Ear We Go!

IMG_0782 I am currently awaiting surgery for my fourth onset of a middle ear disease called ‘cholesteatoma’. http://www.nhs.uk/conditions/cholesteatoma/Pages/Introduction.aspx    This destructive disease is effectively a ball of skin cells which grows inside the ear eating everything in its path, including bone.  Nice!  Although the ball of skin cells resembles a large tumour it isn’t cancerous, but it must be removed surgically.

Most cholesteatomas are slow-growing but they do cause a lot of damage.  In my case the recurrent disease has destroyed my balance organ and made me almost completely deaf in my left ear.  The surgery I’m waiting for will cure the cholesteatoma but in doing so it will make my balance worse and leave me with no hearing at all on my left side.  If untreated the disease will eventually find its way into my brain, so surgery is my only option.

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So I’m in a strange position at the moment knowing that I’ll have an operation next year which could severely compromise my mobility and independence – at least in the short term.  My surgeon told me that I will have to learn from scratch how to walk and balance, without a balance organ.  With no useful sight, and therefore no visual points of reference to help me walk, I am quite nervous about what it will be like post-surgery.  So I’m taking a proactive approach in my preparations.

At the moment my balance is quite poor, and I walk as if I’ve had three too many.  I’m often stumbling and swaying, trying to counteract the effects of vertigo.  My balance began to deteriorate in March this year.  At first it unsettled my guide dog Dash, and he lost a lot of confidence.

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He takes his work very seriously and I think he felt responsible for my tumbles and stumbles.  So I had to scale back his harness work and rely on sighted companions to get out and about.  But over the last few months Dash has adapted really well and now walks very cautiously, checking constantly to see how I am.  He no longer gets overly anxious in harness, and if the ground looks uneven he’ll simply stop and wait for me to adjust my balance before continuing.  Dash has always had amazing intuition.  My Guide dog trainer has advised that we don’t go too far without accompaniment as I have had a few nasty falls which potentially put Dash in danger as well as myself.  It’s not easy adhering to this advice because a guide dog is essentially a freedom ticket.  So restricting our walks has been tough.  In September I learned that things are going to get even worse from the mobility point of view, and this was a real knock.

But I must find a way round it.  In Summer this year I met a lady with MS who was training with an assistance dog, and she mentioned that Guide Dogs were making her dog a special harness to help her balance.  I remember wondering at the time if this might come in useful for me.  Subsequently I have done some research and discovered that in the US (and increasingly in the UK) there are ‘balance dogs’ trained specifically to help people with chronic balancing problems. http://www.keystonehumanservices.org/susquehanna-service-dogs/balance-dogs.php

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In my view Dash has already stepped up, of his own accord, and helps me in ways beyond his guide dog training.  But I am going to make enquiries about whether his harness can be adapted so that I can use it as a stabilizer if needs be, when we’re out and about.

I have spent most of today researching walking aids.  I don’t need a walking stick but I do need something to stop me toppling over when I lose my balance.  This will help Dash to stay confident and keep us both safe.   But trying to find something discreet, aesthetic and useful has been really hard!   After much hunting I’ve come up with a Sabi walking cane http://www.designed2enable.co.uk/product/sabi-roam-sport-cane  and a tri support ferrule, which I need to buy separately. The ferrule has three flexible feet to make the walking cane even more stable.   I want something that I can hook over my arm on stand-by to access quickly if I start falling.

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This situation reminds me of when my sight was starting to fail and I was not safe going out and about without a mobility aid.  I was crippled with self-consciousness and hated every second of my first journey with a long cane.  I felt so blind, even though I did not think of myself as blind.  I suspect that my first walk with a balance aid will make me feel really disabled, even though that isn’t how I define myself.  But in these situations we’re faced with a stark choice.  Accept it, embrace it and get on with living.  Or deny it, hide from it and never set foot outside the front door.  If I don’t accept that I need to use a balance aid I will not be able to go out safely with Dash, and we’ll lose our freedom.  Having had a guide dog since 2008 I am not about to give up my mobility and independence!  Absolutely no way.  Someone said to me today that using a walking aid isn’t a sign that I am disabled, it’s a tool to enable me to carry on regardless.  And she was right.  We all need to make adjustments as we go through life and I’ve always felt that obstacles are there to get around not to stop me in my tracks.  So I need to put my philosophy into practise.

