A Basket of Toy Amputees

All dogs have their favourite toys, but unfortunately these toys are the ones whose lives are destined to be short and painful.  They must endure being tugged, chewed,  disemboweled and ultimately decapitated or mortally wounded.   Some manage to escape into the depths of the dog’s bed or under the fridge, but even these are eventually sniffed out to meet their fate.  It is never play time for a dog’s toy. 

When I trained with Trudy, my Guide dog Instructor warned of the dangers of giving dogs soft toys because their inner stuffing can potentially choke a dog.   Likewise if a squeaker from a toy becomes lodged in your dog’s throat it can be fatal.

I took note of my Instructor’s advice and endeavoured not to buy Trudy any soft or squeaky toys.  But Trudy is a seasoned thief, and it wasn’t long before I caught her stealing my own cuddly toys from the bedroom.  (Yes, I do love teddy bears, and frogs, and beanies..!).    My old favourites began to lose the shine on their fur and to develop a slightly bedraggled, manky appearance.  Occasionally I would discover one of them lying dead in another room.   In the end I decided that I would buy Trudy a couple of soft toys to play with under supervision.

Three and a half years later I have some gruesome scenes imprinted on my memory.  Last Summer for example I bought a large dog-shaped doorstop. One morning I was shocked to discover that Trudy had blinded the dog and totally defaced its snout.   I have had to remove it from my lounge because it is too disturbing.  Its empty eyes and ripped snout speak of dastardly deeds.  Was Trudy ensuring that the doorstop dog would never take her place as my Guide dog?!  Suffice to say that the motives of Labradors are not always clear-cut.

In addition to the eye-gauging incident there have been numerous spontaneous massacres resulting in limbs and heads strewn all over the floor.   Wads of stuffing have appeared in the most unlikely places.  Eyes, ears and tails are frequently left abandoned in the hallway.  Many toys have ended their sad lives in the bin.   But there are some characters which have been consigned to the Sick Room, AKA “The Invalid Box”.  These are the all-time favourites which have treasured memories embedded in their remaining body parts, and which I am unable to throw away.  The Invalid Box is a very macabre collection indeed.  Several of Trudy’s “Invalids” are in fact headless, and many are just a torso.   

Trudy’s Invalid Box is now bursting at the seams.  With this in mind I have reached a momentous decision.  I have decided to undertake a mammoth project to repair those Invalids which have enough body mass to tolerate a needle and thread.  I am hoping that Trudy’s excitement at being reunited with some of her loved-ones will overcome her critical eye – for the truth is I cannot sew to save my life.   In fact, I cannot even thread a needle.  But with the help of the RNIB shop (from which I’ve  purchased an automatic needle-threader), Amazon and Google,  I have high hopes.

Some of the torsos may find themselves attached to different limbs from before, and some may even end up with more limbs than they started with.  But Trudy (fingers crossed!) will be gobsmacked to see the return of such legends as Myrtle the Turtle  (the prize she won  at the Guide dog of the Year Awards 2011).  Myrtle unfortunately suffered multiple organ failure in the early Autumn.

If the Invalid Project is a success, I may progress to sewing up holes in my own skirts and darning my Trudyfied socks.  The days of asking friends to mend things for me could soon be a thing of the past.  That would really boost my confidence.  Who knows what lies ahead in the sewing sphere of 2012?  Watch this crafty space! 

 http://www.ne.nfb.org/node/576

  

Advertisements

Why I am Not a Minimalist

For years I used to admire the concept of minimalism.  Whenever I entered a room that was uncluttered, functional, aesthetically pleasing and devoid of “things” I longed to live in such rooms myself.  I even described myself as a minimalist for a while, hoping that the label would imprint itself on my brain and change my ways.  I still sigh longingly when I find myself in a minimalist environment, for I yearn for an environment in which chaos does not prevail.

Try as I might however, I cannot bend myself into the shape of a minimalist.  I love “things”.  Not for their material value, but for their sentimentality, their ability to ground me during times of uncertainty, their feel, their stories, their normality.  Having a Labrador with a rudder-like tail means that “things” come and go, and most weeks I find myself scooping up broken pottery or glass.  Although I often feel a tinge of sadness to see one of my treasures consigned to the bin, I do not set any store by it.  My “things” are earth-bound, and as such they do not have intrinsic value. 

