A New Branch of a Mighty Tree

Today Guide dogs for the Blind sprouted a new Fundraising branch here in historic Hereford.  The Founders’ meeting took place  in an inauspicious supermarket cafe south of the river Wye.  I came away buzzing with enthusiasm.  Our small branch consisting of just three members has a tremendous feeling of newness.  I feel as if we created a piece of history today, and that’s why I decided to mark the occasion with a short post in my blog.

Fundraising is a great opportunity to be creative.  I hope that as our branch becomes established we manage to keep the FUN in Fundraising.  Brainstorming ideas for future events has definitely titillated the old brain cells.  In fact it’s hard to stay realistic – in my head I’m already climbing Mount Everest!

Once various bits of paperwork deem the Hereford Branch open I can just see it taking off into the sky like a magnificent bird. There’s nothing like a good dose of excitement to make you feel like you can do anything!  I love the sense of freedom that comes from founding something new.  Although we’re part of Guide dogs, we have the chance to create our own identity and act on our own ideas.  The knowledge that in doing so we’re raising funds for more Guide dogs like the infamous Hereford Hoover gives our mission immense drive.  (How many dual-purpose dogs do you know?!)

So before I put my laptop to bed I just want to donate some contagious optimism to the general reader.  On July 20th 2011 the Hereford Branch of the Guide dogs for the Blind Association is a small green shoot peeping expectantly from a huge tree trunk.  On July 20th 2021 the small green shoot will hopefully have grown into a spectacular branch bursting with leaves.  Dum anima est, spes est!

HELP! I’M GOING BLIND!

Wondering if you might be going blind is not a pleasant thought.  Knowing that you’re going blind can feel like you’re heading for eternal doom.  In this post I hope to paint an alternative picture of blindness for those readers who know that this is an inevitability.  I will  also offer some practical advice, and hopefully by the time you’ve finished reading this article the word “blind” will  not conjure up such fearful images.