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Recently I spent a few days at the Calvert Trust activity centre in Exmoor http://www.calvert-trust.org.uk/exmoor/exmoor  taking part in a series of outdoor challenges.  I am by no means athletic but I completed every single challenge, including rock climbing.  The great thing about going somewhere like Calvert is that it reinforces a ‘can-do’ attitude and that ‘can-do’ ethos stays put in your psyche for some time. So back home in Hereford my priority is to get back into my long solo treks with Dash and find a way of overcoming my deteriorating balance.  My Guide dog trainer is visiting in a couple of weeks time so I hope to show her what Dash and I can do!  If she sees that we are safe when we’re out together then I am on the way to freedom again.

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My operation will not be soon, given the crisis that Hereford County Hospital is in at the moment.  So I am going to use the time wisely and prepare myself for what lies ahead.  So far on my list I have: Find out about adapting Dash’s guide dog harness; Start using a balance/walking aid; Make my home environment clutter-free and safe; Learn the Alexander Technique   http://www.stat.org.uk

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Standing By My Wife Through Her Cancer Journey (by Cameron Von St. James)

I was contacted in December by someone who wishes to share his family’s personal story.  This truly inspiring account written by Cameron Von St. James demonstrates the power of hope.  It has also inspired me to revitalise this blog.  Thank you Cameron.

Standing by my Wife Through Her Cancer Journey

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On November 21, 2005, my family’s lives changed forever. On this day, my wife Heather found out that she had malignant pleural mesothelioma. It had only been three months since we celebrated the birth of our first child, and instead of getting ready to celebrate our first Christmas together, our lives were heading into a chaotic period.

Before we even left the hospital, I knew that I would have an important job ahead. Caring for a cancer patient would be extremely difficult. After the doctor told us about mesothelioma, he gave us three places we could go for treatment. My wife was speechless after learning about her diagnosis; therefore, I made the decision to go to Boston under the care of Dr. David Sugarbaker, a renowned specialist in the treatment of mesothelioma.

During the next two months, we were living in a very chaotic situation. Heather and I both used to work before she was diagnosed with cancer; however, after her diagnosis, she could no longer work. As for me, I could only work part time. I had to care for my wife, travel to Boston, and take care of our daughter. I was so overwhelmed and often thought about the worst possible outcomes.  I was terrified of losing my wife and being left alone to raise a daughter who would never really know her mother.  On several occasions, I found myself breaking down and crying when I was alone.  However, I never cried around Heather because I knew she depended on me to be strong for her.

We were blessed to have so many people to help us. Many people would give us  both words of comfort, and financial assistance which we so desperately needed.  I was so hesitant to accept their help at first, but as soon as I let go of my pride and started accepting the generous offers that were coming our way, a huge weight was lifted from my shoulders. If there is anything that I would tell people dealing with cancer, it would be to take any offers of help offered to them.

Caring for someone with cancer is difficult, and most people will experience a ton of emotions; however, it is important to not let the fear and anger take control. By continuing to have hope, life is easier to manage.  It was the most difficult journey of either of our lives, but after Heather’s intense treatment involving surgery, chemotherapy and radiation, she miraculously beat mesothelioma, a feat so rare it is almost unheard of.
After this ordeal, I decided to go back to school to study Information Technology.  My experience as Heather’s caregiver helped prepare me.  I graduated with high honors, and at my graduation, I was the student graduation speaker. During my graduation speech, I informed the audience that I would have never imagined giving a graduation speech five years prior; however, by having hope and never giving up, people can accomplish more than they have ever dreamed of accomplishing.  Heather and Lily were in the audience to cheer me on, and that was the best reward of all.

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Tartan Trilogy : The Journey

I was up early on January 27th 2012 – well before I needed to be.  Whenever I undertake a long journey I have a rigorous pre-travel routine, which has become more complicated since  Trudy’s arrival on the scene.  On this particular trip Trudy’s kit took up more suitcase space than mine!  (Probably my fault for packing more dog food than necessary in case we got stranded somewhere).  The motto “Just in case” unfortunately determines most of what I pack when I go away.

