But I have to cope, don’t I? It might be all the control I have.

I feel as though I can barely cope, at the moment. This is not a search for pity, though; more an attempt at catharsis and bearing witness by personal account – personal being something I normally avoid, here…

Last week I was hastily dispatched to my ‘local’ A&E with a suspected stroke, where a tired, pressured and rushing assortment of wonderful medical staff showed a high level of concern. Turns out it’s Bell’s Palsy, which is surely a relief, relatively speaking, though it didn’t seem to much diminish their concern and care for me.

Actually, Bell’s may not be life and death but, on top of my long-term underlying health condition, its subsequently increasing list of secondary problems, on top of the fatigue and chronic pain.. having a paralysed left side of my face and the high dose of steroid treatment they advised is exacerbating existing problems and adding many more. I am having to fight harder, with every minute, not to feel utterly and irrevocably miserable. I want to curl up and sleep until I’m better. But better hasn’t ever really shown itself and I’m not getting younger. Plus, I have never been very good at curling up. Likely more animal instinct for movement than a quality of good character, however…

Stress and vulnerability to more stress plus decreasing personal resources to cope with a rapid sequence of challenging physical, mental and emotional trauma is taking its toll. And I’m not even in the high stakes band of disability. It’s not a competition, I know but my heart breaks for them and my awe knows no bounds.

I am, though, in a greatly weakened state, after more than a decade of coping with the consequences of my physical condition; with getting by, far too much, on bloody-mindedness and adrenaline – and then with negotiating the Con DWP’s hoops. I’ve lost count of the number of times I’ve blamed myself for not being capable; for being more burden than use, to both loved ones and Society. How many times I’ve pushed myself beyond a safe, manageable pace, as if I still needed testing!

When I got home, from the hospital, a mere six hours later, my PIP appointment was on the kitchen mat.

At the doctor’s check-up, yesterday (for the Bell’s), my GP – he’s not mine, of course: a personal family doctor is the stuff of my childhood – well he was equally concerned with the stress and vulnerability and poorliness I was displaying. He asked me if I wanted to try antidepressants. Really, Reader, apart from the fact that they and other useless drugs were once prescribed to me for the purpose of physical pain relief, with quite disastrous consequences, the last thing I want to do is give the PIP assessor an excuse to herd me into a new category of tickboxes, with a whole other set of nasty and arbitrary assumptions, hoops and conditions attached. I’m just too frightened and suspicious, now… I tell the doctor that I may or may not be clinically depressed but that I’ve never sought diagnosis (neither has such been offered) because, all things considered and, when I am not so generally overwhelmed by feeling low and rather extra poorly, my natural state of mental and emotional well-being are probably as good as can reasonably be expected; that my responses to my personal life conditions are surely normal/natural and that any depression is more of a secondary complication, just as are the teeth I have literally killed by clenching as a constant brace against pain. “Yes,” he said, “all things considered”.

But I have to cope, don’t I? Keep carrying on. It might be all the control I have.

Poor Iain Duncan Smith

Oh, Iain Duncan Smith,
Poor you,
Being bullied by “spin, smears and threats”
Aw, boo hoo

Distressed by gratuitous scaremongering, are we?
Pressed your sensitive button, have they?

Feeling threatened by the consequences of
Making “desperate and unsubstantiated” claims?
Has your penchant for the “biblical” been usurped?
Ha! Do you see now, how the irony works?

Oh, diddums
Why so weak?
Can’t you cope?
Stiffen those sinews: where there’s Life, there’s hope,
Remember?
Try harder. Pull yourself together, man.
More smiling; less shuffling
More effort, please.

Do you need a hand up? Try one of those
“Series of highly questionable dossiers”
You cling to. They’re the new hand out,
Available at all recommended public service outlets

A team of scapegoat therapists will draw you up a plan
Happy to strip you of any reasonable doubt;
Coach you, what you must and can
And medicate you meek, messiah man.

To Iain Duncan Smith

Mr Iain Duncan Smith,

About this “shake-up“. Could you please find me a job that is tailored to my abilities whilst maximising my potential; one that pays me enough that I could live, not just independently but well; sufficiently that I would require no top-up credits. Of course, I’d still need to retain the gateway awards that I was once told were indefinite and unconditional (such as my DLA and Blue Badge); that recognise how my disabilities are not going anywhere, no matter how cross and determined you are that they will. I apologise for the way my life has unfolded so unhelpfully for everybody – including me – however, I don’t know what real and beneficial work I can do that will be meaningful to Society, will end any State dependence, won’t compromise my health and will satisfy your self-righteous values and relentless need for me to justify my monetary worth within your stupid socio-economic model.

