Principle Pains

I’m currently facing a huge dilemma.  I’m literally at a crossroads, unsure which route to take.  The choice of path is made more difficult by the fact that I don’t want to be standing here.  It’s cold and isolated.  The ground beneath my feet slices through my skin.  I feel far away from warmth and comfort, I am nowhere near home.

Home!  What loving pictures that word paints in my head, and how my head aches to be there.  My most pressing thoughts are to stay where I am in case an omen or idea should influence which path I take.  Yet the longer I stand here, the more my feet bleed from the shards of stone beneath them, and the more the wind gnaws at my bones.  If I never move, I will inevitably wither and die.  What should I do?

How did I end up in such a dismal place?  Are my convictions sound, or have they been muddied by my ego and stubbornness?  I wish I could separate my self from this quagmire, and fly ahead to judge the right path.  As it is I’m floundering in indecision.  But that’s not strictly true.  I know what to do, but cannot quite muster the courage to forge ahead.

It’s so tempting to go back to the place where I feel comfortable.  Do I really want to pursue this path into unknown territory?   I must have already made that decision, because I’m standing out here now.  I’ve left my comforts.  The question I’m asking myself is, can it get any worse?  Time will tell.

It is far easier to keep your head down and pretend injustice does not exist.  Unfortunately though, I’m one of those people who cannot keep quiet when I perceive that something is amiss.  Speaking out is sticking out.  You find yourself vulnerable and under attack from all sides.  That’s where my stubbornness kicks in.  Once I’ve made my views clear, I cannot back down.  Invariably this means I end up walking away or quitting.

That’s where I am right now.  Standing still in a post-resignation limbo.  There’s still time to go back, to knuckle down and pretend everything is in fact alright.  I could persuade myself and others that I was a little hypersensitive, or wrong.  But my conscience won’t have any of it.  Just when I’m on my way back it nudges me in the ribs and reminds me why I spoke out in the first place.  I spoke out because injustice cannot be ignored.  It boils down to a matter of principle.

Principle!  What a punishing pursuer!  How can you waver when it thrusts itself in your face?  Yet where is mighty Principle now, I ask?  Does Principle make sure I’m safe and warm, does he protect me from my antagonists?  Principle is utterly puny, now that I’m out here shivering, wishing I had never stuck my neck out.

And as I linger at the crossroads I can only lament what I have just thrown away.  Rewarding work, new friends, a healthy challenge, a chance to be truly creative, the knowledge that I was benefiting other people’s lives.  So much to lose for the sake of what?  Principle!  I could still go back.  But there it goes again, the stab of conscience.  It pierces painfully into my complacency before it even has time to form properly.

If  I could dump my sense of right and wrong at this  forked road, my life would be so much simpler.   I could rest easily in my armchair and never be plagued by miscarriages of justice.  I wonder how much of myself I would sacrifice in the process.  Would anybody actually notice if I deliberately left my conscience in this bleak place?  Would I emerge more carefree and easier to talk to?  My mind is wandering away from the subject of my present strife.

The truth is that I have decided to leave a post which was fulfilling hundreds of my dreams.  Why?  Just because I cannot stand by and watch someone getting away with being a bully.  My concerns are not being heeded, so I’m quitting.  As I write this I can’t help smirking at my self-righteousness.  But I am right.  Even if it turns out that I am in fact totally wrong, at least I know that right now I’m being true to myself.

That has decided it for me.  By walking away, I make sure that I remain intact and unscathed.  But how it hurts!  Doing the right thing can be so incredibly painful inside as you see your securities flying away like teapots in a storm.  I tell myself that in the long run I will benefit, but that’s little comfort right now.  Regret is making the pursuit of justice taste bitter.

Well, it’s almost 11pm and I’m facing my chosen path.  One look back towards the path I’ve just left, a few tears, and off I go.  I have broken free, but it’s too soon to tell whether I’m heading for happiness or gloom.

The Social Hazards of Visual Impairment

In my view being visually impaired is more of a social hazard than a practical one.  Most practical problems and dilemmas are surmountable, even if they require assistance from a sighted person.  Social difficulties faced by visually impaired people however, are on-going. This might explain why 180,000 visually impaired people in the UK never leave home alone.

There are no easy solutions to the social isolation and discomfort often experienced by blind and partially sighted people. I think that raising public awareness is a start.  Here follows a list of some everyday social hazards which visually impaired people often face.

1.  Bumping into and apologising to lamp posts and other inanimate objects when in a busy street/place

2.  Answering people when they are not actually talking to you – e.g. if someone walks by speaking into a mobile phone

3.  Continuing a conversation when the person you’re speaking to has moved away

4.  Entering rooms through the wrong doors and not being able to find the exit.

5.  Not being able to find a seat and accidentally sitting on a stranger’s lap

6.  Being unaware of having food-stained clothes/teeth, missing buttons or odd socks.

7.  Not being aware that someone is addressing you.

8.  Stumbling or tripping over objects such as cables or steps.  Looking like a fool.

9.  Not being able to recognise body language or read facial expressions.  Often tone of voice can be misconstrued.

10.  Not being able to tell how many people are in a room and where they are sitting.

11.  Dropping food on the table/down your top/on the floor and struggling to locate food on your plate.

12.  Finding yourself alone and separated from the main group.

There are several more examples I could add to this list, but this gives a good idea of the everyday social hazards which visually impaired people face.

Those who have been born with no sight may well have learned to express themselves confidently in social situations.  Research has shown that people born with little or no sight usually have excellent spatial awareness.  The human brain is able to convert audio messages into “images” which enable blind people to picture their surroundings from the sounds they hear.  But the older you are when you lose your vision, the harder it is to place yourself accurately in relation to your surroundings.  Statistically, most people lose their vision later in life so it is likely that a significant number of visually impaired people will experience social awkwardness.