Sight-impaired people often find public transport a real headache.  Travelling by train in the UK has been made easier thanks to station stops being announced on the train’s PA system.  It is not very often nowadays that we have to resort to counting stops or checking the time to ascertain where we are on a train journey!  But the noisy, smelly and busy platforms, crowded trains and huge gaps in between the train and platform can be off-putting.  As for which platform to go to and which train to board, that’s another mountainous obstacle.  Booking Assisted Travel beforehand reduces the stress of an unfamiliar train journey, but nevertheless it is not easy to put your trust in a “system “.

http://www.nationalrail.co.uk/passenger_services/disabled_passengers/

Hereford Railway Station has the most expert staff when it comes to assisting passengers who need extra help.  Down to a T, they are faultless.  Even so, until I was a hundred per cent sure that I was on the right train to Crewe I could not relax.  As it was early the train was quiet and I found myself settling back very quickly.  Trudy’s agenda was to hoover up beneath the seats and wriggle as far away as she could on the lead.  After she had licked the floor and eaten all the stray crumbs, she grumbled and curled up in a big lump to catch up on some missed sleep.  Labradors have it so easy.

Crewe was where I needed to change in order to catch the train to Glasgow Central.  When I had Googled Crewe Station a few days earlier, I was dismayed to learn that the station had 12 platforms and several cafes.  In other words, it was BIG.  This meant that as the train approached Crewe I became steadily more anxious.  What if there was no staff member waiting to meet me and assist me with the connection?  What if I actually missed the connection and never got to Gourock?  Suddenly my whole  life seemed to hang on making this one train connection.  It became my ultimate goal, my springboard, my future.  Crewe Station was Rivendell, Mount Olympus, Utopia, Paradise.  I had to get there, and equally I had to leave.  The Quest was gigantic and seemingly impossible.

On arrival, I was met by an extremely cheerful young man who took charge of my suitcase and bad me follow.  Off I went into the nether regions of Crewe Station, Trudy hoovering in the lead, completely oblivious to where we were heading.  It paid to be trusting.  In a few minutes I was comfortably established in one of the cafes I’d read about, relieved that at least I would make it over the border to Glasgow.  The chirpy lad was unquestionably sure of his trains, and that meant that I was sure too.  Ironically, I actually informed a fellow passenger that this was the correct platform for Glasgow Central – such is the ebb and flow of public transport!

The second leg of the journey felt like the real start of my adventure.  For one thing, I am so used to Arriva Trains that sitting in a train which was owned by a different company felt decidedly unorthodox.  It was like being in a stranger’s house.  This train was very crowded, and Trudy received far more attention than she had done on the way to Crewe. 

I could feel the tip of her tail thumping against my foot as one by one, people described her as “marvellous” and “beautiful”.  Her ear flaps were pinned back against the side of her head as she licked the cream off the luscious compliments.  She was the picture of stoicism  – the perfect working dog, saintly, bordering on smug. 

So when she dived into an un-manned crisp packet and virtually devoured the contents before anyone could intervene, the food crime appeared all the more shocking and unthinkable.  I was expecting a Tabloid journalist to tap me on the shoulder and berate me for “creating” a thief.  I felt the shame of a disappointed parent.  The aisle was narrow and there were people jammed in every available space, so Trudy’s intention to finish off her ill-gotten gains was harder to contain.  I succeeded in retrieving the crisp packet, only to realise that my hand and sleeve were covered in slimy, half-chewed crisp remnants fresh from the mouth of a Labrador.  I pretended I was not with her.  I was disgusted.  Trudy was disgusted too, for she wanted the crisps.  The atmosphere was a tangible bubble of bad mood.

Then we reached Preston.  I remember Preston because the train suddenly became colder.  This was my first awareness of being “on holiday”.  It was snowing outside, and I began excitedly sending texts to friends and family relating that I was at Preston, and “guess what guys?  It’s snowing!”  The PA system decided to pack up here so I rapidly tried to recall how many stations lay in between Preston and Glasgow Central.  There was a swift change of guard, and the new one was Scottish –  so we truly were on the way to Glasgow!