The real negative when you like having curios around you is that it’s a great effort keeping your environment tidy.  When I get to the point where I cannot cross the floor of my lounge without risking breaking my neck, my heart sinks and sometimes I just sit on top of the chaos for days.  I’d like to blame the mess on Trudy, but in truth we’re as bad as each other.  While she’s emptying her toy basket all over the floor I am hunting for an important piece of paper and in doing so strewing possessions here there and everywhere.  If ever a television crew needs someone to recreate a first-class burglary scene, then I am the woman to do it!

I know when it’s time to take action because my visitors are forced to sit on foldable picnic chairs as there is nowhere to sit.  (Chairs will have been turned into tables at this point).  This means an emergency blitz is called for.  Blitzing my flat is a necessary part of my life and I probably have to undertake this unenviable task four times a year.  It can take weeks to sort through what I wish to keep and what I should have discarded three months ago.  Usually the black bin bags contain papers and magazines, but occasionally I sift through my “things” and manage to fill a bag destined for the charity shop.  There are some possessions which just become old hat and no longer have a place in my life. 

Order is something that bothers me when I do not have it.  I get annoyed when I lose things and resent wasting time searching for proverbial needles in giant haystacks.  Having a sight impairment makes losing things commonplace.  Here I can name and shame Trudy for her part in separating my gloves, hiding various items of clothing, walking off with keepsakes and sometimes eating up bits of paper and creating an interesting carpet Collage.  But I contribute to the chaos too.  My recent bout of depression necessitated the most mammoth blitzing my flat has ever seen.  I stopped performing everyday tasks such as washing up, recycling junk mail and putting away laundry.  So my flat quickly became a living rubbish site, which would depress the most optimistic person.  It became unbearable to the point where I would find excuses to be elsewhere.  I started hating my flat, and wanted nothing more than to find somewhere else to live.

At this point where chaos was not fun any more, I had to take matters in hand and regain some order in my life.  In my head I had a clear vision of what I wished my environment to be like, and I began to work at creating an infrastructure which would help me maintain everyday organisation.  So I bought storage boxes and bags, files and folders, and began painstakingly sorting through the heap of chaos.  As the piles of papers dwindled and a path appeared in the centre of my lounge, my spirits slowly started rising.  I’m trying to find a set place for everything, so that even if I have days where the burglars revisit, I can put my “things” back in their proper place once my unwanted guests have been chased away.

Some people might wonder why I don’t just get rid of all my “things” to make life simpler.  Occasionally I have done so, but inevitably my environment fills up again with oddities and quirky ornaments that make me smile.  Despite not being able to see colours I have a very vivid colour-based imagination, and this manifests itself in my environment. I do not worry about things matching or co-ordinating, as long as they have meaning.  I do not like having “things” for the sake of having them.  In fact I could name all my assortment of objects and explain what they mean to me.  My environment is an expression of my life so far.  I have things which were given to me as a child, souvenirs from local and far away places, as well as objects which have been loved by others before me. 

Once or twice an onlooker has summed up my environment as “junk” – and it may well appear so.  But as human beings we all have different likes and dislikes, and to me my junk is very precious.

So I’ve come to realise that my yearning for minimalism is actually a yearning for organisation.  A tidy (albeit lived-in) environemt frees up your head and creates a healthy springboard for your day.  My new infrastructure has not been tested yet, but I’m hoping it will withstand the next onslaught of burglars not to mention the everyday habits of resident human and Labrador.

My Phoenix will not let me die

I am not a particularly outgoing person, and three years ago you would have had to drag me into a room full of people.  Social ease does not come naturally to me.  Yet I have learned to present a confident persona largely as a result of my role as a volunteer Speaker.

When I trained with my Guide dog Trudy in 2008 I received the “Qualifying Pack” which all rookie Guide dog owners are given at the end of training.  One of the leaflets in this pack gave details about becoming a volunteer Speaker for Guide dogs.  Something stirred inside me and I wondered if I would be any good at it.  After all, I had started out at University wanting to be a Teacher.  I love the art of language, and to me a string of well-chosen words beats any fireworks display.  This  drive to express myself and communicate passionately with others left me in no doubt that I would end up being a Classics Teacher. 

But it was not to be.  Twenty years after my arrival at Oxford I found myself dwindling in a nursing home, afraid to be seen in public, unsure of who I was.  Losing my useful vision at the end of my first year as an undergraduate was the end of my world.   The disappointment of having to abandon my degree  left me in tatters, and I lost all hope of having a life.  The grief I felt took over my mind and dismantled my thoughts.  I was unable to function, and thus began my default career as a psychiatric patient.  I  seriously thought that I would never emerge whole again.  

