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

The Hoover and Bag Go Forth!

I’m writing this post in some haste.  Trudy and I are embarking on an adventure early tomorrow morning which is making me feel electric with excitement and apprehension.

In November last year when life was pretty bleak I responded impulsively to an e-mail which was offering a discount on a Murder Mystery Weekend in Dunoon. 

I realised today that I have been wanting to go to Scotland for thirty-five years, so this trek across the border feels momentous.  Trudy and I have been told to arrive at Gourock Railway Station by 4.30pm tomorrow.  The whole trip has such a thrilling, mystifying, alarming uncertainty about it that I am almost beside myself. 

The sense of adventure is gripping.  I have no idea what to expect – or even if we will get there.  This journey is truly putting Assisted Travel to the test!  My public transport experiences have been so varied that I am prepared for anything.

I do not know anyone in the holiday group so that too is fuelling my imagination.  Who will be there, and what on Earth am I doing?  Whether I’m experiencing some mid-life crisis or latent travel bug is immaterial now, for I am all packed and about to go to bed so that I won’t sleep past the alarm (set for 5.30am).

No time to think about the whys and wherefores.  The Hoover and Bag go forth!

I Fought Apathy – AND I WON!

Apathy.  An insidious enemy.  It creeps up on you when you’re unaware, and then steals your ambition.  Apathy means you don’t take action even

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Image by tuxthepenguin84 via Flickr

though you have a voice in your head saying “Just do it”.  Apathy makes it acceptable to sit back and watch.  Apathy leads you away from the frontline and takes you into a world where nothing matters enough to fight for.  Apathy blurs your sense of right and wrong.  Apathy lets you dwindle into the everyday, and it tricks you into thinking that the mundane is momentous.

Apathy has been slowly smothering me for a while.  Last night I met it face to face and saw it for what it was.  Catching it off guard it had no pleasant mask to hide its ugliness, no excuses at the ready to make everything OK, and no tricks to fool me.  I so nearly succumbed to it that I consider myself to have had an extremely lucky escape. 

Apathy was telling me that it was fine not to go to Worcester University today.  Despite having fought to get a place on the Recruitment and Selection Training Course I convinced myself that getting there was too much of an effort.  I was comfortable with the idea of staying at home and pottering.  The excuses came tumbling in.  First it was public transport – too hard.  Then it was my lack of energy – how can I get up early, negotiate trains and buses and be expected to contribute to the group?  Next it was my self-esteem – they probably didn’t want me there anyway, and I’d be rubbish.  And believe it or not the weather came into it.  Too wet and windy.  It’s far easier to snuggle up in my warm flat and stay safe.  Apathy – you’re a crafty saboteur!

So why did I go?  The “Should I?/ Shouldn’t I?” battle went on until the early hours of this morning.  I was poised to ring in sick, but then something tripped a switch in my brain and my thinking pattern changed course.  What the hell was I playing at?  I’ve wanted this for a year, I know full well that completing this two-day course will open new doors for me, I have travelled to Worcester before and come back alive.  Apathy – I WILL NOT LET YOU WIN!  I began listening to the voice which was telling me I’d be proud of myself tonight if I forced myself to go through with it.  Apathy’s voice still nagged away lying to me that it was better to stay at home and not bother.  

As I pelted to the bus stop uncomfortably short of time, I could still hear Apathy piping up that if I missed the bus I should feel pleased that I’d made the effort in the first place.  I might even be justified in “patting myself on the back”.   Of course there was Action’s voice informing me that there was a train I could catch which would get me to Worcester in time.  I arrived at the bus stop with a bedraggled Trudy (the rain was spitting on us contemptuously all the way) and we both stood there panting and feeling miserable.   The dark grey sky was rationing out its beams of light so that the dismal atmosphere was intensified.  The wind relentlessly thrusted rain shards into our skin.  Apathy beckoned me home. 

I was two minutes late, and there was no sign of any bus.  Had I missed it?  I secretly hoped so.   I waited a further seven minutes before giving Trudy the “Forward” command to head back home.  But she refused to move.  Trudy had spied the bus rumbling towards us with “Adventure” billowing from its engine.  I could have cried with relief.  Trudy and I had beaten Apathy, and I was almost tempted to wave as we left it behind to get soaked in the rain.

As I had hoped, the Training day was incredibly worthwhile.  Trudy behaved herself on and off duty and won several hearts with those Labrador eyes of hers.  I felt part of the group and we had some refreshingly heated discussions about Equality and Diversity.  They were the kind of discussions that thrill you and set off firework sparks in your head – the kind Apathy detests.  Coming home on the train I felt truly exhausted to the point where I wondered if I would be able to walk across the platform at Hereford Railway Station.  Yet with the exhaustion was a satisfaction that still has not left me, for knowing that I fought Apathy and won has given me extra strength.

I have learned today (better late than never) that surrendering to Apathy is turning your back on Adventure.  Apathy might appear to be safe and neutral, but in fact it is toxic and suffocating.  Apathy will snuff out the flame of life inside you and dull your identity so that you forget who are are and why you are here.

English: Hereford Railway Station

Image via Wikipedia