Chapter 6
‘You can start getting out of bed a bit, now, Penny,’ Dr Chowdhury says to me the next morning. ‘Your oxygen’s up and your infection markers slightly down. Some encouraging progress for you.’
I smile and then wince. I might look better clinically, but the pain in me hasn’t read the memo yet.
Getting out of bed and walking across the ward, even to the bathroom, seems an impossible dream, something from a faraway land I once lived in, a time when nurses didn’t have to come with their bedpans and commodes, summoned by my red call button, when I need a wee.
‘The physio will be over later to help you with some clearance,’ he says. ‘And maybe a little walk, yes?’
I nod, but inside I shake my head.
The physiotherapist is an impossibly young, implausibly energetic boy named Dan.
He’s full of cheer and motivational soundbites, all delivered in a soft Welsh lilt.
I like him, but he’s exhausting and punishing on my frail body.
This morning he is more joyous than ever, bouncing into the bay and loping over to my bed.
‘Good to see some colour in your face! How’s that breathing? ’
I shrug.
‘Not so good still?’
‘No.’
‘We’ll do some clearance, if you’re okay with that, then?’
I nod.
I’m not really okay with it. He always claps my back until I feel bruised and battered, loosening the resistant mucus on my chest. He’s the most brutal of all the respiratory physios in here, but he gets the best results, so I have to be okay with it because it will help me get better.
‘Good. Let’s get started, then. On your right side first? That’s your worst, isn’t it? Lower right lobe?’
‘Mmm.’
‘Okay then.’ He helps me over onto my side, a slow process of grunting and groaning agony.
He grabs the bed remote and flattens it down, then pulls the curtains round so we’re enclosed together.
I close my eyes. ‘Just do some active breathing cycle first to get started, then I’ll do some percussion. ’
I breathe slowly. Shallow breaths. In-out-in-out-in-out. Deeper breaths, six of them, slow and steady, as far in as I can get, which isn’t far, even with the oxygen.
‘Good, good,’ Dan says, though it’s not really good. It’s a bit pathetic, really. ‘Same again, try and breathe more deeply on the second bit.’
Not going to happen.
I go through the cycle again and then he starts his percussion and vibration. It sounds like fun, when I think about it like that, like there’s a full brass band in here with me, blasting away the rubbish.
Not fun.
‘Okay?’ he says.
‘Kind of.’
‘It’s working well. I can hear it loosening. Can I keep going?’
‘Yes.’ I want to say no, but he’s just doing his job. Just grit your teeth and bear it, Penny.
When he finishes I am sore and exhausted. I lie there, unable to move, as he adjusts the bed and then makes some notes on my chart. ‘I’ll send that sample off to the lab. The doctor mentioned going for a little walk. How do you feel about that? Just to the ward entrance, perhaps?’
‘I… I—’
‘You not ready? It might help with recovery. Bit of exercise, get those legs working?’ His eyes are twinkling. ‘You might be able to get those sexy stockings off.’
I look down at my unattractive off-white hospital support stockings and feel my lips curving upwards.
‘Ah, see there, I saw a grin! We’ll have you up and about, you’ll see.’
He writes more onto his chart. ‘What is it you do, again?’
My heart sinks. Not that, again. The how-do-you-justify-your-existence question. I lie in bed and claim benefits, that’s what I do, and that’s hard enough, navigating the hell that is disability benefit applications and appeals.
I wish I could be like you, Dan, and bring meaning to people’s lives.
???
It’s a freezing January day and I am sitting in my car, shivering and wondering what on earth I am going to do.
I am at the centre for my work capability assessment for my Employment and Support Allowance claim but there are no disabled parking bays.
There are no parking bays at all. It’s on a main road and the driver behind me is revving his engine and flashing his lights.
By the time I’ve found a space and dragged myself up the road to the centre I am in pieces.
Inside the centre it is no better; it’s on the first floor, I’m told, and no, sorry, there’s no lift, there are the stairs dear, you can manage those can’t you?
I wonder why an assessment centre for ESA doesn’t have a lift, but I say nothing, like usual.
The assessor tells me she is a healthcare professional but doesn’t tell me which kind.
She watches as I stumble through the door, but makes no move to help, just waves to a chair and sits reading something on her computer screen, perhaps my claim form.