Deteriorating vision is easier to deny than to accept.  For one thing, the human brain often compensates for sight loss by replacing indistinct shapes with recognisable ones.  So if your eyes register a blur in front of you your brain will try to make sense of it by replacing the blur with familiar objects.    The dancing cat or waving monkey may in fact be a crooked fence post or a canvas sign flapping in the wind.  At this point your friends or family will probably be nagging you to “get your eyes checked”.    Your vision defect could turn out to be something  that’s curable or helped by prescription glasses.  But occasionally the situation may be more serious.  You might suspect this and be afraid to have it verified, or perhaps you’re already under an opthalmologist and you know that sight loss is fast approaching.
This is often where fear of the unknown – i.e. being blind, takes over your rational head.  Sometimes the easiest thing to do is simply to ignore the reality and get on with your everyday life.  But the trouble with this approach is that one day, if sight loss is inevitable, there will come a point when you can no longer run away from it.
Most sight loss is in fact gradual.  It’s extremely rare to wake up one morning and find that you’re totally blind. You’re more likely to realise you cannot see when you’re trying to read something or spot someone in a crowd.  This realisation that you’re practically blind will probably hit you with a bang, and your world will go topsy-turvy for a while.  Therefore if you know that one day you’ll be blind, it makes sense to slowly introduce yourself to this concept.  A good way to do this is to familiarise yourself  with some of the gadgets and gizmos that are out there to assist visually impaired people with everyday tasks.  You could start with something basic such as a liquid level indicator.  This useful inexpensive little gadget has plastic prongs which hook over a cup or mug, and vibrate or beep when the hot water makes contact.  You may well encounter resistance from people around you who don’t wish to think of you as being blind.  This can make arming yourself with gadgets and paraphernalia tricky, but don’t be deterred.   Talking alarm clocks and audiobooks do have some general appeal nowadays, so if you share your living space with others there’s no reason to be isolated.  However, other people’s reactions are not always helpful – it might be worth bearing in mind that they will be having to readjust too as your vision deteriorates.
 This preparation period could be viewed as a blindfold test drive.  It doesn’t mean you have to become preoccupied with blindness, but becoming more self-aware will help you later on   Familiarise yourself with  what’s available before you absolutely need it.  Browsing through the RNIB catalogue or on an Assistive technology website  might even be inspiring!  You’ll probably be amazed by the variety of aids and gadgets on offer,and most of them don’t require great technical know-how to operate.  The whole point of these things is to help not hinder!
If you’re at the stage where you know your sight is failing this is a great time to build up your list of contacts.    Your local association for the blind, or charities such as RNIB or Action for Blind People are great resources.  The RNIB has a helpline: 0303 123 9999.  Knowing that you’re going blind is actually a great opportunity to consider what you want to do with your life, and to ascertain what assistance (if any) you might need to achieve your goals.  It doesn’t have to be a headlong dive into despair.
Coming to terms with  blindness is often harder than the blindness itself.  Facing it head on might seem like the last thing you want to do.  But from my own experience the more you stick your head in the sand the longer it will take to readjust.  As I mentioned before, blindness is more often than not a gradual process.  Imagining being blind can be frightening, so it’s a good idea to find someone who will listen to your fears and anxieties.  An objective person such as your GP or RNIB staff might be able to offer more practical advice than someone close to you.
What is being blind like?  Blindness does not necessarily mean total darkness.  Most registered blind people in the UK retain some light perception or are able to make out hand movements.  Being registered blind essentially means that the vision you have is no longer reliable or useful.  This does not mean your life has to stop or tone down, but you will need to find other ways of continuing your hobbies.  For instance I’ve always been a bookworm, and when I lost my sight I missed reading more than anything else.  But once I’d accepted that I could no longer read print I began listening to audiobooks and Radio Drama.  Although it doesn’t quite equal reading, I can still get my fill of literature  from Audio libraries such as Calibre and RNIB.
Whether you lose your vision suddenly or gradually you’ll find that you learn to manage indoors far more quickly than outdoors.   The big wide world outside your front door might become a source of terror.  This probably accounts for why around 180,000 visually impaired people never leave home alone.   I can’t pretend that the outdoors isn’t scary at first.  But  I know for sure that it gets more and more scary if you start hibernating.  For this reason I would make it a priority to step outside your front door at least once a day.  You don’t have to go anywhere – but just listen to the birds, inhale some fresh air, stand still and absorb your surroundings.  Slowly a whole new world will start to emerge.  Sounds will seem sharper, the rain will make your nose tingle with a medley of smells,  and if you’re lucky someone might even call a greeting to you.  Even if you meet no one, you’ve shown yourself to the world and you’ll go back inside a more refreshed person.  In time, you’ll find that you still have a place in the world.
It’s common for newly blind people to become very depressed.  Losing your sight is a huge loss, and you will grieve.  If your sight loss is sudden and you’ve had to change your whole lifestyle your emotions will be totally out of sync.  My advice would be to go with your instincts and not to expect too much from yourself.  Accepting that your feelings are natural will help you move forward.  There’s no time limit to adjusting – some people may take 20 years to feel comfortable with their blindness, and others just a few months.  It’s your journey, and you’re the one deciding how fast to travel.  Perhaps it’s worth saying here that a lot of people who find themselves suddenly disabled in any way struggle with asking for or accepting help from others.  You’ll learn how to balance keeping your pride and independence with getting to where you want to go.  This comes with experience.
But blindness or near-blindness does not mean the end of the road.  In fact it’s often a new beginning, despite the fact that you’d rather not have had a new beginning.  When I was at the ‘Guide dog of the Year Awards this year I met Scott and his dog Travis.  Scott lost his sight in 1993 and has just received an MBE.  He’s trekked hundreds of miles, climbed Ben Nevis with his Guide dog and raised £!25, 000 for Guide dogs.  Blindness does not stop you having a life.  Not every one will have the inclination to climb Ben Nevis, but whatever your goals are you can still achieve them.  Being blind may mean that it takes you twice as long, but perseverance pays off.   In my own life it took 18 years to be matched successfully with a Guide dog, but the great benefit of achieving something after a real effort is that the victory tastes super-sweet.
There will undoubtedly be days when you wish you were dead.  But if you forge on you will emerge stronger and more determined than ever.  Your life will not be the same as it was before your sight loss, but that does not necessarily mean it is worse.  Whether you end up training with a Guide dog, competing in the Paralympics, wading through the CDs of the RNIB library or learning to touch type – you will find your own way of learning to live with blindness.  If you keep hold of your dreams and don’t give up,  the darkness will  eventually lose its gloom and you’ll feel the radiance of a rainbow light up your life.

