Hospital Staff and Patients: "I see you".
- by Jayne Pigford
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- 23 Oct, 2021
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I've just spent another six days of my life in hospital; a gut infection causing sepsis which sucked down my blood pressure to dangerously low levels and sent my anti-bodies into such over-drive that they started to 'eat' my blood-clotting platelets and red blood cells. (I have Antiphospholipid Syndrome, similar to Lupus/SLE. ) When I was thirty-one a similar process occurred, alongside having pneumonia, MRSA and mega clotting and bleeding issues; I was in hospital for seven months and given ten hours to live at one point. I've been an in-patient many times since then, sometimes talking weeks to get out, so I can't tell you how relieved I am to have been able to leave hospital so quickly and relatively unscathed.
I wasn't feeling relieved on my way to hospital; as soon as I was lifted into the ambulance last week the familiar flashbacks began, along with the terror. My life was now in the hands of a bunch of total strangers; I was powerless and helpless and that, let me tell you, is terrifying and the ultimate in vulnerability.
Is it any wonder that we patients make our doctors into gods and our nurses the perfect parents? We have to believe they'll be our shield against death, that they're infallible, totally there for us and beyond mistakes. Beyond Human.
And how can the doctors and nurses not identify with these projections? A doctor, chosen for her super-human qualifications, must be perfect or face annihilating self-criticism, and a potentially thwarted career, litigation, shameful investigation or even the devastation of being ousted from her 'tribe' after so many years of study, stress (which she's not allowed to acknowledge) and self-sacrifice. Yet of course it's impossible to be perfect and medicine isn't the exact, magical science we all like to believe, as I first learned with a shock at 31 when six doctors were huddled near my bed on the High Dependency Unit, unable to figure out where my infection was coming from and why my blood was clotting up and my organs failing.
A nurse must be the perfect compassionate parent; he signed up to be kind; it's his identity (let's face it, he doesn't do it for the money) and he wants to be a font of kindness and reassurance but he also has a thousand tasks to get through or his job will be on the line - and someone might die. As a patient I want him to listen to my fears, to tuck me in when the lights go out and I feel the overwhelming isolation and terror of a five-year-old; I want him to get to know me as an individual and care deeply about who I am. I want him to put his own problems, aches and emotional pains aside and focus on me!
I've spent thirty years observing GP's and hospital doctors and nurses - and physio's , radiographers, domiciliary staff, porters, and the rest of those amazing people - as they've worked like Trojans to keep me alive. And mostly my care's been incredible - but there have been mistakes such as the mis-diagnosis' of a DVT and internal bleeding, a 5kg drip box being knocked onto my head, being given medication which made me ill (eg Heparin Induced Thrombocytopenia) and being almost given drugs which may've killed me despite my telling the doctors I was allergic to them . It's a good job I'm on the ball, bringing what I know about my own body and medical history instead of just absolving myself of all responsibility for my own heath the minute I enter a hospital. The good doctors have allowed me to come to the table. and heard me. The god-doctors who needed to maintain total control, in the face of their massive pressures, didn't. The good nurses heard me when I told them I was in pain or they were hurting me; the 'parents' who wanted patients to be seen and not heard didn't .
So what to do about the power-crazed gods and the controlling parents? I could've complained and sued them but that didn't seem like the right thing to do when I knew the mistakes weren't deliberate - and were made in the context of mostly excellent care and the millions of pounds being spent to keep me alive. I guess I was also too scared to complain; I might have been resented and given less enthusiastic care...
Many mistakes made in my care were , I imagine, a lot to do with stress, exhaustion and having impossible demands due to too few staff and unreal expectations. When we're stressed out and in 'fight/flight/collapse mode we lose connection to our brain's front cortex - the grounded, compassionate, calm and rational part of our brain and become overtaken by our 'reptile' brain which is all about dealing with immediate danger; in this psychological state the patient may become 'the enemy', the pain in the arse who's being 'non-compliant ' because she forgot to take her morning tablets; a source of grief and stress. You feel irritated with her... and as a patient I pick up on your vibes and feel an idiot, a burden, afraid and shamed and in my fight/flight mode I may become argumentative and critical or slightly hysterical because I can't flee...
So here we are, a stressed god-doctor/nurse/physio etc and a pain in the arse patient and a scared patient and pain in the arse doctor, all stressed out and in direct opposition. No way can we work collaboratively.
