In This Short Life
Written by Patricia Murphy
RGN, RMN, Cognitive Behaviour Therapist, Founding Member and Co-chair of the BABCP Women and Gender Minorities Special Interest Group
In this short Life that only lasts an hour
How much - how little - is within our power
Emily Dickinson
In November 2020 I woke up in the middle of the night and couldn’t hear my husband breathing. This was unsettling, firstly because back then I rarely slept and secondly because his breathing over recent months had become so loud as a result of fluid build-up in the space between his lungs and chest wall, that I literally couldn’t not hear him.
When I turned the light on, I thought we’d been burgled. Shelves had been emptied onto the floor, clothes strewn about the place, a glass of water upturned. I bounded out of bed and found him sitting by an open window gasping for breath, confused and disorientated. I was horrified to see that his whole body from eyelid to ankle was waterlogged. His startled stare told me what I already knew. We had finally run out of track.
My husband was diagnosed with end stage kidney disease in late 2019. He was not considered a suitable candidate for transplant, so the plan had been to treat with a shed load of drugs, a rigorously revised diet and a fistula in preparation for the commencement of haemodialysis. He was adamant that he wanted to preserve our home environment as a ‘safe’, non-medicalised space and keep things as normal as possible. He has always tried to prioritise my comfort and not do anything that might alarm our adult children.
Autumn bled into winter, and we enjoyed a relatively stable period oblivious to the cataclysmic event about to hit the planet. When COVID-19 lockdown measures legally came into force on the 26th of March 2020 we followed the rules assiduously .and during the periods when they eased enjoyed late summer walks along the picturesque River Stour and long brunches in the garden of our favourite French cafe. Reminiscing but not making too many future plans. To be honest I imagine the rhythm of our lives at this point was not that much different from everyone else. This provided us both some comfort and paradoxically a sense of normalcy.
Then inevitably his kidney function deteriorated further. Blood tests revealed that the Glomerular Filtration Rate (GFR) which measures the kidneys' ability to filter blood removing waste and extra water had fallen to below 10 mL.min The normal rate for a man my husband's age is typically over 60 mL.min. The time had come to agree a start date for dialysis. This is a big deal. Mahoosive. Once you start the treatment you are committed to 3 weekly visits to hospital for life. The treatment lasts for about 4 hours but factor in transport to and from the unit and the day is pretty well spent. If you start this process your life is changed forever. If you stop you die.
My husband had wanted to delay dialysis until the last possible moment but that November night we were faced with a dilemma. The NHS had been forced to shut down or significantly reduce many areas of non-COVID care to deal with the initial peak of the pandemic. The vaccines were not yet available, and hospitals were proving to be dangerous places for everyone, not least the physically vulnerable and immunocompromised.
Our options became dramatically restricted. Living with uncertainty suddenly veered from a theoretical perspective to a 3-dimensional, surround sound, technicoloured experience. Of course, we all have daily lived experience of tolerating uncertainty and my husband would argue that intolerance of uncertainty is the foundation of all human culture. Well trained Cognitive Behavioural Therapists have a lot to say on the topic, all of it incredibly useful and sensible and I have over the years repeated it mantra like to my patients on a regular basis. There are however limitations. Is it just me or do other therapists swerve from absolute conviction in these strategies to feeling utterly appalled at the banality of the sound of the words coming out of our mouths at times of acute life stress. I’ve discovered that when your whole world is hanging by a thread it can be hard to sound convincing.
I was reflective enough to know that I needed to talk things out. My supervisor is great. An Acceptance & Commitment practitioner (ACT) and trainer, he embodies the warmth, gentle humour and shrewd insights that meant I felt safe enough to explore whether I should continue working. I have come to understand that ACT really is quite simple if you commit to it as a way of life. Being open, aware and active helped me to respond more effectively to my struggle, to connect with the right here and now and to continue to live purposely by pursuing the things that mattered to me. We agreed that maintaining a professional life helped to provide a sense of structure and utility that has always been so important to me. I still believed I had something useful to offer to others and I felt sharp. Actually, I felt sharper than usual. Maybe even Dennis Potter close to death, seeing for the first time the blossomest blossom on the cherry blossom tree, sharp.
