Article
Change
Death & life
4 min read

Beauty’s extraordinary masterpiece

Gathering like figures in a painting, a family grieves.
A rockpool on a beach reflects the sun, a castle stands beyond the sand dunes
Bamburgh beach, Northumberland.
Dan Russon on Unsplash.

There is one particular quality of light that I love above all other. You get it most in autumn or in spring, the times when change is on its way. It is a slightly softened light, faintly blue, which lays a muting wash over a golden afternoon. It’s as if there’s a teaspoon of milk stirred into the clarity of a May morning, a gossamer veil across a long view. Edges are merged and brushed, brilliance blends to dreaminess. It is opal, not diamond. 

We had light like that today, and it was just right in its gentleness. Because this morning we took the cardboard tube containing my cousin Billy’s ashes, and we poured them into the sea. His wife Sarah drove down from Edinburgh to join us in Northumberland, and we gathered on the shore in a place sheltered from the wind by the rocks. The Farne Islands were before us and to the north lay the blue bulk of Bamburgh Castle, with Lindisfarne – Holy Island – showing wreathed in soft haze further beyond that. 

He was too young to die, Billy, at 51. Too gifted, too clever, too kind. It was pancreatic cancer that got him, and it got him fast. Eleven months between diagnosis and death, that’s all – and here we are, shocked and saddened. It would have been his 52nd birthday today. We have had cake and prosecco. And yet we are casting what remains of him into the water – a tidal pool washed by waves and weather. 

It’s not without its funny aspects, this solemn occasion. Billy’s beloved dog Obi is with us, only just out of puppyhood, and like all vigorous young creatures is unimpressed by ceremony. He finds a decaying guillemot and begins messy chewing. We manage to get it off him, but only after a chase and much commanding. Sarah picks it up by the tip of its wing; it spreads open like a glossy black fan. She swings it into the water where Obi can’t reach it. He doesn’t care anymore as he’s just found the corpse of a seal and is going to roll… we put his lead back on. 

Dead bird, dead seal, dead man. Living place though, restless foam-flecked ocean, wheeling seagulls, wind in our hair, the beautiful light pouring over us all. And a lot of love. We make a close circle round Sarah, our arms around her and each other, absorbing her grief, sharing our own. We can’t fill the empty space, the echoing chasm of loneliness – but we can head for the pub instead, to fill our more everyday chasms with Sunday lunch. Roast beef and Yorkshires please, for everyone, and sticky toffee pud to follow. Sadness is hungry work. 

We are like figures in a painting trying to cling to others in the same painting, not understanding that we cannot be lost.  

Later on, much later, when everyone is gone, there is a spectacularly gorgeous sunset. I stand in the harbour watching it, mother of pearl colours melting silently from west to east, reflected in the sea and in the wet sand. My chest and throat and face and shoulders ache with sorrow, and a man on a bench sees me and asks if I am all right. I tell him about Billy. He asks if I would like to hear a poem he has written for his friend, who is lying in hospital with his neck broken. It is about a potter, shaping and moulding wet clay, collecting up and reusing shattered shards, creating new pieces seamed with gold. It is nice. The man is nice. And I have a sudden overwhelming feeling of being held. That underneath everything – the man, Billy’s death, the colours, the guillemot, Sarah’s aloneness, the wide wild sea – is a perfect, powerful sureness, holding all in balance. Me included. I am not a spectator in this situation, I am a part of it, one little detail in an extraordinary masterpiece. I don’t need to clutch and grasp and hold on to things. None of us do – because all are part of the same whole. We are like figures in a painting trying to cling to others in the same painting, not understanding that we cannot be lost. Creation remains complete, even when the pieces move around within it. 

It is a feeling of absolute reassurance. Thomas Aquinas (revered scholar of the ancient church) says that along with truth and goodness, beauty is one of the three Transcendentals, the unchangeable foundations of reality and the surest evidence of the divine. And it is so very peaceful there in the harbour – the huge luminous sky, wavelets hushing onto the sand, oyster catchers calling in their wild voices as they prepare for the night – that I am perfectly certain of the presence of God. So finally I can cry… for Billy, for Sarah, for my sadness. But mostly, simply, because it is too beautiful not to.  

Article
Assisted dying
Care
Comment
Death & life
6 min read

What do you make of Esther?

A campaigner’s call to change an assisted dying law got family calling MND sufferer Michael Wenham. Here he shares why such legalisation will increase people’s fear of dying.
An image of a woman wearing formal clothing is overlaid by a BBC logo, a programme logo, a sound wave illustration and a caption.
Today Programme post about Esther Rantzen's comments.
BBC.

"What do you make of Esther Rantzen?" asked my brother. 

I knew what he was talking about, as no doubt all listeners of Radio 4's Today Programme would have done. Clearly the advocates of assisted dying, or specifically suicide, have launched the next round of their campaign, even enlisting the late Diana Rigg, whose resemblance to my wife was once commented on by an old welsh policemen, as a witness. The Today Programme devoted a great deal of airtime to the subject over a number of days.  

