Symptomatic

My chin juts forward pulling my neck into taut visible ropes of muscle, then swings abruptly to the left drawn magnetically to a target I cannot identify, my shoulder raises in a one sided swinging shrug to meet it. My head juts forward again, eyebrows forcing themselves up announcing a surprise I do not feel, and my upper body twists. The movements are spasmodic, violent and unpredictable. It is as though my neck has lengthened and all my joints loosened, my movements not unlike a puppet with an inexperienced puppeteer, disjointed and violent. The muscles that run between the joints strain to contain and control the forceful contortion, tightening into knots of pain as they contract and release.

I try to speak and it is as though I am verbally constipated, my eyes roll sideways and upwards, my chin juts forward again, my throat constricting. Words come out eventually but they are garbled, half strangled or they stutter out in increments.

When I try to rest my body rises suddenly and frequently off the bed, like a patient being shocked with defibrillator paddles. My eyes feel as though they are bugging out of my head, they strain to break free of the constraints of my eyelids, darting dramatically to the side or scrunching emphatically like a child learning to wink.

These symptoms built up over a few days last year before I realised I should probably go to the hospital. Since we get so many weird and wonderful and ultimately inexplicable symptoms, I have a policy of giving new oddities a few days to subside before I investigate them.

This one required attention though and when I attended emergency, the doctor asked incredulously why I had not come earlier. What I was suffering with was an acute dystonic reaction to medication, so acute that staff from far and wide came to watch me do the drunken uncle contortion dance in my seat while I waited for treatment. The treatment was a reversal drug, Cogentin, given intravenously in an injection. Problem being of course that the puppeteer refused to relinquish the marionette strings, so like a possessed or crazed patient, I had to be held down by two nurses, a doctor and my sister. And still I writhed, the spasmodic disco increasing in intensity until they pinned me down again to administer another injection.

The thing is, a decade ago, before I was ill, this series of disturbing neurological symptoms would have had me scurrying in a panic to the emergency immediately. But with hard won experience of sceptical, dismissive and condescending doctors, I avoid emergency rooms unless it is absolutely necessary. Even then I am loathe to go. Because when I go to the hospital despite the clear acuteness of my illness and whatever symptoms are threatening my life at that moment, the doctors put on their blinkers, become tunnel-visioned and refuse to see what's right in front of them. I could be having a heart-attack in front of them and they would simply raise their eyebrows at my theatrics.

I am now suffering my third bout of Dystonia. And I am not sure why the latest attack has happened. But how incredibly sad is it that, their behaviour, causes me to suffer unnecessarily rather than face their discrimination?

So instead of avoidance, I have decided in future to pose a few questions to my treating doctor/s. (Well in the case I can speak, otherwise I might just have to type them out.) Firstly, do they love anyone who is ill with CFS/ME? Secondly, if not, have they read ten or more research papers on diagnosis and treatment of CFS/ME in the last year? Thirdly, if their answer is no to both questions, how can they be so arrogant as to assume to speak with any authority on my illness? Their qualification to speak on CFS/ME is non-existent. It would be like a biologist attempting to speak on entomology. They are both sciences, but they are poles apart. And lastly, with no appropriate qualification I would appreciate that they reconsider their perception of my illness until they are better informed.

In the meantime I will suffer this contorted dance, symptomatic of acute Dystonia and I will dread the hospital and their derision, symptomatic of the medical industry's continued pursuit of ignorance of our illness.  Somebody investigate the cause of the symptoms, please and then we might find treatment.

Dance

When I was a tiny little girl I learnt that sounds combined into song, were for dance.  I learnt to feel the beat and move to it in simple sequences of motion.  Now that I am older and am too weak to dance I realise something else.  When I was a little girl I learnt what sounds meant.  I became so attune to foot falls as they neared and passed my room that I could tell you simply by the way someone threw their weight, whom it was.  The high pitched tinny false laugh, the forced insincere merriment before a blink changed it into something more sinister. The vibration of a door in its frame as it was forcefully closed the thump of a glass or plate on a bench.    I saw each sound as though it were a colour working its way progressively through warning signals towards a screaming alarm.

When I was a little girl I used to watch my ballet teacher and her words would float past me uselessly, but her movements spoke to me.  I understood each graceful move and how to move my body in mimicry.  There was a freedom in motion, a beauty in how the collection of moves created a moment.  Now that I am older and am too weak to dance I realise something else.  When I was a little girl I learnt what movement meant.  So attune was I to the facial expressions and body language of those around me that I could easily take the temperature of the room simply by observing for one moment.  I could no more ignore pain in someone than I could ignore it in myself. 

When I was a little girl and I heard the uneven heavy footfalls approach and retreat past my door, the slam of a cabinet door, the bang of a plate on the bench, the tight angry voice, I knew what that composition of noises meant.  My heart rate would escalate and all of my senses would heighten, my muscles would tighten, coiled and ready.  I would step quietly into the kitchen and listen for a moment.  Once I understood what the newest accusation or complaint, I would wade in.  I would cause a distraction and pull focus.  It was a different sort of dance.  One I’d unconsciously learnt the steps to.  Every night needed a different combination of steps and flourishes.  I ducked and weaved, spun left then right.  It was exhausting trying to remember the correct order and sometimes I had to repeat part of the routine just to get it right.

When I was a little girl, my heart got broken every day.  The soundtrack of my life was a cacophony of violent noises coupled with jerky stumbling movements.  At night when I retreated to my bed, tears would stream down my face and I would hug my pillow hoping tomorrow would be different.  That the harsh words that rained upon me, untrue and unkind, would stop their battering of my self esteem.  That someone would change the record, put on a different song. 

When I was a little girl, I lost something.  I lost the chance to be a little girl.  Now I look back and realise I was never really a little girl.  I was always a warrior in training.  And in some ways I am thankful, because had I not learnt how to steel myself against the unfairness of life, I might not be able to keep fighting.

When I was a little girl, the universe gave me what I needed.  I learnt the steps to every dance I might ever need to know.  I know the choreography of life.