But after many struggles which spanned twenty years I did emerge.   Somehow I reached the peak of the mountain, and my reward was Trudy.  Training with a Guide dog had been my dream since leaving Oxford.  I knew that a dog would free me from the confines of sight loss, so I had to get myself back on track.  At the time I did not anticipate that it would take so many years.  But Trudy was worth the wait.  When I trained with her I had been a resident in the nursing home for seven years, and never envisaged leaving.  Trudy literally led me out of the front door and showed me the world outside. 

So the leaflet in the Qualifying Pack renewed my sense of purpose and gave me direction.  I moved into my own flat and began to seize every opportunity to rekindle the life which had so nearly died inside me.  Could I really be a Speaker?  Why not!  I was extremely apprehensive, for my mental breakdown had stolen my confidence and given me a morbid fear of strangers.  Yet I knew that if I didn’t seize this chance I would probably never feel fulfilled.  I reasoned that even if it was disastrous, at least I would have given it my best shot.

I expected to have some training in Public Speaking before I was let loose on the public.  However this was not the case.  After registering as a volunteer for Guide dogs, six months later I received a phone call requesting me to give a talk at a nearby village Primary School.  I cannot properly describe the terror which took hold of me as the appointed day grew closer.  What was I thinking of?!  Me! The semi-reclusive blind woman with a cleft palate speech impediment, giving a talk to a schoolful of kids!  I always struggled being part of an audience, so how was I going to address one?

The dire scenarios tormented me for nights on end, but I forced myself to go through with it.  When the day came I was relieved to find that most eyes were fixed on Trudy throughout my talk.  I was speaking during Assembly to 90 children,  but thanks to Trudy the dreaded “spotlight effect” did not take hold of me for long.  When I finished my talk the children plied me with excited questions, and I felt so elated that I almost soared into the air.  I was alive and free! This first talk was sixteen months ago, and now I am averaging about three talks a month.  So in a very round-about way I have fulfilled my dream of becoming a Teacher.  The topic of Guide dogs is easily as thrilling as Classics. 

As I have grown more confident, my voice has ceased to vibrate uncontrollably as I’m speaking.  I forget that I have a cleft palate which affects my pronunciation of certain consonants.  Somehow I have learned to project out of myself, and the audiences I speak to rarely get to see the quaking nervous wreck inside the Speaker.  I would not say that every talk I give is a success.  Recently I came home convinced that my public speaking phase was over, and that I would never have the guts to speak in public again.  But I guess the Phoenix within me won’t let my courage die forever.  This week I gave another talk in Hereford, and thankfully I hit the right note with the audience.  The buzz from a well-received talk fires up your soul and you leap into the clouds feeling literally on top of the world.

One of my favourite books is Zorba the Greek by Nikos Kazantzakis.  Zorba’s dance epitomises the phrase “Carpe Diem” – seize the day.  His love for the moment and the simple pleasures of life, together with his incredible passion for music, has always struck a deep chord within me.  Zorba knows what it means to be free, and is desperate to teach others the essence of freedom.  One day I shall visit Crete and when I get there I will dance like Zorba.  Sometimes it pays to leap out of your every day life and risk the unknown.  Uncertainty gives rise to adventure, self-discovery and possible fulfilment.   If it all goes wrong and you find yourself heading over a cliff-edge, then you can always turn round and go back the way you came.

Tribute to a Painter

It’s Father’s Day, and this is my gift to my Dad, who lives on through his paintings but is no longer in this world.  My Dad graduated from St. Martins School of Art in London in the 1960’s.  My earliest childhood memories are fused with colour and the smell of oils and turpentine.  Brushes of all shapes and sizes, sponges, planks of wood, thick layers of dried paint, home-made palettes and mixing pots, putty and huge flat-sided pencils.  These are just a few of the things which were always there.

My Dad resisted commercial art because he believed it stifled creativity. Therefore he chose not to make his living as a painter.  For two decades he held numerous jobs in factories, and finally at the end of the 1980’s he joined the Royal Mail as a sorter in one of the main London Sorting Offices.  Despite his physically demanding jobs he devoted his spare time to painting.  If he wasn’t painting he was sketching, either with charcoal or black marker pens which used to make my eyes water with their fumes.

When we were young children he worked night shifts so that he would have some time in the late afternoon to paint.  While he was working on a painting we were not allowed to see it until it was almost finished.  The completion of a new painting was always a very exciting moment for us.  Sometimes we’d come home from school and the latest work of art would be hanging on the wall to surprise us.  We’d stand round and gaze at it, often lost for words.  My Dad used to watch our expressions and although it was sometimes hard to find the right words, I never disliked any of his paintings.  I had my favourites of course, one of which has pride of place in my living room. (This is the featured painting at the beginning of this blog).

