Friday, March 13, 2015

Are we dying or living?

It is a somber realisation that some people donate to animals more readily than to their fellow man, that an image of a sad, bedraggled dog gets more clicks than a beautiful boy whose life is not quite going to plan.  I understand, however, why this is the case.  People give to charities that they feel passionate about, to causes they understand, to plights they relate to; they give because they can, with no harm meant to those they do not support. 

This post is not about charitable giving.  It is not a discussion of the questionable tactics used by Alex, Harrison's dad - on which I have previously written - for he is  a man who shows that his love is deep and will "do whatever it takes to save him (Harrison)".  This is about the portrayal of illness.

Duchenne - just like SMA - is a life-limiting illness with many uncertainties and unknowns.  Despite this many live their lives joyously, abundantly and with hope and fun in their hearts, experiencing all that the day to day can offer.  They choose not to focus on death - death comes to us all - but on life because if they focused on death, quite simply, they would forget to live this one wild and precious life they have been given.

Advertising and media campaigns come and go, and who can say what the life span of a blog post is?  One thing is certain, however, our words echo into eternity; we will be remembered for our words.  

I wonder how Harrison feels about his father's words?  I wonder if he knows that he is dying a slow, painful death?   I don't know how much Harrison knows nor how much he understands, but I do worry that such a negative and desperate picture is being created - not only for Harrison but for others with duchenne and similar neuromuscular conditions.   

I worry that one day Harrison will be approached by someone at school and taunted repeatedly, "you're dying! you're dying!" because of a newspaper left lying around.  I dread he'll one day see, inadvertently, the advert and fear his own untimely death.

We do not know when death will come.  We do not know what death will bring.  We do know how to live and we need to hold on to that, encouraging others to affirm life too, disability or no disability.  Those with duchenne - and SMA - live first and foremost with their conditions. Life is for living: it's really not all doom and gloom.

The most important thing in illness is never to lose heart.

Nikolai Lenin

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