If you are lucky, staring devastating loss in the face can do that to a person.
And then there was the comfort and solace I found in poetry. I have written before about the psychological benefits and prior to lockdown regularly attended a community Wise Words for Wellbeing poetry group in the local library. One day I will put into words all the ways in which this group kept my feet planted firmly on the ground and angled my head towards the sky.
My husband and I both agreed that until vaccines became available the safest option would be for me to provide him with the care he needed at home. The kids agreed although their coping styles, completely aligned to their essential natures, were totally different. One assiduously avoided any discussions with a medical focus whilst the other was deeply curious and needed reassurance that we had ‘a plan’. As a former RGN, home care did not phase me. I can care until the cows come home but the normal, gradual effects of ageing freak me out, let alone the systemically devasting effects of kidney failure. My husband on the other hand managed his predicament with a dignity, grace and humour I can only marvel at. Mind you, if it had been the other way around, I can’t imagine the bed linen would have received much attention and the fridge would likely have spawned ten different kinds of mould. Swings and roundabouts.
One question kept revolving around my head. Anyone who has experience of life limiting illnesses knows that you cannot reasonably ask a Doctor, “How long have I got?”. As a Doctor himself my husband was perfectly capable of doing a rough calculation. It didn’t stop me trying to find the answer though. I exhausted Google’s cache of kidney disease websites all of which plotted out the expected trajectory. I am aware that learning to manage information is an important skill to master when it comes to tolerating uncertainty, but it is something that most people are only prepared to row back to once they’ve followed the entirely understandable human instinct to leave no freaking stone unturned. If anything, the excessive frenzied searching helped me travel full circle line and then reconnect to my values and commit to making sure that whatever time we had left was going to properly reflect the life we had lived up until now.
The months between November and March 2021 when my husband received the first vaccine were extraordinarily difficult. He slept for most of the time, social distancing kept me from my children, and I felt stone cold lonely. I became accustomed to eating suppers for one whilst nursing a genuine terror of waking to find that he had died in the night. Sleep became elusive. I’m not religious but I live in a Cathedral city and found myself drawn to walking the cloisters at night. I interrogated the arched passageways for answers. My key question being, ‘After 35 years of marriage to a most extraordinary man and the first proper feminist I ever met what the hell was going to become of me?’.
A couple of 3 am crises requiring paramedic support ensued but each time the medical team managed to stabilise the situation with their unshowy and diligent expertise. Weeks passed by; dreary days fused with a sense of foreboding whilst we waited for notification for the second jab. The Dialysis Unit managed to set up a vaccination centre exclusively for dialysis patients in the local county cricket ground (his favourite sport) and on the day of our appointment my husband who could scarcely walk was wheeled to the head of the queue.
It’s been 8 months now since dialysis started and our lives have changed spectacularly. Our first grandchild was born during lockdown, and we have a second on the way. The joy and richness this has brought to our lives is something I feel but cannot even attempt to describe. Treatment can be gruelling and days off are often spent recovering from the effects, but general quality of life for both of us has improved. I have been extraordinarily fortunate to be in a job that allowed for a transition from face-to-face work to home working. As a self- employed CBT Therapist I have been able to maintain my practice and provide the level of care my husband required. I have a far greater appreciation for all my colleagues whose personal circumstances depend on flexible working arrangements and those who have been shielding vulnerable loved ones for the past 18 months. There is a whole other issue of what it means to be a registered full time, unpaid, carer whilst employed ( a duality of roles primarily experienced by women ) but I’ll save that for another day.
A couple of weeks ago the Poetry Group were notified that our lockdown anthology had been accepted by the National Poetry Library. Not all surprises in life are bad.
The cripplingly painful uncertainty I experienced at the start of this story has since morphed into an acceptance of life’s capriciousness and a determination to curate joy into every single day.
The nights? Well, they can take care of themselves.
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