My reply to my brother was that I thought it was a good thing if we were more open about the subject of death and dying. After all they are events everyone without exception will come in contact with at some point or another. So, the sooner we stop treating it as a taboo subject the better. However, the dangers of legalising assisted suicide, are proved by places like Canada and Belgium. 

I don’t see any way to protect us from such coercion, internal or external, except to demonstrate through legislation that every life, however tenuous, is equally important.

In January this year I made a submission to the Parliamentary Health and Social Care Committee consultation on assisted dying/assisted suicide. Here’s some of that submission. 

“I am writing as an individual who was diagnosed with a rare form of Motor Neurone Disease (MND) twenty-two years ago and who has experienced the condition’s relentless deterioration since then. There are a number of my contemporaries who have survived that long. That, and witnessing the ravages of the disease on friends in our local MNDA branch plus an Ethics qualification from Oxford, is the extent of my expertise.” 

“My first observation is how positively my contemporaries, with short or longer prognoses, with the disease seize hold of life. Clearly there are some who, like Rob Burrows, devote themselves to fund-raising and creating awareness; while others enjoy the opportunities of life that come their way. What might have seemed a death sentence has proved a challenge to live. 

"Secondly, I have recently discovered myself how expert professional care can enhance what is often portrayed as undignified dependence. Good caring can in fact add to quality of life. The sad thing however is that it is not something which the state will normally provide. Along with terminal palliative care, domestic social care must surely be a spending priority for any government that cares about the well-being of all its citizens. I’m fortunate to live an area of excellent MND provision and good, though not abundant, palliative care. But I understand that this is not equally spread through the country. If it were, I suspect it would reduce the fear of dying which must be a major motivator for assistance to ending one’s life. 

"Ironically, in MND, according to the Association’s information sheet, How will I die?, those fears are greatly exaggerated: 

In reality, most people with MND have a peaceful death. The final stages of MND will usually involve gradual weakening of the breathing muscles and increasing sleepiness. This is usually the cause of death, either because of an infection or because the muscles stop working. 

Specialist palliative care supports quality of life through symptom control. practical help, medication to ease symptoms and emotional support for you and your family. 

When breathing becomes weaker, you may feel breathless and this can be distressing. However, your health care professionals can provide support to reduce anxiety. 

You can also receive medication to ease symptoms throughout the course of the disease, not just in the later stages. If you have any concerns about the way medication will affect you, ask the professionals who are supporting you for guidance. 

Further weakening of the muscles involved in breathing will cause tiredness and increasing sleepiness. Over a period of time, which can be hours, days or weeks, your breathing is likely to become shallower. This usually leads to reduced consciousness, so that death comes peacefully as breathing slowly reduces and eventually stops.

"So, this is a third and subtle danger of legalising assisted dying/suicide. It would increase people’s fear of the inevitable fact of death and dying. I think this can be one factor in explaining why, in jurisdictions which have introduced it, we see it being extended beyond the first strict limits. It is held out as an answer to this fearful fact, death, whereas in fact death and dying should be talked about in realistic terms, as normal, as concisely outlined by Dr Kathryn Mannix. As she says, normally dying isn’t as bad as we think

If the government should be doing anything, the first thing it might well do, is to promote informed education about dying of the sort exemplified by specialists such as Dr Mannix, as well as adequately funding her former specialism of palliative care. It should start with schools’ curricula. After all every child will have encountered death at some stage. 

Finally, the dangers of coercion, in my experience, are not so much external as internal. It’s often rightly observed that prolonged pain is worse for the engaged spectator than for the sufferer. If you care for someone, seeing them struggling is barely tolerable. You may wish to see their struggle over, but underlying that wish is your own desire to be spared more of your own horror show. The person who is ‘suffering’ however has that strong survival instinct, common to all humans, and is more concentrated on living than dying. Having said that, when you are depressed, as might be natural, that instinct gets temporarily eclipsed. Then you need protection from your own dark sky. It is at such times that your other inner demons emerge: your sense of being a burden - to your family, to your friends (if you have any), to the NHS and to the state purse; your fear of losing your savings and of leaving nothing to your loved ones; your fear of pain and of dying (exaggerated by popular mythology), and your sense of suffering, heightened by your depression.  

"For most of us with long incurable diseases, it’s these internal perceptions that are most coercive, although they can be easily compounded or even exploited from outside. I don’t see any way to protect us from such coercion, internal or external, except to demonstrate through legislation that every life, however tenuous, is equally important to our society and worth caring for. ‘Any man’s death diminishes me...’ and so we will value it to the end." 

I'm grateful that when I received my 'motor neurone disorder' diagnosis, which was initially frightening, I couldn't be tempted to opt for an early death. Instead of one Christmas with my family (as I warned them), I've enjoyed 22 more Christmases. That was the law against suicide fulfilling its safeguarding function, protecting the vulnerable, as I was then. Contrary to my preconceptions, my form of MND (PLS) is very gradual and I've been able to live a full if increasingly limited life, thanks to my wife, Jane, who cares for me 100 per cent. 24 hours a day, seven days a week.  

My view is still that legalising assisted dying/suicide has more cons than pros. The better choice is to invest in hospice and palliative care, so that everyone may have access to pain and symptom care in the last years of their life.