My Dad mainly used oils, so his paintings always took ages to dry and there were certain no-go areas in the house.  The paintings were very rich in texture, and I remember my Dad often struggled to decide when a painting was finished.  Like many creative people, his perfectionism frequently caused him sleepless nights.  The rough texture of my Dad’s paintings was fascinating to us when we were small children.  We didn’t realise it was intentional, and tried to be helpful by picking off the “lumpy bits” which defined the paintings.  My Dad must have known, but he never said anything.

My Dad was a purist when it came to colours, and for this reason we did not have a colour TV.  We mumbled and grumbled about this but he was totally unmovable on the subject.   Colours which were dull or “phony” were a constant source of irritation to him.

As he continued painting my Dad’s style became more abstract and expressionist.  His creative periods gained in intensity.  He often wished he could devote all his time to painting, but having to provide for a family of six made this impossible.

When I was a teenager he strove to exhibit his work at the Royal Academy‘s Summer Exhibition.  As he didn’t have a car at the time, he had to lumber his paintings across London on the tube, and always arrived back home exhausted and anxious.  It was a tense time for us all waiting to hear whether his work had been accepted for exhibition.  Sadly it was never to be, despite several attempts.  He used to go back and collect his rejected paintings alone, and the despair affected us all.  It was heartbreaking to see my Dad’s spirit crushed after setbacks like these.  Yet he never gave up.  He never wasted his spare time.

What grieves me most is that he never made it to retirement.  The free time which he worked and longed for did not arrive in the way he’d hoped.  In 1997 he contracted a progressive muscle-wasting disease which slowly took away his mobility.  During his final few years he was unable to use his hands.  The hands of a true  genius had lost their power.  The injustice of this still torments me.  My Dad died suddenly in 2008, and I miss him so much.

But he lives on through his paintings.  Every time I touch my treasured favourite painting with its familiar “lumpy bits” and hand-crafted frame, my Dad’s spirit spurs me on.  He was a man with ideals and he never compromised, even when things were tough.  His perseverance, endurance and selflessness remain with me.  There are so many things I could say about my Dad as a person, but this blog is a tribute to him as a painter.

My Dad might not have become a household name or exhibited at the Royal Academy, but his paintings will survive for generations.  He will continue to inspire me as long as I live.  

Going blind – what then?

Many people have asked me whether I’d rather be blind than deaf, or if I wish I’d been born blind rather than lose my vision at 18.  I never have much of an answer to these questions, as I can only deal with what I know.  For a lot of people, going blind is their “worst nightmare”.  I met this nightmare head on when I became a paid up member of the “blind community” in 1989.

Although I was born blind in one eye due to a condition known as coloboma/microphthalmia, this did not prevent me from attending a mainstream school.  I  considered myself to be more or less the same as my siblings and other children my age.  When I gained a place at St. John’s College, Oxford, to read Classics – I thought I was entering paradise.  I loved Classics, and still do in my heart.  But this is where my life took an unexpected turn.  During my first year I experienced a sudden onset of glaucoma and within weeks my useful vision had more-or-less disappeared.

I felt utterly helpless and at the mercy of other people.  For a short while I  tried to carry on as if nothing had happened, though reality came down on me pretty fast.  It was obvious that I could not continue at Oxford, so plans were made for me to attend the Royal National College for the Blind.  But I had no intention of readjusting or rehabilitating.  All I wanted was to see again.  That was my one and only mission.  Therefore I resisted all help and refused to consider using technology.  In those days assistive technology was fairly basic.  The BBC computers with early versions of JAWS had absolutely no appeal for me.   If anything, technology scared me –  I couldn’t even type my name.  Everything was beeps or bumps.  I wanted to obliterate beeping clocks and tactile mats.  They were reminders of my blindness and I pushed them away.

So my first days at the Royal National College for the Blind were pretty hellish.  There were some people who, like me, had recently lost their vision.  Others had never been able to see, and others could still see but not particularly well.  The thing I found most difficult was being surrounded by blindness.  It wasn’t a world I accepted.  I don’t even think I considered myself to be blind, I was just me.