Underground, overground…..

Not many people agree with me when I wax lyrical about the smell of the London Underground.  For me the combination of hot rubber, industrial detergent and all manner of human odours is strangely comforting.  Yes, I do like it.  What I struggle with is the fat slug of passengers clogging up every inch of space from the ticket barriers to the platforms.  Somehow you’re supposed to find a hole in the slug’s body and dive through it to the other side, as if your life depends on it.  If you happen to misjudge this move there’s a risk that you’ll get swallowed up into the slug’s huge digestive system and end up being spewed onto the wrong platform somewhere far away.  Timing is crucial when you’re negotiating the London Underground.  One false move and you find yourself being swept along in the wrong direction, feet flailing, arms flapping, heart sinking.
As a visually impaired person, dodging the giant human slug in the Underground is a heart attack in the making.  Last week when I attended the Guide dog of the Year Awards I had to face the beast head on.  Luckily I was accompanied by a travel-wise mate.  Having a savvy mate by your side is a fantastic help, but if you add a hoovering Guide dog and an overloaded rucksack with wheels that don’t wheel – the best made plans crumble into chaos.  My rucksack with the dodgy wheels was kindly adopted by my companion for the duration of our London trek.  All I had to do therefore, was to steer The Hoover.
We would have been fine had it not been for the aforementioned slug of tourists and commuters.  This giant beast wedged its great body between us numerous times, which left us frequently calling to each other desperate not to get separated forever.  Trying to listen for directions with a hoover-in-harness eyeballing every grain on the ground was no mean feat.  Our stress levels quickly peaked.  The effort of remaining calm whilst being swept away by a perpetually moving monster would test the nerves of the most accomplished traveller.  “Where are you?”  I’d call.  “Over here – in front of you!” was the disappearing answer, and we’d be lucky to reunite within the next five minutes.  We lost count of the number of times we had to hunt down an unoccupied space and simply “take stock”.
Another major bane was escalators.  Those massive metal mountains which move up and up and up…!  Guide dogs cannot travel on escalators because of the risk of their paws getting trapped, so every time we encountered an escalator we had to hunt for a London Transport staff member.  This was not straightforward.  When I lived in London in the early 1990’s there was no such thing as Help Points, so it was mere chance that my mate came across a circular white disc at Euston fitted with Help and Emergency buttons.
We didn’t expect any joy when she pressed the Help button, so when a disembodied voice answered our SOS call it was extremely heartening.  London Transport staff were mostly very helpful once we’d located the Help Points.  But there appeared to be no logical system as to their whereabouts, so searching for Help Points became a quest in itself every time we chanced upon a dreaded escalator.  And once the offending escalators were halted hundreds of steps needed climbing.  There was a moment at Oxford Circus when my companion sailed by on a parallel escalator (there has to be some perk for being the luggage carrier!), and I was seriously beginning to wane.  The steps seemed to be endless, and my legs were growing heavier by the second.  As she passed by she called out to me “Come on Claire!” and somehow I found a spurt of energy that I didn’t know I had.  I’m not sure if Trudy felt more tired than I did, but her front paws were definitely sagging by the time we made it to the top.  It might not have been so bad had we not had to repeat this exercise at least ten times!
