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Continuing my testimony of transformation, hope and healing from earlier post.
“You must have shadow and light source both,
Listen, and lay your head under the tree of awe.”
Rumi
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Before I can begin my story proper I should fill in some of my back story
and let you in to at least some of the darkness.
I promise not to linger here any longer than necessary;
just enough to set the scene in preparation for the extraordinary,
demonstrably powerful,
light of healing.
The part of the story that matters here began when I was around five years old
and developed a tell tale butterfly shaped rash on my face,
which with other symptoms, signified
lupus erythematosus
I only retain three vivid memories of this time.
Above all else I remember the intense burning of the skin on my face,
then there is the picture of a bevy of white coated men standing in a semi circle around me
talking about me as I sit perched on something that feels a long way off the ground
in the middle of a shiny sort of room.
The third memory is to do with Miss Protheroe.
She was our fearsome infants' school head mistress
and I can see her now on the day she bore down on me as I played in the sunny school yard.
Her mighty bosom billowed over my head as she caught me by the hand
and wordlessly stumped me along to her office.
I wondered what I was in for.
The shady room was a cool caress to the red hot patches on my face,
even as I quaked with anticipation of what was to come.
To my surprise she sat me down and produced a large fluffy powder puff
covered in some white dust she explained was boric acid powder
to soothe my "poor face".
Far from being soothing, the boric acid powder
seemed to increase the scorching irritation of my skin;
my fear of Miss Prothereoe it forever eased.
Thinking of it now I realise there is a fourth memory.
Forming a background to everything else was my mother's distress.
I don't know what she had been told back then,
but time was to tell that lupus pointed to a faulty immune system
which could not be mended.
I have no memory of my recovery or the disappearance of the rash,
I do know how the subsequent years were marked with frequent illness.
My mother used to joke that
if somebody with something wrong only passed the end of the road
I would catch whatever they had.
For me it as no joke to miss week after week of school,
returning to find the intensive grammar school programme had moved on so fast
I was forever scrabbling to catch up.
As hard as that was,
harder still was the constant sense of isolation when
on each return
hard won friendships were
lost to newly formed cliques.
The desperate exhaustion, and painful joints
which had become part of my life
flared into something more serious
when I was sixteen.
I was diagnosed with sub acute bacterial endocarditis,(SBE),
whisked into hospital, and began what I did not then know was to be
two bed bound years.
These days an intensive course of medication would probably
be deemed enough to combat the infection,
but back then as well as the antibiotics, analgesics, and steroids,
complete bed rest was believed to be necessary to alleviate heart damage.
I think most patients on a public ward would agree
above and beyond our own symptoms and fears for ourselves,
being surrounded by the sickness of others
is the most scary and depressing thing of all.
It certainly was for me.
At first I was in the feverish stage of SBE,
too sick to know or care about where I was
or who my fellow patients were.
Despite the large doses of analgesics the intense pain in my joints was ever present,
and through my haze of fever and medication
I could hear a constant metallic syncopation going on in the back ground.
Then it dawned on me
my heart was racing so hard
it's rhythm was carrying through the rigid
hospital mattress to the metal bed frame,
setting up a constant
clacking.
I had my own personal castanets!
To be continued