Having survived Crewe, I was not overly anxious about Glasgow Central Station.  I’m very glad, for this station dwarfed Crewe by far.  It was like a micro-city, with swarms of passengers buzzing hither and thither.  Thankfully the Assisted Travel was still up to the mark, as otherwise I would have disappeared into the underworld and never emerged again.  In Glasgow Station I giggled like an over-excited kid – I was actually over the border, out of England, venturing into another country!  My ears tuned into Scottish voices, some of which I could barely comprehend.  I slid about in my own  Englishness, for it felt totally inadequate in this environment.  I so wanted to add a bit of Scot to my identity!

My third train was a relatively short journey from Glasgow Central to Gourock.  By sheer coincidence I found that I was sitting opposite someone who was destined for the Murder Mystery Weekend in Dunoon.  Trudy actually introduced us and hence made the discovery  – in return for which I forgave her earlier food crime.  The Snout has its uses. 

Thus I reached my destination of Gourock Railway Station nearly seven and a half hours after leaving Hereford.  The smoothness of the journey gave me untold confidence when it came to returning home three days later.  Ironically this time I did miss the connection at Crewe which delayed my return to Hereford by over an hour.  The event was almost an anti-climax and I smiled recalling the anxiety which had plagued me just a few days earlier.  I can even whisper to the world that I think I now feel confident travelling by train.  “If there’s a railway station,” I heard myself saying to someone a couple of days ago, “Trudy and I can get there”.

The second part of the Tartan Trilogy (in progress) will recount the Murder Mystery Weekend itself – tune in if you dare!

http://www.nationalrail.co.uk/passenger_services/disabled_passengers/

http://www.guidedogs.org.uk/supportus/campaigns/talkingbuses/talking-buses-news/guide-dogs-discovers-the-forgotten-passengers/

 

Retreat of The Black Dog

I have so much to write about in Clairetrude’s Corner.  Some people may be wondering whether I made it to Scotland, or indeed, if I have returned.

Well here I am, in my Hereford den, poised to relate my adventures.  But the black dog has sought to hound me yet again, and that is why my WordPress Tartan Trilogy is still wrapped in its box in my cerebral attic.

I have stolen the black dog metaphor from Winston Churchill because I cannot produce a better one.  The hound appears from nowhere, hungry for your soul, thirsty for your life-blood.  When you wake up and espy the beast lying at your bedside you cannot escape from him.  Loyal as any hound, he follows you wherever you go, and finds his way into the core of your being.  In many ways you become the black dog which is haunting you. 

Shortly after my return from Scotland I learned that my grandmother had died.  I thought that I was coping fairly well with my grief until the black dog bit my ankles and brought me down.  Once I was on the ground with his hot breath pumping into my face, I could not get up again. 

Over time I have learned that the black dog is not something to fight.  He is stronger than I am, and could kill me with one snap of his jaws.  Whenever I feel those iron jaws upon me, despite my instinct to fight him off I must reach out to caress and soothe him.  As my fingers plunge into his black fur I know that I have to accept this unwelcome visitor.  For an unspecified period I will be sharing my life with him – a semi-feral beast who would not be averse to eating me for dinner.  If I allow him to stay and treat him with wary respect, I have a better chance of staying alive.  For being no ordinary hound, eventually he will tire of me and wander away.  The black dog likes to wander. 

As I write, the black hound still lurks nearby but he appears to be retreating.  As soon as I feel some space between the beast and myself I crawl onto my knees and examine my wounds.  The bites have been severe this time, but they are not fatal. 

I know that as soon as I regain some inner-strength and optimism he will slide away into the shadows.  When I become master of myself, I am master of him also.

So the Tartan Trilogy may well appear fairly soon if the black dog continues his retreat.  But right now he is still skulking between me and my mental archives, and I do not wish to lose my fingers.

Monday Melancholy Is On The Dole

 Monday – it always brings a flavour of melancholy as it peeps through the bedroom curtains.  Today’s Monday emptied an entire dessert spoon of gloom into my morning coffee.