On our second day we decided to be tourists and visit Buckingham Palace.  Green Park was possibly our trickiest tube station, but we did not know this when we hatched our plans over breakfast.  Puffing our guts out ascending Green Park’s stationary escalator might have seemed worthwhile had the sky not decided to empty its latrine bucket over our heads just as we exited the station.  Playing the tourist in London invariably gets you soaking wet – as we discovered the hard way.  London rain is hard, relentless, back-stabbing, rib-jabbing pain.  It  literally penetrated our bones as we traipsed through Green Park,  vaguely taking in the scene of mounted Police and majestic trees.  I decided to give Trudy the chance to have a free run despite the fact that we were almost drowning.  A group of excited Japanese tourists pelted past laughing at the force of the downpour.  We were unable to share their merriment.
Trudy was dashing about with the bells on her collar jingling in time to the rain.  She seemed oblivious to the cold shards of silver being hurled from the sky.  Herein lies the sorriest part of my tale.   Trudy used her freedom wisely and performed a “busy” on the grass as we neared Buckingham Palace.   I dutifully pulled a bag from my pocket in order to deposit her offering  in the nearest bin.  All the while the rain was continuing to assault our bodies and we were hunched over double.  I turned towards my rucksack with the dodgy wheels and expressed concern that it might look “unattended” while we were retrieving Trudy’s “busy”.  At this point I  wondered where the “busy” actually was, for it had seemingly disappeared.  In fact it had not disappeared at all – it was under my shoe.  This was quite possibly the lowest point of our London experience.  There was a poignant moment of despair and self-loathing,  but once my shoe had been washed in a series of puddles the hilarity of the situation took over.  Laughter is truly a great medicine.  Hence we were able to reach our destination, Buckingham Palace, where we lingered for about thirty seconds.  The rain was still venomous, so we decided to head back towards the shelter of Green Park station.
As we neared the station we came across a Marks and Spencer, and the prospect of a sandwich tempted us in.  Dripping pools of water onto the floor we took refuge behind a huge pillar in order to try to organise our sodden belongings.  Trudy, who was hoovering up crumbs,  shook her waterlogged fur all over a smartly dressed lady .  If that smartly dressed lady happens to be reading this, I apologise on behalf of my soggy hound.  Throughout the watery chaos we were  being watched by a store detective who must have labelled us  “suspicious persons” right from the moment we entered.  Against the odds, we did manage to buy a sandwich and that kept our spirits afloat as we headed back towards the mayhem of Green Park station.  Many escalators, steps, platforms, crowds and near-heart attacks later, we were sitting on the train at Paddington about to start our homeward journey.
Hereford and London are two vastly contrasting places.  When you’re in Hereford, London seems magical, exciting, buzzing, and alluring.  But once you actually hit that heaving hub of humans, the magic fades into unease, and slowly that unease changes to all-out panic.  After just 24 hours of city strife I was longing for the pure oxygen and grassy hills of Herefordshire.  Now as I sit at my desk I smile as I remember pouring over Tubeplanner early last week.  It is a great online resource for would-be Tube travellers, but memorising the stops on the Bakerloo line whilst sitting in your living room does NOT prepare you at all for the brutal reality of the London Underground.  Having said that, I have not ruled out another trip at some point in the future!

Relief: a brief update

I’m happy to report that my visit to the hospital on Wednesday did not bring me bad news.  I was told that radiotherapy can continue to affect the treated area for some considerable time.  My reaction is not common, but thankfully it looks as if it’s not cancer-related.  Most of me feels very reassured by this.  I can finally relax knowing I don’t have to undergo any more treatment.  Yet there is still an anxiety inside me which persists.  Somehow I just can’t accept that the cancer has gone, or that it won’t return.  I wonder if there’ll ever be a day when I feel totally free from cancer.