Nigel was a fit and strapping young 40 year old man, working with his hands, off on holiday with his love to Bali. While travelling he a seizure and was rushed to hospital. The scan showed a brain tumour and many blurred days weeks and months followed for this young couple.
I witnessed a beautiful simple moment last Sunday as I did my ward round on the palliative care ward.
There were 16 patients to see, most had been admitted to die.
I met Nigel 4 months ago in clinic, he came in with his wife for support for symptoms of pain and nausea.
Surgery, radiation therapy, moving house to live with his parents, unable to work or pay the bills, forgetting words, slowing, adjusting.
Every step a new normal. How to do life day by day when the rules and boundaries have fallen away.
I had only listened to a lecture that morning, by the psychologist Ester Perrel titled ‘The erotic is the antidote to death” How does the teaching of a world leader in relationships and sex relate to end of life medicine? As a child of survivors of the holocaust Esters perspective on living in the face of suffering brings a beautiful simplicity to what we need when stripped of all the normal distractions.
Time is limited.
Death is close.
Human connection is all we need.
This same week we had won funding from the minister for ‘cuddle beds’ in our palliative care hospital ward.
Being hospitalised is the closest thing to incarceration, or being in jail.
There are rules, you have no privacy, there is fear and uncertainty about how you are supposed to behave and what you can and can’t say and when you are allowed to eat or get out of bed.
Rules about who can visit and when.
Death we know is inevitable, we are all mortal, yet every day I talk with people who are imminently facing dying in the coming short weeks to months. At every age. At every stage of life. This has been happening since the beginning of time. Yet we are always unprepared.
This week is palliative care week. Palliative care is a medical approach to treating the symptoms of life-threatening illness, through prevention and relief of suffering. The treatment of pain and physical, psychosocial and spiritual problems.
We humans are so interesting and unique, every person I meet has a different set of challenges and goals. Some need to know their children have a set of guardians to carry on. Some want to share a legacy of thoughts and memories.
One lovely lady with her two daughters, was not so concerned with pain but whether she would see the final of masterchef! This was their shared joy and she wanted closure – who was to win?
Maybe when it all comes to the bare essence of what is true the answer is intimacy, human connection. Not only touch, not always sex, but connection – feeling close and not alone is all we need.
Everyone has a different sense of what is intimate for them, what two people choose to do in private is nobody’s business.
That’s the beauty, it is theirs alone – a secret world, a place to escape, somewhere to run from the stressors of the day, to relax, to explore, to find joy and pleasure or to just rest.
Deni was 32, she was dying of ovarian cancer. She wanted to marry her love.
We had a garden wedding on the ward and we set up a honeymoon suite.
Two single hospital beds with rails down in the middle.
A crime-scene like tape over the doorway so the tea lady didn’t just waltz in unannounced.
This is when our occupational therapist, who is a legend, decided he would lobby and win over the parliament and the health department to change the way we do hospital for those at the end of life. I’m proud to say Ive witnessed innovation, progression, acceptance of the vital parts of life even at the precious last moments.
What would you do with your last days?
Back to Nigel on Sunday. As his disease progressed his tumour affected the part of his brain that changed his behaviour and personality. He became aggressive, like a naughty toddler in a large powerful body.
But the beauty was the way his face would light up when his wife would arrive. And although he didn’t understand, his whole demeanor would soften. He would sometimes say to us “isn’t she beautiful?”.
So that morning, instead of pushing open the door on my schedule without much thought to this man privacy. I caught a picture which stopped me – through the glass panel in the door i could see two still bodies lying, both looking out at the sky. She was also in the small single hospital bed, and he was still and at ease for the first time in days.
Although his brain wasn’t functioning, his heart and energy and essence and spirit and memory and electrical circuits all certainly knew what was right. He rested there.
We crave for intimacy, we seek and search, sometimes in misguided ways we replace this with sex, or substances, or negative interactions… anything to feel connected… just to feel.
The physical closeness of one other soul who can be a witness to our life. One who allows us in closer than others, behind their private walls, can be a simple beautiful antidote to suffering.
Dr Rachel Wyndham