, field tests, blood tests, electrodes on my head and across my eyeballs (not as bad as it sounds!), liquids squirted and lights shon into my eyes and even a lumber puncture, the local eye specialists and neurologist came to a dead end with what was causing my optic nerve to degenerate.  So they refered me to Moorfields Eye Hospital in London, arguably the best in the world.


Moorfields is the oldest and biggest eye hospital in the world and is internationally renowned for its comprehensive clinical and research activities.  I had more tests and the specialists there told me that they too couldn't find any underlying problem or a cause and therefore treatment for my condition.  As it is my nerves dying off it is extremely unlikely my sight will improve and they can't tell me if it will continue to get worse or if it will level off and I will keep my remaining useful sight.

Obviously this is quite worrying as the vision in my left eye has decreased rapidly in recent weeks, to the extent that most of my sight in this one eye is frosted.  It is quite possible that my condition is congenital and has been slowly getting worse all my life.  An analogy was used: that nerves have a built in lifespan and that most people have long life batteries whilst, for some unknown reason, mine are cheaper batteries that are running out quicker.

It's not until I try to do things that I have done for years that I really notice I have a problem.  Sometimes reading can be difficult, watching the World Cup has becomer interesting as I lose the ball on screen because of my narrow field of vision.  And it was impossible to watch Wimbledon, which to me just look liked a couple of people running from side to side, spotting the ball being luck more than actually following the game.  I have learned to live with this "new normal", a phrase borrowed from Laura Lawson in her excellently written blog about her own sight loss, "Believing is Seeing".


Since 1993 I have been going to the Glastonbury Festival and this year was no exception.  This year, since my vision has really deteriorated, the festival was a very different experience.  Glastonbury is the biggest music and contempory performing arts festival in Europe.  With nearly 200,000 people on site it is the size of a tented city.  Over 1000 acts play over the last weekend of June and it has become my annual pilgramage.

Though I was able to really enjoy some great music, many of the things that colour the festival and differentiate the place from many other pretenders the the crown of best festival, I struggled with.  The random street theatre acts, the madness and characters that populate the place were so difficult for me to spot, even when pointed out by friends.  The multitude of eclectic stalls selling a vast varietry if wonders, the beautiful site artworks and craftwork decorations, in the main, passd me by.  Watching Muse's brilliant headline set was more like watching an amazing light show than actually seeing them.  I had to be told U2's The Edge had joined them on stage when I asked a friend what the cheers were all about.

Although using my white symbol cane helped amongst the crowds of people, if my sight gets too bad it might be too much for me to even get around the huge site so it was quite an emotional festival for me in the end.  Especially with the final act of the weekend.  Stevie Wonder headlined the main Pyramid Stage on the Sunday night and I watched with the thought I might be watching my last ever Glastonbury performance.  When he ended his set with a monologue about making the world more accessable to everyone: the blind, the deaf, disabled, people of different races and religions, it felt very personal to me.  I was in floods of tears.



But I have to look forward.  I have been given no idea how long my limited sight will last and therefore can't fully plan or mentally prepare for "the worst", however I am looking to the future.  I have applied to the Royal National College for the Blind (RNC) in Hereford, to train in Media (Radio) and Music Production.  I am due to have an assessment before I start, hopefully in September and I'll update Vision Web Sight with stories of the college, the course and my progress.

The college is an amazing place with state of the art equipment, specialist tutoring and all the needs of blind or visually impaired students.  The courses are vocational and not just as case of training people then leavin them to fend for themselves in the real world.  The college actively helps place you in relevant work placements during and after the course.  I'm really looking forward to exploring what I CAN do and not worry about what I can't.

To find out more about the RNC, click here.

It was Glastonbury Festival's 40th anniversary this year and I will be 40 later in a few months.  And you know what they say, life begins at 40!