I had to get up earlier than usual – never a great start to the day.  Trudy got up too, wondering if breakfast was going to be extra early.  After some tense anticipation she grumbled and slumped into her day-bed in the lounge.  How I envied her, lying curled up in all that fur just waiting for breakfast to be served.   

An engineer from the Housing Association was supposed to be coming to fix my shower which is slowly detaching itself from the bathroom wall.  So while it was still dark outside and the birds were feebly trying out their vocal chords, I was polishing taps and shower fixings, and almost got to the point of cleaning the floor.  But procrastination filed away that noble idea before it had time to flourish. 

I was told the engineer would arrive  “AM”.  According to the Tenancy Handbook, that can be any time between 7am and 1pm.  So I waited.  And waited.  And waited even more until AM turned to PM.  No engineer!   When I phoned to ask what was afoot, I was given no explanation, just an apology and a re-scheduled appointment for tomorrow morning.  The waste of an entire morning and the likelihood of a repeat performance tomorrow fuelled my Monday melancholy into despair. 

But today is one of those cold days with an icy sun baring its bald head in the sky.  So I decided to take Trudy to the park to give her a free run and to give me a blast of cold January air.  Even before I had reached the metal gate at the park entrance my spirits had risen in line with the sun.  The sharp breeze was flushing out my lungs and giving them new life.  I gulped like a goldfish to take in as much air as possible. 

Standing still in the open field which spans the bottom of the park, I felt invigorated.   Monday melancholy was insignificant here.  She began to lose her power and before long I could no longer sense her shadow.  Trudy was tucking into an earthy molehill, her back-end was vertical and her collar-bells were clinking rather than ringing.  When I whistled her she was reluctant to come, but eventually the prospect of a titbit was more alluring than a mound of earth and she bounced towards me with her ears flapping.

Within seconds she was off again, investigating some new scents which she had not noticed before.  If only I could learn from my Labrador and live for the moment.  No anxieties about the long-term future, no regrets about the past, just the here and now.  Something about Aylestone Park in Hereford always brings me back to the here and now.  There’s a magic in this park that stills Time, calms the spirit and frees the soul.

Minutes later Trudy came brushing by in the hope of another titbit.  I ruffled her fur, it was damp and smelt of winter grass.  Her wagging tail thumped against my legs and I counted the beats – one, two, three, four.  It was like a slow drum-roll at the start of a dance.  While we stood there together the ice on the sun began to thaw and I felt a warm glow drizzling over my shoulders.  I realised that I was truly happy.

When Trudy and I ventured home we were both transformed.  Trudy was tired and slow, and could only manage a very slight wag with the tip of her tail.  I was at peace and ready to start my Monday afresh, even though it was half past two in the afternoon.

As I write this, Monday has ebbed into the early hours of Tuesday.  Trudy is stretched out on her bed lost in Labrador dreams.  Before I start to slide into my own dream-world,  I thank God that I am alive.   

Thriving on Stage Fright

Stage fright is a sickening, draining, sudden rush of terror that causes our hearts to hyper-beat.  Stage fright steals our composure and threatens to steal our credibility.  Stage fright makes us feel as if we’re about to die, right there on that cursed stage.  Stage fright causes us to shake and sweat, to stumble and stutter.  Stage fright attacks the strongest man as well as the weakest child.

The feelings associated with stage fright are unpleasant, but that does not mean we have to fight them.  Neither does it mean that we need to avoid them at all costs.  I recently heard an established Comedian recount in a radio interview that he has died on stage a number of times.  That gave me heart, for I realised that dying on stage is commonplace yet it does not signify the end.  Death on stage is nothing more than a temporary phenomenon.  It only becomes permanent if we never stand on stage again.

As a volunteer Speaker for Guide dogs I have experienced dying on stage.  I have been so terrified that my whole body quivers, the sweat pours off me and I cannot control my shaking voice.  Yet even on these occasions the talks were not disastrous.  I have been incredibly moved by the spontaneous generosity of some of the audiences who have witnessed my raw fear.  So it is fair to say that success cannot always be accurately measured by our own perceptions and feelings.  I might consider a talk to be a disaster because I experienced terror, but the outcome of the talk may be extremely positive.  .