So again, what do we need? I can't do anything now to keep myself safe and I'm freaking out...or can I do something? Well I guess I can take some deep, breaths, right down to my belly which will help me re-connect to my front cortex and get back to a place of being able to ask questions, be more assertive and regain my compassion. Then I can reminding myself that this staff member is a human being too; they may have just lost a loved one, been ill themselves, be worried about their child or elderly parent...I can try to soften my heart and re-connect to the person behind the uniform.
As a staff member I might take a few breaths too, encouraging the soothing, parasympathetic part of my nervous system to pull me out of my fight/flight mode, calm me down and reconnect to my front cortex and my compassion. I might also push for a different medical system where I'm not expected to be a perfect android who tries to impossibly contain the massive amounts of stress and emotion I carry from working with the sick and dying month after month and year after year, being haunted by trauma and death every day. I need structured, regular emotional support from my managers and my team; we need the space to talk, share, grieve and feel our terror and pain in order to work through and beyond it, in order to stay grounded and at our best. In order to avoid depression, anxiety , misery and even death; we know doctors have a much higher than average suicide rate.
The main thing we all need of course is our government investing properly in our amazing NHS rather than , it appears, running it down to justify privatizing it. But while we're stuck with a system bursting at the seams our best bet is perhaps, as both staff members and patients, to aim for reconnection when we've lost sight of one anothers' humanity; a mending of the ' interpersonal bridge ' of compassion so we can once again meet as two vulnerable humans who are trying to do our best in the face of stress and fear. We can notice our aggressive and judgemental thoughts, try to bring our stress level down with breathing and imagining our solid roots going deep into the ground and be strong enough to humbly apologise for any mistakes or harshness. We may even and share a bit about who we are to each other; meet as real - and equal - people who both just want to be safe, well and happy...
In my experience, when I feel seen and heard by my hospital carers I heal much quicker, physically and emotionally. Studies have suggested that the relationship between patient and doctor is absolutely paramount to recovery, and it's not rocket science that a medic/nurse who feels seen and appreciated is going to feel more energised and inclined to do their best for a patient.
So, here's to us seeing more than a pair of pyjamas or a uniform and connecting in our human-ness...
( Please see my book 'Rocking with the Reaper' on my store page; my account of dancing with death for thirty years and a call for more human connection based on neuroscience's revelations that we are actually 'wired to connect' and be kind biologically - as exemplified in our amazing NHS. )
Coping with Covid
Well what strange and devastating times we’re living in! I live alone and, being on dialysis, have been ‘shielding’ for most of the past year.
I quite enjoyed the first few months; I loved our new-found quiet and birds sounding like they had megaphones and I managed to finish and
publish my book ‘Rocking with the Reaper.’ Now though, I’m waking up regularly with a shaky heart and the first thought is generally
something along the lines of “Bloody hell, we’re in a mass pandemic and I have yet another day of no hugs or touch" and my body’s happy
hormones feel depleted from a lack of human contact. I'm usually pretty hyper, fitting as much as i can in a day, but at the moment, like many
of us, I feel like a sloth and can't be bothered to do much of anything.
But yet I’m just about coping and each day I get up, grateful for waking up when many thousands of people haven’t, and begin my day with the
intention of making the most of it, be that being active or resting. I also find the following helpful…
1) Being aware that my anxiety and sloth-like-ness is a perfectly normal reaction to a mass pandemic and facing the unknown! My
nervous systems know there's an invisible threat everywhere, so it's jittery - but can't do its usual 'fight or flight' to sort the problem out so
has slid into a kind of helpless lethargy instead... Sound familiar?
2) Keeping in mind that millions
of people share my anxiety, weariness and loneliness.
3) Reminding myself of how blooming lucky I am; I have the NHS behind me if I or my loved ones catch Covid and, compared to most
people in the world - and many in Britain - I'm living like a queen. Comparatively, my life is easy and I'm so blessed!
4) Consciously looking for the small things I’m grateful for too… blueberry porridge, a blue-tit, video calls, Netflix...
5) Practicing mindfulness
- focusing on my breath as a kind of grounding anchor any time, anywhere, checking out meditations and talks on U-tube
and becoming a ‘curious investigator 'of what's going on right now, inside and out.
- asking how does this feeling of loneliness/grief/devastation/anger/fear… feel in my body? ‘Oh…tightness in my gut, stinging
behind my eyes, a shakiness in my gut…’ This is a great opportunity to tune more into how different emotions feel in our bodies as well as
taking some of the sting out of difficult feelings. They are just physical sensations at the end of the day!
-noticing what my crazy, danger-focused mind's going on about. How are my thoughts adding to my stress and misery?...
Just noticing catastrophic thoughts can take away their power, especially when we know that things often seem worse and more scary when
our nervous systems are ‘wired.’