Her brow furrows, her mouth moving as she scrolls down the page.
‘My mum had bronchitis,’ she says, looking up at me.
‘Was nasty at the time, but didn’t do any lasting damage.
She’s a hard worker, she is, never takes a day off for anything.
’ She raises her eyebrows at me as if this random anecdote will somehow propel me out of my sickness, out of her way and straight back into work.
‘Not bronchitis,’ I mutter, enunciating the name of my disease slowly.
Her left eyebrow is cocked so high I think it might set there forever, a bushy question mark stamped on her face. ‘Oh. Never heard of that one, I must say.’ She says it in a voice that belies a great scepticism about whether this thing actually exists or if I am just making it up.
It sets the tone for the whole thing, with me trying to explain how it affects my life and her face set in a kind of incredulous disdain.
But I look fine, she says, I’m dressed and clean.
I don’t tell her about the tunnel of blackness I’m heading into, or the scent of sickness that weaves through my nostrils and wraps my body in its evil potion.
‘Can you cook for yourself?’ she asks, fingers poised in the air over her keyboard.
‘Well, yes, but only sometimes. I mean, I can cook, like I mean I know how to and all of that, I am bringing up a child on my own, after all. But some days… a lot of days really, I can’t actually cook at all.’
‘How do you mean?’
‘Well, I mean I feel so ill that I can’t get out of bed, or off the sofa, and even lifting a pan is painful.’
‘Oh.’ She purses her lips and I know I am messing this up. I know that I am not explaining it as well as I need to be, I know here and now this woman thinks I am some kind of lazy skiver who just slouches on my sofa all day.
‘But you can lift a pan – physically?’
‘Well, yes, but it doesn’t mean I can actually do the cooking with it.
I get so breathless, I have a lot of pain, it makes me bend double, it makes my head hurt…
I often have infections. Here.’ I pull out my repeat prescription to show her my long and complicated list of medication, but know she must have already seen that.
It’s on my form and it’s on the letters of support from my GP, my consultant, my physiotherapist, my respiratory team.
But I wonder if she’s really seen it. If she has really understood it.
‘Hmm.’ She waves it away. ‘And do you do your own shopping?’
I know that if I say I do she will say that I am well enough to work because I can get round a supermarket. ‘I do it online. I can’t carry shopping or walk for long.’
‘And how did you get here today?’
‘I drove.’
‘Oh! So, you walked a bit of a way, then?’ She looks up at me, the bushy question mark bristling with suspicion.
What am I doing here? Why don’t they believe me? I think back to all the advice I’ve been given: tell the assessor how your condition affects you, including on your worst days. Tell them what you are not able to do, because they are set on finding out what you can do to get you into work.
I can read the assessor’s thoughts on her face and later on I know I will see them writ large in the decision maker’s letter. Sorry to inform you…
And then the mandatory reconsideration. And then the tribunal, where the panel look on horrified at the poor decision-making and award me my support group Employment and Support Allowance.
Rinse and repeat.
???
‘I don’t have a job,’ I say to Dan now, staring at the soulless blue curtain behind his head. I am too exhausted to spin justifications this morning.
‘Oh,’ he says.
Oh. That’s about right. Oh. A woman of my age, a woman who should be earning her living, a single mum too – why not play into all the stereotypes while I’m at it?
‘Loads of jobs you could do, intelligent woman like you.’
Loads of bosses who wouldn’t want a weak, unreliable flake like me.
‘What did you used to do?’
Used to do? Used to want to do a million things, to travel, to write, to run, but mostly to paint and draw, to craft worlds apart from my own, to lose myself in great wide skies and jewelled depths.
I’m good at it, I know that. I almost managed it, for such a short time, in a job I was too sick to keep.
My tutor at art college said that I was talented, that if I was prepared to put in the hard graft I could go far.
You just have to believe in yourself, she said, because only you can make the decision to succeed in life, and you’ve been given a gift.
It’s all about attitude, you see, if your attitude is right then you’ll nail it, but if you give in to weakness then life will pass you by.
I lapped up her words, crossing my fingers behind my back, knowing she was right, I could do this if I really tried.
That word, echoing back through so many years of school reports; try. Just try harder, Penny.