Monday, 6 May 2013

A Word About My Hero

I want to take a little moment to talk about my hero.  And no, its not Spiderman (though he is kinda cool).  Sadly, my hero doesn’t get the benefit of superpowers or constant adulation.  In fact they probably wouldn’t ever consider themselves to be a hero.   Like many people, I’ve never actually met my hero.  I didn’t really expect to come across them when I did and I doubt very much you will have heard of them.  My hero isn’t famous; they don’t appear on television, or grace the Houses of Parliament. They aren’t rich, or hugely successful in business.  No, My hero is an 82 year old woman named Sadie.

Sadie came to me at exactly the right time.  Four weeks into a hospital stay with Little J, I was exhausted and if I am honest, pretty shell shocked.  We had recently left the High Dependency Unit and were now sat in hospital, staring at white walls and waiting.  Waiting for someone to do something other than look perplexed.

Our ward was due to be renovated and so, along with every patient, piece of equipment and medical chart – we were on the move.  I pilled all of Little J’s bottles, clothes and toys into his high sided cot on wheels, popped the SATS monitor on the top and off we went.  A welcome break to the monotony of daily hospital routine.  Even more welcome was what we found in the new ward.  We had been moved from the loud, chaotic open plan section, to a smaller two person room - score. There was a big comfy looking chair in the corner that I could sink into – result.  As if sensing my tension release, Little J fell asleep across my chest – Unheard of.  I had a newspaper within arm’s reach – amazing.  It was a big, fat broadsheet – dammit.

Now I don’t mean to sound small minded.  I care immensely about world events and ever increasingly about the ins and outs of politics.  But in that moment, I really just needed to lose myself in an article about who would be the next X Factor judge.  No words with more than two, maybe three syllables.  Given that this was not an option, I figured that the magazines were probably easier going than the main body of the paper.  So, after an epic one handed battle against gravity, I managed to grab the entirety of the thick, heavy Sunday paper package and shook out the magazines hiding in the middle.  It was here that I met my hero.

The lead article in the magazine was focused on disability.  But I didn’t approach it with trepidation.  In fact, to begin with, I read it as an interested and compassionate observer.  It did not evoke a mental connection to the little boy whose head I would gently stroke as I turned the page.  The circumstances were so completely different to ours.  The article was about thalidomide.  It was following the stories of the now adults who were born with life changing disabilities due to a drug given in pregnancy.  Some of the stories were heart breaking.  They were tales of physical and social difficulties which had proven immensely difficult to overcome.  Some were uplifting and inspiring tales of triumph against adversity.  Then last of all, there was a picture of an old lady with her arm wrapped tightly around a grey haired man in his fifties. 

This image seemed different from the others.  The man’s eyes didn’t meet the camera; he wasn’t smiling for a posed shot.  It was clear that his disabilities were complex and most likely, cognitive.  But it was the old lady next to him who truly drew me in.  She wasn’t smiling either, but her image told me more than the paragraph below.  The physical discrepancy between her and the man I presumed to be her son was striking – he was bigger and stronger than her. But her mental strength shone through. He arm was wrapped around him protectively and lovingly in equal measure.  This was Sadie – my new hero.

Let me start by saying that I don’t know much about Sadie beyond this article.  This is purely my interpretation of her image and her story.  In fact, I hesitated in publishing this post, in case my interpretation is inaccurate, but I think Sadie’s story deserves to be told.  I hope if she ever happened across this post, she wouldn’t be offended by my perception of her.  I can’t link to the article, as it is not online.  So instead, I will just to tell you what the image meant to me personally. 

The most striking thing about Sadie’s picture was her expression.  It was stoic. There was an iron will.  Her eyes told you that despite her small stature, say a word against her son and you would hear plenty back.  But there was also softness.  A sadness in her expression that made it clear that the world had pushed her harder than it ever should, repeatedly.  But most of all there was pride.  Unflinching, unapologetic pride.  She was proud of her son, proud of her life.  And she had every right to be.  Her achievements are unbelievable and put me in my place every time I find myself feeling angry at the failings of the ‘system’ or the hurdles that world puts in front of us.  Sadie shows me what pure love and dedication can achieve and pulls me back before I trip on those hurdles and plummet into the territory of ‘bitter’.