- putting the focus of my attention on my senses- how blue is the sky today? How fast are the clouds travelling? What smells
are in the air? How does the warm water on my body feel in the shower today? What can I hear? Mmm... what flavours can I taste here? How can
I bring a ‘beginner’s mind’ to my day and remind myself of my miraculous senses and the wonders around me?
6) Doing things that I know make me feel good - a loving-kindness or relaxing meditation, a walk in nature, yoga and stretching, online
exercise sessions (Joe Wicks does some good ones for ‘seniors’ if you’re a bit wrecked like me), a bubble bath, cuddling the hippo my nephew
bought me, listening to mindfulness teachings, exploring random things on the net, reading, drawing and painting,... & snoozing!
7) Making space to cry! I always feel better after a good cry - it literally releases sadness and anxiety hormones from our bodies. Often tears
held in lead to all sorts of trouble, including anger, depression and more sadness and anxiety... I find that i need a weepy film to get me going
sometimes, if i feel a bit 'frozen' (another of the body's reactions to stress and Covid. )
8) Whacking on some good music and allowing my body to move , stretch, dance, howl, bellow, bawl...whatever it needs to do.... (we
should be doing this in Market Square together...maybe one day! ...)
8) Trying to focus on just this safe, magical, alive moment....
...and doing all the above, in
true mindfulness style, with an attitude of kindness & compassion towards myself and others…
As I make clear in ‘Rocking with the Reaper,’ as I catalogue my health nightmares, over thirty years, there are still beautiful moments even
in the most dire of circumstances…it’s just up to us to try and notice them; not easy when we're stressed out, but possible...
With love xxx
Managing Devastation the Mindful Way
I became seriously ill in my early thirties and, after seven months in hospital, ended up pretty wrecked and unable to have children. I had a disastrous marriage in my late thirties and am pretty scarred from that. Needless to say, when I bought a beautiful sheep-dog puppy, Alfie, fourteen years ago, he became my world. He was from a farm in Yorkshire and could be aggressive but he was also very loving and helped me loads; he took weeds to the compost heap, shut the door, brought my remote control, shoes, bag etc and took me for lots of walks – which, as well as giving me great joy, probably literally saved my life. Alfie and I danced, he ‘gave me five’, hugged and 'kissed' (licked) me on request and when I asked him who the most beautiful dog in the world was he’d put his paw in the air. Sitting on the passenger seat of my campervan, if people looked over at traffic lights etc I’d ask him to wave, delighting strangers wherever we went.
Alfie was my best friend, protector and child and partner substitute. And then he reached about a hundred in human years, became arthritic, lost his hearing and developed tumours. A month ago, when he was struggling to breathe, I called in the vet to put him to sleep. He made a blood-curdling howl as he was dying.
Needless to say I was and am devastated. In the first week my brain tried ‘looking on the bright side’ - no more piles of dog-hair and muddy paws, sometimes getting up in a morning to pee and diarrhoea, fears of him biting people, dragging me out on cold rainy days and mega vet, insurance and medication bills. I tried distraction - sanding every bit of bare wood, painting my porch, obsessive gardening etc; I couldn’t save my dog but I could gain control in my home! I ate a ton of sugar in an attempt to comfort myself.
None of these methods eased the pain and I began to feel depressed, anxious and grumpy. Then I finally did what I needed to do, just as I did when I came out of hospital - and as I do to deal with my ongoing health challenges. I put on some soulful music, faced the pain and cried and whimpered for three solid hours. I observed that my tears felt like a waterfall, that my belly and shoulders were ‘chugging’ and my heart felt sore. Instead of thinking ‘Oh god my life’s over…I’ll never be happy again’ etc and making my pain even worse, I just allowed myself to be as I was and stayed with my bodily sensations, knowing that my tears were literally releasing sad and stress hormones and my ‘chugging’ massaging my organs, toning my stomach muscles and easing my shoulder tension. I slept that night for the first time in a week and felt calm, less despairing and open-hearted again.
In mindfulness there is no question that we hurt as human beings - that’s just life and the pain’s known as the ‘first arrow.’ The ‘second arrow’ we are seen to stick in ourselves – it’s the negative, catastrophic ’story’ we add onto the pain. The pain is sensations, the self-inflicted suffering is our thoughts about the pain.
Our culture encourages to avoid pain at all costs with medication, over-busyness and language (“Don’t cry now”). We seem to have equated sadness with some sort of failure.
