St Mark's Fly

The discovery that the  tens of millions long-legged , bug -eyed, enormous creatures that have been pinging me , irritatingly  painfully, in the face, on my early morning cycle ride, are called St Mark's Fly, has set me thinking.

St Mark ,  who was probably called John, came from a socially elite family and possibly  the holiest home in the world, for it could well be his  house where the  Last Supper and Pentecost took place; yet   it's how   Mark  spent his life accompanying Peter and recording what he said , that I so identify with this Easter morning.

 I am not so much a "carer", as someone who accompanies Linda, my wife, on her lengthy, decades-long  journey  deep into the dry , crucified wasteland of Severe ME. How I have tried - yet to my endless frustration I cannot find the words to express the agony and torment that makes up EVERY SINGLE MOMENT of her life. I am the one who sees her wake up into agony, go to bed in agony and struggle through each day in agonizing moments,  unable to know what to do to cope.

This woman,  that I am so privileged to know, is a volcano  of determination, guts and courage; that is how she not only survives, but inspires  through her glowing  faith - I wrote in my journal yesterday what a mystic, a saint, as a matter of fact,  that she is . One day people will read her writings and notes in wonder. Right now, they ignore her.

Truly hers is the no-holds barred, naked, stripped faith of  St  Mark , Peter , John and such like. It has nothing to do with "religion" .Like them,  it has everything to do with encounter on her journey.

This woman is the reason why so many in the ME world : that world of egos and ineffectiveness,   have stopped speaking to us, for she will not compromise on the truth. She will not accommodate, for a second,  any   half measures , anything to do with the CDC criteria - shame on those that do - any naive bargaining  with vested interests, anything  to do with empty promises or death-making.  Her experience, her  powerful intellect and screaming body have`learned from bitter experience that time and time again, people with Severe ME are being let down, especially by those that should know better.

Not in her name !

Nothing less than a total and genuine commitment to the needs of people with Severe ME, which , let's face it,  is not widely shared, will do for Linda. It really pisses people off.

Increasingly isolated, we journey daily further and further into this  unbearable, stark, wanting  hinterland, her and me. Except we can't walk. I try and find us some shade in the shadow of a baking hot rock, while the horizon seems to  retreat ever further away. Scientists, medics, are celebrated ;  we hang on their every word and quote them faithfully; but what do they know of this place ?

The silence of the patient and carer  voice on ME conference platforms still remains as  deafening as ever, a testament to condemnable  priorities. No wonder we are going round in circles.

Linda , a fly called St Mark and me.....

Founding the African Church was the last straw, they stoned the old man, threw him,  St Mark ,  into prison, burned his body , they hated him so much.  Prophets,  sufferers; they  are always the outcast.


Popular posts from this blog

When I am 64 and other false positives : The PACE Trial.