Giving a presentation or lecture is very similar to doing stand-up comedy. Both Comedians and Speakers seek to get the audience on their side and then keep them interested and entertained.  An audience is like a blank sheet of paper, and it is up to us whether we leave it untouched or bring it to life.

Experiencing stage fright  may well lead people to think they can never stand up in front of an audience again.  But avoiding the unpleasantness of stage fright is no solution.  Equally if we become confident in Public Speaking it does not necessarily mean that stage fright will never return.  Accepting that stage fright is normal, temporary and indiscriminate might help to restore  self-belief.  Experiencing it does not signify failure or incompetence, but succumbing to it by running away from it allows the beast to continue its reign of terror.

Stage fright is powerful and emotional, but that visible emotion could possibly captivate an audience.  My shaking voice which I know to be a symptom of my terror, has been described as passionate and emotional by people listening, and at times it has moved them to tears.  Is it possible then that stage fright can  help us to stir the hearts of an audience, or to reach people in a way that we had not anticipated?

This week I gave two talks to two very different audiences.  Both times I experienced the familiar symptoms of terror beforehand, but even though I could hear my voice quivering, stage fright did not dominate either talk.  The adrenalin buzz which raced through me afterwards completely annihilated my memories of previous  stage deaths.  I know that stage fright may decide to suffocate me in future, but for the moment I am enjoying my exhilaration. 

To thrive on stage fright we need to face the monster head-on, allow it to roar and even knock us to the ground, but walk away afterwards knowing that it has not beaten us.

Odd Talk – Beano’s Mummy

“Would mummy like a cup of tea?”

That was the question old Mrs Baxter asked Beano.  Beano was a great lolloping Retriever with a huge brush of a tail.

Beano’s mummy, AKA Harriet, sat a little awkwardly on the sofa playing with a ballpoint pen.

“Would mummy like a cup of tea Beano Weano?”

The question came again, this time with greater emphasis on the word “tea” which was drawn out into a trailing “eeeee”.

Beano’s mummy cleared her throat and said in a small voice that was not her own. “Yes, I think she would please Mrs Baxter.”

Mrs Baxter cooed and rolled up Beano’s ears into unnatural tubular shapes.

“Ah – would she?  And would mummy like sugar?”

There was a pause.  Not entirely silent due to the slopping noise which Beano’s tongue was making as it licked Mrs Baxter’s hand.

Mrs Baxter opened her mouth to ask Beano the sugar question again, but Beano’s mummy dived in with a slightly-too-loud “No thank you mummy – er, Mrs Baxter.”

“Ah”, sighed Mrs Baxter.

Beano’s mummy ferociously fidgeted with the ballpoint pen and tensed as the lid snapped off and flew across the room.

“What’s mummy up to?” Mrs Baxter asked Beano with exaggerated impatience.  “What’s your silly old mummy up to eh?”

“Sorry,” mumbled Beano’s mummy, reddening.

Beano gave his mummy a look of disgust, and she tried to signal to him that it was time to go.

An hour later none of them had moved.  Mrs Baxter held command from inside the walls of her upright chair.  Beano was lying nonchalantly on the floor.  Beano’s mummy was pinned to the sofa in an apparent catatonic state.

Suddenly Mrs Baxter’s ice-cracking voice boomed,   “Beano, does mummy need to use the bathroom?”

Even the air jumped out of its skin.  Beano’s mummy spluttered out the remains of her cold tea.  She stood up and pulled her skirt into shape.  She was flustered.

“Beano my dear”, she said hurriedly.  “Shall we let Mrs Baxter watch Strictly?   It started five minutes ago!”

“Say bye bye to Auntie Miriam Beano,” said Mrs Baxter kissing the Retriever repeatedly on his snout.  He turned away and fixed his eyes on the empty fruit bowl.

Beano’s mummy was at the front door.  She felt old Mrs Baxter behind her and half-turned with a broad smile at the ready.

“Come again soon love”, whispered Mrs Baxter.  “We always put the world to right don’t we.  I do so love our chats.”

“So do we, “ replied Beano’s mummy, tugging at the Retriever’s ear.