I have a grin on my face. I know the secret of the ‘Second Arrow’. I don’t ask ‘Why Me?’ or ‘Why my dog?’ I try to just cry when I need to cry (and have confirmed through my own experience the research which has found that intense emotions generally only last a matter of seconds or minutes) and I quietly observe. Alfie’s death ‘is as it is’ and I can’t change that; all I can do is kindly process and transform the pain by facing it and letting it go. I don’t need to stab myself with the dastardly second arrow; rather I need to be kind to myself
A month on I can smile when I picture Alfie beaming his wide grin at me. I’m also still crying. Either way, I’m so grateful for the fourteen years I had with my beautiful, amazing Alfie-dog and also for having learned about the mindful way and that it’s ok to just calmly feel what I feel and watch the pain transform and pass…
We have two ‘parts’ to our autonomous nervous system, which
controls all the stuff we don’t think about - our heart and breathing-rates,
blood pressure, digestion etc. The first part, our ‘accelerator,’ is our ‘sympathetic’
nervous system (SNS). In this mode our cortisol and adrenaline hormones are on
the go, we’re wired, alert and ready for action. Which is great unless we're feeling under threat - no longer from sabre-toothed tigers but from the need to meet work-targets, suffer traffic jams, meet the non-stop demands of technology or being a parent or ensuring we look and behave 'like the pack' (without wrinkles )on TV - we go into ‘fight, flight or freeze' mode . In this mode our ancient ‘reptile’ brain, the fast-action, danger-sensing part of
our brain, takes over and our focus becomes our safety. Blood is diverted from our organs, digestive
system, brain, skin and reproduction system into our muscles (so we can run or
fight). Our pupils dilate so we can see better and our blood thickens up, just in case we get injured in an attack.
When we sense that danger has passed, we start to relax and breathe again and in kicks the parasympathetic (PNS) part of our nervous system. This mops up all the cortisol, allows our blood to flow from our muscles and reptile brain back into our guts, organs and the ‘thinking’, grounded, compassionate part of our brain (the front cortex). Our blood thins down and our inflammation markers reduce; we’re at peace…
When we’re in our SNS mode for too long, however, our PNS gets exhausted, leaving ‘killer cortisol’ on the rampage. Cortisol can shred our
veins, weaken our hearts, cause inflammation (a big player in many illnesses)
whack our immune systems (sometimes leading to auto-immune diseases like
fibromyalgia, Lupus and arthritis or cancer) damage our guts
and reproductive systems (due to the ongoing low blood flow) and make our
brains turn to jelly and unable to remember, concentrate, focus and be
emotionally responsive to others.
This is possibly why most of we Westerners are often stressed, grumpy, exhausted and dying from cardiovascular disease and cancers.
But all is not lost!
Mindfulness has been shown to be a fabulous anti-dote to the potential damage of long-term anxiety and stress. With practices designed to both calm and sharpen the mind and relax and strengthen the body, it works on boosting the PNS and decreasing cortisol. Mindfulness is thought to have an impact right down to the genetic level, strengthening the ends of telomeres which hold DNA together, thus reducing ageing and potentially extending the life-span!
Can you devote a few minutes every day to some focused breathing and body awareness…can you afford not to?...
As we develop self-compassion and accept our sometimes painful and imperfect humanness, it helps us to tolerate and accept the pain and imperfectness of others. We learn to accept the whole of ourselves and no longer blame others for 'making us' act in not so great ways, we no longer see in others what we want to disown in ourselves (like seeing inhumanity in the Germans during the World Wars but failing to own our own). We see that we're all just frightened, vulnerable human beings who attempt to cover our feelings of smallness, shame and insecurity with rage, blame, arrogance, greed, the accumulation of material goods, botox etc.
This was the first poem I wrote. I'd just bought a new 'doodle' book and just wrote 'The Wide-mouthed frog' for some whacky reason. Then the next day this emerged...
The Pond
The wide-mouthed frog
Sat on a log
And began some contemplations;
‘What it is it with these humans,
Separating into nations?
We have a pond,
We share the pond –
That’s just the way it is
And yet these crazy humans
Get into such a tiz!
Bombs flying here,
Soldiers killing there
Everyone scared to death,
Half the world bloated
Half just bones
What a blooming mess!
And yet they show such promise!
They build us ponds
They feed the birds
And have smiles like supernovas!
They care for their kids
For twenty years
And then look after their oldies!
They can seem so kind,
So full of fun
- So what the blooming heck is it
That makes them act like a load of sheep
Having a mass communal hissy fit?
Maybe one day they’ll evolve enough
To see the great connection
And know that every other person
Is just their own reflection'.