You know that bit where you say “claimants should be made to take up any work they can, even if it is just a few hours”? Well I need a job that I can do as and when I have the physical and mental resources which fluctuate, daily, according to exhaustion, pain level, concentration, the day’s commitments, your downward pressure and my subsequent social anxieties and, consequently, mood, capacity, vulnerability and efficiency. I tend to have problems – even on good days – with travelling, sitting at a desk, walking and standing and my body is deteriorating, generally and specifically – my hands, most recently, to my great distress – from years of coping with my limits and, naturally, I’m not going to get any younger, either.

I’m probably not worth the time and money of an employer who wants me at a shop till or at a desk at a call centre or inputting data, say. And my days of being a cleaner, care-worker, etc are way behind me, now. Don’t get me wrong: I’m not ‘above’ such work – I’ve done many different jobs – but the idea that I’m suitable or capable now is silly. And the notion that it’s worth the financial cost to try to enable me to do such work for an hour or two, here and there, is laughable. I’d really love an actual career but I reckon I may be a bit long in the tooth, now and that the training, itself, would likely be physically inhibitive. Besides, there are plenty of young people who need the start far more than Society should need me to compromise my health further and inevitably cost everyone more as I prostrate myself to prove my sorry lack of market value.

You know that bit where you talk about “a system focused on what a claimant can do and the support they’ll need and not just what they can’t”? Well, my best skills are now reduced to the erratic ability to communicate what is in my mind with a certain amount of eloquence. So, if you mean it about the personalised help and support then perhaps you could fix it for me to be paid for the reading, observing, thinking and writing with which I have primarily learned to content myself? I’m sure you know many who are paid handsomely for doing far less. My best times are indeterminate and unpredictable points within a given 24-hour period, according to the spoons I have, minus those I need just to get through an uneventful day. Take them away from me and I will be a husk.

I’m not saying that there’s nothing I can do, at all or that I think I’m not a worthy human being. I’m saying I can’t jump your petty false-economy hoops and that I’m worth more than that. We all are. And I’m not saying that I’m more special than anyone else, either. I’m saying it has taken me a long time to create a productive life that I can bear, with the resources I have and that my well-being is more important than your shameful social experiments. I’m telling you that I think I would rather die than live the empty life you would prescribe for me. I will not be a scapegoat for your ignorance.

Too much here

Be in the world but not of it
As matter fixed
Though spirit be not bound to here.

But, what, then, of the days
When you feel so much
Of the world and yet not in it,
That the spirit follows limit
Into hollowed ground to disappear?

Not ready

Guilt
For all the skills I had
To teach until my fate
Made future come too
Late

And I was not ready
To be such a weight

Didn’t see it coming

Nor the friends going
As I transitioned from
A friend indeed to friend
In need

Leaden with
Responsibility and
Sorrow breathing in
And out with me

How every failure,
Every target unassailed
Is both mine and my
Owns’ to bear

But they were not ready
And now there is catching
Up for them and waves of
Overwhelming uselessness
For me

“Can you bring the coleslaw?”

I could go for days
With just me
For company
And sometimes
Wish I could
Alone is good
No inspection
No rejection

Sitting in a room
When all is trivial
Chatter
An endless stream
Of stuff that doesn’t
Matter to me –
Small talk in
Small doses please

“Can you bring the coleslaw?”
Did my shopping the day before.
Online. Lucky to cover more than
One aisle these days.

Pressure

Cash and logistics
Shit: a physical trip
To Pesky Tesci’s

The kindness of a lift
Door to door
Someone to carry the
Basket.
And an extra, along
For the ride.

The car park’s different
They’ve changed
The entrance, too
“Oh, it’s been like that
For ages”

Shuffle along
Older by thirty years
In the space
Of twenty minutes
Falling behind
Panic
Unnoticed
Saving everyone
From embarrassment:
Check.
Relief

A tattooed- headed man
I’ve never met
Pulls along side
With an open smile
And honest eyes
“Would you like to lean
On my trolley?”

The joy of faith in
Human spirit re-
Affirmed
Both softens
And heightens
Lonely’s turn.

Spoons

When I wake to the day
And straight away
Feel bereft for the theft
Of my spoons in the night,
I must reset my pace
For the hours I face
And the fact I don’t keep
All my spoons in one place,
Is what lessens my plight
Though the day’s still a fight
And I grieve at the waste
Unless I stop pretending,
Surrender to fate and
Just focus on mending
And wait.

When I wake up renewed,
With all spoons am imbued,
I feel hope that I’ll cope
With the basics, at least –
Unless there’s a treat
Or appointment to keep.
I will try for an even keel
Mostly, unless I feel
Daring – spoons sparing.
And, if I succeed –
Which means no extra need –
I retire to bed with
A positive head.

My spoons are my wealth
For my life is defined
By the soundness of health
In my body and mind.
It is measured and treasured by
One simple goal:
That of having control
Just as much as I’m able,
But, oh! For a ladle
To hold in reserve that
Makes up for how much
I rely on my nerves.