Before reading this article, I had no idea that thalidomide could affect the development of the brain.  In the case of Sadie’s son, that was exactly what happened. At 82 years old, she holds together the walls of their house through sheer determination.  She gets up at 5am to do the shopping before her son wakes.  She cleans the house from top to bottom.  She rakes the garden, puts fresh flowers on display.  If you saw her in the street, carrying home her flowers, you would think she was an old lady from a bygone generation, off to make tea in a Formica kitchen and idle the day away.  You would be wrong.  Sadie maintains her house, keeps her flowers fresh to start each day anew.  In her words, ‘if we have a bad day, I just wipe it away, it never happened.’

I would love to say that I have the resolve and energy of this 82 year old when it comes to keeping my house clean, but I would be lying.  However, I totally understand her need for this order.  When Little J goes down for his daily nap I often become a woman possessed.  I desperately wipe, scrub and tidy.  I rarely complete everything that I need to.  But the things that I do, I have to do to perfection (I am obsessed with a smooth, wrinkle free duvet cover – strange, I know). The reason is not for ‘normality’, or to maintain a façade; it is a necessary process to maintain a sense of calm.  When you live with the fears and challenges that come with a disabled child, life is always a short step from chaos.  The simple act of pulling the duvet taught is a means to exercise control, stop us from spiralling.  Sadie and I are I from different generations and in many ways worlds apart – but we have so more in common than I would ever have expected when I first turned the page of the magazine.

Sadie also offers me a huge sense of perspective. Nowhere in the article is there any mention of respite.  Just a sentence to say that she feels no one else has been able to ‘cope with’ her son.  He has never been to school; she has been a carer day and night for over fifty years.  Sadie puts my whinging about a lack of local authority support into sharp focus. In a couple of years, I can send Little J to a supportive school environment, passing over the immense challenge of developmental responsibility for a few hours a day.  I get to live in the hope that Little J will achieve independence as he becomes older.  In fact, the more I think about it, we have so much in our favour that I rarely take the time to fully appreciate.

But I owe Sadie more than just perspective.   By comparison, I have a child who is not yet recognised by most casual observers as ‘disabled.’  But when I am asked questions about why he cannot do something, I think nothing of telling people.  In fact, I am probably a, ‘honk for special needs’ bumper sticker short of annoying.  I take it for granted that we have the right to walk the streets.  If anyone were to say anything abhorrent to us, I would retort with a hastily made up, but official sounding sentence about how they were breaching the Disability Discrimination Act.  This is the world that I live it.  Is there prejudice in it – oh yes, far too much.  But can we find our place within it – absolutely.  That wasn’t necessarily the case for Sadie. 

The world was a different place fifty years ago.  Reading through the various stories of families affected by thalidomide, the pressure to institutionalise severely disabled children is a recurring theme.  Fifty years ago, disabled children were even more marginalised and simply not a visible part of society.  I imagine for Sadie, raising a child with a cognitive disability, this must have been incredibly hard.  But she refused to give up.  She refused to let go.  She even had to battle within her own family.  When her son was ten, her husband demanded that she got rid of him, sent him away somewhere.  So she got rid of her husband instead. 

I inhabit the world that I do because of people like Sadie.   Because of her strength, passion and refusal to give up.  One of the resounding descriptions from the article is of her son’s room.  Spotless and cleanly laundered, with a chair full of teddy bears.  A symbol of the innocence that comes from a life without independence.  A room that fulfils his care needs, but with all of the touches that come from care driven by love.  It is the distinction between the state system and the care of a parent.  It makes me fear my own old future – not from a fear of being a carer, but from a fear of not being able to be one.  The fear of old age and illness that keeps carers awake at night.  Then I have to push that thought away, because it touches a nerve too raw. 

So, that is how I found my hero.  The person who gives me perspective and inspiration.  That magazine came home with us from hospital.  Sadie took up residence underneath our coffee table.  Every few weeks I would go to recycle the papers and sort through the pile.  Every time, I would go to throw the magazine away, then hesitate.   Sadie even made it through a house move.  She found herself a nice little spot in one of the boxes, between the pointless nik naks and unread books.  Every now and then, when I need a reminder about how much I have in my favour and how much I can achieve, I remember Sadie.

So, thank you Sadie.  I have never met you and short of some extremely unlikely act of fate, I doubt I ever will.  I am sure you don’t recognise the enormity of what you have achieved in your life. I am sure you don’t think you have had an impact on anyone beyond your immediate family.  But you have.  A Big one.

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