Hidden Illness, a poem in anticipation of tomorrow's guidelines

[Orchard33]

In the crowded margins of society

we live with silent sickness, ailing, slowly dying.

With this illness there is no absent limb,

cardiac arrest or stroke, not cancer

nor a dread disease, but a disadvantaged

sickness, fatal slow-burn like a quiet fizzing fuse,

symptoms general and disabling.

A normal result. No action required.

We languish, crawling, disappeared,

demanding, asking, pleading.

A normal result. No action required.

The rebuffs come, as we gasp and strain,

the walls of the citadel unyielding,

as gospel protocols and priests ordain:

No action required. A normal result.

Slavish dogma bestows our meagre ration.

We are not heard above the blood test din,

our suffering real but the numbers rule,

denial dealt like a trump card, punishing,

as we live lives, anxious, unaided,

outside the church where the gospels reign,

heretics, finding our way with our own kin.

Hope sustains, we work for change.

Camped outside the garrisoned church, its cruel edifice

stands like a guard between sickness and health.

High windows with shutters, closed,

small iron-clad door, bolted, keeping we raiders out.

We live on the edge, fire sling-shots at thick stone walls

and wait for the door to open.

Let's hope for a miracle with the new guidelines.

(I hope the post keeps the lines as they are intended to be.)

[Jillymo]

Very meaningful, heartfelt & well written.........

Well done. 👏

[Orchard33 in reply to Jillymo]

I hadn't anticipated such a quick reply@ I forget posts go out on the PAS website straight away. Thank you for your feedback.

[Wheat]

hello Orchard33, a very moving poem outlining our struggles. x

[OldmanD]

Nice piece of writing. . . . . Can we share to other media. . . . .

[Orchard33 in reply to OldmanD]

Yes, of course. Please attribute to Orchard33.

[Jillymo in reply to Orchard33]

I would love to see your poem published........Maybe on the bottom of the new guidelines. 😂

[wedgewood]

I agree with Jillymo

Should be published . So well expressed. I can’t imagine that our position could be better put . This is now the official PAS poem for me . Thank you so very much . 👍

[Orchard33 in reply to wedgewood]

Thank you very much. I'm touched and glad it speaks clearly about our travails.

[wedgewood in reply to Orchard33]

But it is so ELOQUENTLY expressed . I could have a b****y rant about how we are treated , but it would not count as much as your poetic artistry . EXCELLENT ! Thank you again .

[Orchard33 in reply to wedgewood]

And, of course, now it is published!

[wedgewood]

I keep reading it out loud , varying the delivery and emphasis on “ “NORMAL RESULT. NO ACTION REQUIRED “. Such a telling SENTENCE in every meaning of the word .

[Orchard33 in reply to wedgewood]

It has always struck me as very telling and gaslighting. It became a refrain I couldn't resist. And emblematic of how numbers take precedence over our experience.

[Narwhal10]

A stunning, eloquently written piece of work with artistic, symbolic flair.

[Orchard33 in reply to Narwhal10]

Thank you.

[J972]

That’s fabulous! Well done 👌

Depressingly, it’d work equally well on the thyroid forum 😢

[Orchard33 in reply to J972]

How depressing.

[FlipperTD]

Love it! Perhaps an upgrade from slingshots to a trebuchet, to lob pianos and such over the walls?

Well done.

[Orchard33 in reply to FlipperTD]

I like it. How desperate we all are and that hasn't lessened with a cursory scan of the new guidelines. I think the best of it was research into different kinds of administration that we can do ourselves which means another few years of waiting for the establishment to catch up with us. It reminds me of something Ghandi said: there are my people, I am their leader. I must run after them. I'm sure there's more of interest but I need a proper detailed read. I hope someone will provide a digest.

[Wwwdot]

Hi Orchard

Talent indeed. Very moving to read. The sense of futility comes over very strong as does an underlying sense of dogged determination to survive.

Does anyone know how to get this poem on the PAS website?

🤗🤗🤗

[Orchard33 in reply to Wwwdot]

Thank you.

[Loupharm]

nice.org.uk/guidance/NG239/...

they are out and this is the link if anyone needs it

[mountainice]

This is wonderful and so well put and I'm sure we can all imagine ourselves banging on the door to health with no-one listening, and also trying to get help for loved ones who don't understand what is being done to them ( or rather, not being done, by adherence to rigid guidelines).Thank you for sharing this with everyone.

[Orchard33 in reply to mountainice]

Thank you.

[AJackson21]

Beautiful poem. I love how it gets more complex as it goes on emulating how frustrating and isolating it is to live with!

I hope you don’t mind but you’ve inspired me to share a poem I wrote a few years ago about living with this kind of illness, isolated yet with that hope we all try not to hold too dear. We should make a B12D poetry book : )

“Eternal Autumn”

Daylight is dwindling

I watch through foggy windows

Rooted to the spot.

Through sunrise to dusk

Hopes and dreams drop weathered leaves

Waiting for snowfall.

When will it arrive?

The fresh white sheet a new page

Where snowdrops will grow.

[Orchard33 in reply to AJackson21]

Thank you. The longing is palpable

[Kowbie]

very good writing

[Sailinglady]

Thank you, I have shared (and attributed to you).