Looking back it was the psychological impact of blindness that affected me most.   Accepting my situation was far harder than not being able to see the colours of my clothes.  As I’d never learned braille before, I did not take to braille easily.  I just about learned to read braille but I quickly decided that it was not going to be my main medium for communication. Expert braillists can read two lines at once with both hands, but they’re usually people who’ve started at an early age or really want to persevere.  I turned to audio technology but my brain resisted.  I’ve got a photographic memory, so I think visually.  I found that my good memory invariably began failing me, and this increased my frustration.  Even now I have to translate audio messages into a visual pattern in my head.  For this reason I left it about 5 years before attempting to listen to an audiobook.  The feat was laborious, and I found it hard to concentrate.  If this was how I was meant to “read”, I hated it.  But with no computer and no other means of reading I didn’t have an alternative.   Once I’d accepted this, I reluctantly started to borrow recordings from the RNIB library.  Now I can’t get enough.  With MP3 downloads and iPads, the audiobook scene is improving.

Slowly I became better disposed towards gadgets and technology, and now I’m gadget-mad.  The beeps that used to plague me 20 years ago are now my mates.  With increasingly advanced technology the practical problems of being visually impaired are less of an issue.   There are gadgets which enable you to safely make a cup of tea, label tins or files, measure quantities etc.  My talking microwave is the star of my kitchen, and my mobile phone with TALKS is my right hand man.  There are gadgets and aids for just about any indoor task.  Computer screen-readers such as JAWS and Guide have certainly transformed my quality of life.  My three year-old laptop is my launch pad.  The only barrier to the world is the growing number of websites with poor accessibility, but that’s  another story.. The down side of specialist technology/gadgets of course is the cost.  Being visually impaired is not cheap, and this is accentuated by the fact that in the UK the vast majority of blind people are without work.

So much for gadgets and audio technology.  What about the social side of life?  Before I qualified with my guide dog Trudy I struggled daily with the general public.  Unfortunately, most people steer away from  someone tapping a long cane on the pavement.  I am not that good at asking for help, so more often than not I encountered difficulties when I was out.  I used to bump into lamp  posts and apologise to them or ask if they’d please let me by.  When you’re blind and stressed lamp posts and humans are not distinguishable.  Making a fool of yourself in public is one reason why most visually impaired people refrain from going out.  I can laugh at myself now, but it took time.

I found that there were people who avoided me through fear, and others who raised their voices when they spoke to me. Sometimes people would think they were helping by grabbing my long cane and pulling it across the road with me trotting behind in alarm.  It seems funny now.  I’ve had so many disasters with public transport that it’s amazing I’m still in the UK.  I ended up at Heathrow Airport once instead of Victoria station.  These crises often bring out the kind and helpful side of people.  Nevertheless I began to see my long cane as a huge barrier when it came to socialising and being accepted by people.  Isolation is a common side effect of blindness.  I’ve lost count of the number of times I’m still talking to someone after they’ve left the room or wandered away.  Another favourite is to answer people when they’re not addressing you.  Not being able to read body language puts visually impaired people at a serious disadvantage in social situations.

I became quite reluctant to go out on my own, and often left my long cane at home.  This meant that people invariably thought I was drunk because I was stumbling along bumping into things.  There were times when I’d  get a taxi home after being out for just ten minutes.  I quickly became lonely and found myself retreating into a very dismal space.  Often I would lament the loss of my books and my academic career, and wonder why something which I loved so much had been snatched away from me.  These were the bleakest moments.

Training with a guide dog was something I had considered within months of losing my sight.  However, I needed to regain my confidence before I could manage a dog.  I knew that a guide dog was right for me, and GDBA have been a tremendous support ever since I first contacted them in 1993.  This support included hours and hours of mobility training and traffic skills training over a long period.

15 years later, in 2008, I experienced the happiest day of my life when I was matched with Trudy.  Trudy was worth waiting for.   At the time I was living  in residential care, and the outside world was a terrifying tangle of sounds and unfriendly people, and obstacles which rammed into your face and sent you sprawling on the ground.  But Trudy has shown me another side to the world.  Guide dogs attract people, so I suddenly found myself surrounded by well-wishers and dog-lovers.   The obstacles melted away into the background as Trudy’s job is to steer me round them.  I became eager to explore what I’d been missing for so long.  My blindness became an acquaintance rather than an enemy.

Three years later I am living in my own flat and giving talks to schoolchildren and adult groups.  I am about to begin lecturing at a local University.  Sometimes I look back over the rocky road and wonder how I got here.  It’s been worth the blood and tears just to feel this freedom.  But a guide dog isn’t the answer for everyone.  There are 4,500 guide dog owners in the UK.  But 180,000 blind and partially sighted people never leave home alone.  Not long ago, I was one of them.  .