As you can see, several examples on the social hazard list result in the visually mpaired person feeling that they look stupid, are the odd one out, or are excluded from a group.  In a busy social scene such as a Night Club or pub, people tend to move hurriedly with their heads down, more often than not chatting to friends.  This often leads to the visually impaired person being shoved aside or knocked, which is quite frightening when it happens out of the blue. If you happen to be holding a drink when someone bangs into you and it spills on the floor, there you are again – the accident-prone idiot who raises a laugh!  Obviously it helps to be able to laugh at yourself, but this is often a nervous reaction rather than seeing the situation as genuinely funny.  Particularly if someone has only recently lost their vison they may be feeling paranoid and vulnerable, and probably depressed.  Laughing at your own social blunders is not an easy thing to do at first.

A lot of visually impaired people I know find it very hard to make new friends.  Some have adopted an aggressive manner to deal with their social unease.  This means that people usually avoid them, which increases their isolation.  Some others feel unable to assert themselves in a group for fear of making a fool of themselves.  But it is not always about the unease of the visually impaired person.   Strangers often feel awkward approaching visually impaired people  either because they are afraid they might cause offense by offering assistance, or because they are afraid full stop.  My own experience has shown me that if you walk down the street using a long cane most people give you a wide berth.  Walking down the street with a Guide dog however has the opposite effect.  I have to add about ten minutes onto every route to allow for people stopping to talk.  Interesting, considering nothing about me as a visually impaired person has actually changed!   So it is clear that the social unease experienced by visually impaired people is exacerbated by other people’s reactions.  Put these  issues together and you haven’t got great ingredients for baking friendship pie.

I don’t think I will ever completely eradicate my social anxieties.  I readily laugh at myself and my faux pas, but if I’m honest I’d rather just fit in and not have to laugh at myself.  One thing which definitely improves with time though, is confidence.  Although I’m not an extrovert, I know that I can address a bus load of passengers if I need assistance.  My inhibitions do not control me, so I rarely end up in the wrong city nowadays!

Many visually impaired people are advised by professionals and friends to “get out there and make friends” to end their isolation.  Of course this is desirable, but it is never going to be straightforward.  Attending classes for example, poses its own set of obstacles. Unless the premises and equipment are accessible, the visually impaired person is  at an automatic disadvantage which means that right from the start they will be separated from the main group.  It can take a long time for a visually impaired person to feel established in a group and to make a contribution comfortably.  For many, the easiest thing is to stay at home.

But visually impaired people do have some distinct advantages in social settings.  These often lie in the subtle details such as what perfume/aftershave someone is wearing, defining laughs or coughs etc.  Unless there are medical complications, with practise it is possible to sharpen your memory and pay closer attention to detail.  Visually impaired people are often more susceptible to atmosphere, and more astute at detecting other people’s emotions.  Sometimes not having visual stimulus can fine-tune your intuition. Although you may not be able to tell precisely who is in the room and who passes by, you will probably remember who says what and at what point.

Obvious as it may seem, many awkward social situations could be avoided or diffused by simple verbal communication.  Most visually impaired people would not object to being asked if they need help.  It’s a  simple yes or no answer, and far more preferable to being stranded at the side of a busy road or in the middle of a room.

How to Feel Totally Free in Two Minutes

One day last week I experienced  what it is like to feel totally free.  Free from worries and concerns, free from everyday life, free from my body.   Although it was  not an outer-body experience as such, I literally did soar into the sky.

The Black Fly is a ride in the small(ish) amusement park  at West Midland Safari Park in Bewdley, Worcestershire.   This impressive man-made structure gave me the gift of pure freedom.  Some people may consider The Black Fly to be their ultimate nightmare.  It rears up into the air, spinning and tumbling in all directions at lightning speed.  A metal clamp is all that holds you in as you’re offered up to the gods.  You become pin-sized and insignificant as the die is cast to determine whether you live or die.

Whilst clamped inside The Black Fly for the second time I tingled with the thrill of abandoning myself to Fate.  If I were to die there and then, I reasoned, it would not matter.   All my fears surrounding cancer and its implications vanished.  I genuinely felt that whatever happened to me was immaterial, for I was truly and tremendously happy.

The screams of my ride-mates sounded shrill on either side of me.  As we raced with the wind, the wails of terror and excitement were tossed into the air.  I could feel the wind’s coat-tails fluttering against my face.  I inhaled and felt utterly intoxicated.  .But unlike my ride-mates I did not feel the need to scream.  In fact I was  paralysed –  not through fear, but ecstasy.  I wanted to stay there forever.  If only I could trap those two minutes in a jar and replay them for the rest of my life!

The world was far below me, continuing its relentless grind.  I really had no desire at all to go back to it.  I felt removed from reality, almost invincible.  Who needs illicit drugs when such an incredible buzz can be gained from a theme park ride?  I am now an adrenalin Junkie, and I’m intending to feed my addiction in a few weeks with a return visit to The Black Fly.

Having said that, the buzz which shot backwards and forwards through my entire body was not simply due to an adrenalin rush.  I honestly felt as if all my worries had been lifted away from me.  All I had to do was to sit back and let the huge metal pendulum hurl me through the air.

As I twisted and dipped over and over again, I was only vaguely aware that I was still me.  If it wasn’t for the ear-shattering screams telling my brain I was still among humans, I might have begun conversing with Angels.

http://www.youtube.com/watch?v=h_NRlcU5pqY

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.

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.