Dystonia

I am one of a group of peeps whom are living with a condition referred to as Dystonia – my particular flavor is Cervical Dystonia.  ‘We’ (Dr’s, parents, informed folk) have determined that I encountered this as either an injury sustained while being delivered from me mum or I’ve had it before then – so roughly my whole life.

While I wish I didn’t need to live with the condition (neurological in nature) I have adopted a living philosophy of “Oh well, what’s next?” as my driving message.  I can’t change my body out (yet) so till then I’ll have to make do with what I’ve been given.  The muscles in my neck pull my head and shoulder together (sometimes where my ear touches my shoulder).  It’s known that the nerves responsible for firing those muscles are over-achievers.  They decide to fire almost all the time – it’s just a matter of how much they want to get it on.

Aside from that, I’m also blessed with missing some muscles to Poland’s Syndrome (chest, shoulder) and live with FMS, a recently honored condition that for the longest time was thought, by the medical establishment, to be psychosomatic (re: you’re faking).  I’m on enough meds to make the average bear a zombie, so a good chunk of my energy is spent fighting through that to be productive.  It’s not easy, but I can only imagine those with the same issues 50 years ago – they must have been losing their sanity one day at a time.

Pain is a funny thing – it’s very much different for each person.  I have a very high tolerance for pain (thank goodness), but even so pain plays on your senses in different ways.  There’s the sensation of pain, of course – and it hurts like the dickens.  Imagine the average Charlie Horse cramp in your calf – transfer it to the neck and Bob’s you uncle.  Chronic pain however does it’s own business in your thinking – after a long period of managing pain, you begin to see the world in shades of ‘how bad will this upcoming activity make me hurt’ vs. how much enjoyment you might yield.  You tend to turn inward and shy away from social activity b/c you’re afraid you’ll get too bad off and need to bail.  You have an unbearable self conscious voice that wants to avoid being different.

Well, I am different – I’m a freak and not because of my body whose rejecting my will.  I’m intelligent and my ills can’t hinder that from expressing itself.  I’m creative and while it takes longer to produce works of art I will no doubt produce them just the same.  I’m compassionate, empathetic and loving – nothing can sour that.  I alone am in control of my thoughts, feelings and goals. My jacked up body can only slow my progress – it cannot stop me.