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.

Michael Wenham

Michael Wenham lives with a motor neurone disorder, Primary Lateral Sclerosis. He blogs at My Donkey Body.

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.

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Comment

Wildness

7 November 2024

7 min read

It’s getting harder to be wild in this world

We’ve trapped and tamed wilderness into a commodity.

Elizabeth Wainwright

Elizabeth Wainwright is a writer, coach and walking guide. She's a former district councillor and has a background in international development.

Against a night sky a lit up face is blurred by the camera movement.

Under a Dartmoor night sky.

Yousef Salhamoud on Unsplash.

Some while back, my husband rearranged the books in our house, making sure that they were grouped together by theme. We have a lot of books, and there are now themes and sub-themes. It was quite an operation. Within the nature-related books, he created a separate shelf for books that have ‘wild’ in the title. We joked about it, but it made me think about how I’d noticed ideas of ‘wild’ pop up in lots of places in recent years: on clothing and stationery (with leaves or words like ‘keep growing’ printed), in shop windows (furniture displays draped in plastic greenery and fake animal skins), on social media (there are accounts that have ‘wild’ in the title connected to farming, conservation, publishing, personal development, coaching, poetry, business, and more), and in book shops (of which we apparently have only half the stock).

A quick online search on the topic of wilderness quickly leads me to conservation initiatives and statistics on the state of nature, but it also leads me to nature connection experiences, wild swimming, wild camping, soul work, and more. Wilderness becomes a pliable and hard-to-define term. It can relate to the natural world, to wildlife and natural spaces that have avoided human domination. It can also relate to the inner world, to spiritual experiences or to isolating and challenging times. But however you approach it, wilderness – inner, outer – seems to be having a hard time.

In recent months, wild camping has come under the spotlight. Dartmoor is the only place in England where wild camping is legal, and this this access helped to form me: as a teenager I hiked and camped with friends, encountered Dartmoor ponies trying to steal our food in the night, stomped through bogs and wolfed down boil-in-the-bag meals as the sun set. As an adult I’ve camped alone in a bivvy bag, my soul singing back to the Milky Way shining above me. Now, these experiences feel as much in need of protection as the nature they depend on, since a wealthy landowner decided to try and prevent people from undertaking this ancient practice of sleeping under the stars. The court case is ongoing, but it has highlighted the fragility of our access to nature here in England. Just 8 per cent of English countryside is accessible, and 3 per cent of rivers have an uncontested right to swim. Now, the last remaining right to sleep under the stars is under threat.

It is hard to know what we’re losing when it becomes harder and harder to see and touch the real thing.

We live in a time of crisis not just of the state of nature, but also of how we experience the natural world. In a recent study of nature connectedness, Britain was ranked lowest of all the countries surveyed. Our biodiversity is in crisis and so is our ability to encounter the natural world. This feels heightened by a way of being in the western world that sees us all living in our individual houses, working hard to pay for them, shuttling children and selves through schedules, spending fewer and fewer hours outside and with each other.

And this is not just a problem ‘out there’, because inner and outer landscapes are linked. It is unsurprising to me that in the UK at least, levels of good mental health, biodiversity, and access to nature have all been in decline. Disintegration of one is, I think, deeply connected to disintegration of the other.

These linked crises feel further threatened by the trapping and taming of ideas of wilderness, wrapping it into trends and materialism, commodifying it. There are some brilliant and essential initiatives helping to re-wild our inner and outer worlds. But there are also offerings that use wilderness imagery and the freedom and adventure associated with it to sell products and services, or as backdrop to human endeavour, or as a destination or resource for our consumption. I think a commodified wild can get in the way of the actual wilderness we need both externally and internally. This commodification is, I think, affecting our understanding of what the wild is and why it matters. It is hard to know what we’re losing when it becomes harder and harder to see and touch the real thing.

If real wilderness is everywhere but where we need it right now, how might we re-find it – in the natural world, but also within ourselves and our communities? Answering that question is work that many people are focused on now in all kinds of ways, and a short essay cannot begin to offer a full response. I will write more on this topic. But the question I have in mind at the moment is, how do we invoke wildness and wonder in the landscape of the modern world? – a physical landscape that is being stripped of nature, but also a social landscape that can often diminish our humanity. Perhaps a simpler way to ask the same question is, how do we not just survive life but get excited about it? – How do we love ourselves, our neighbours, and creation enough to deeply and truly care for these things?

Time stops, something says: here, look at this, it is everything.

There are of course structures, systems, and powers that need to change so that people can move out of mere survival, and so that the wild world is restored. I am not exploring those things here. Here, I want to simply share three things that lately, have energised my ability to feel the love, the excitement, and the desire to cherish and protect our hearts, our relationships, and the generous world that hosts us all. Perhaps by reawakening these things, we might find motivation and sustenance for tackling structures and systems.

First, I have been noticing what my young daughter notices. The light shining off a puddle; the way an ant crawls on her hand; the bright silver moon in the sky. I have never struggled to access the exhilaration of the natural world, but seeing through her eyes, I am doing so again. Time stops, something says: here, look at this, it is everything. The medieval mystic Julian of Norwich saw the wonder of the world, and God’s love for it, in a single hazelnut. She recounts her visions in her book Revelations of Divine Love. Sometimes connecting with the specific can help us see and face the global.

Second, there are authors who help me summon wildness and wonder in the landscape of the modern world, and in a future Seen & Unseen piece I’ll take us on a tour of some of those I love the most. Some of the authors are ancient. In Psalm 78, I read “…they forgot what he had done, the wonders he had shown them”, and “…they kept on sinning; in spite of his wonders, they did not believe.” If sin is a kind of disconnection, perhaps our disconnection from creation might lead our gaze to turn inward, and to land on things that do not call forth the best of humanity, rather than the wonder of each other and the world around us. That we are able to forget wonder is something we must remember and work to counter.

Third, I have been thinking through the encounters that have most exposed me to wilderness of the world and of my soul and of relationship – both the uplifting and the challenging. Encountering the vastness of that shining and vertigo-inducing Dartmoor night sky; encountering others in relationships that have helped me slip my skin and enter their unknowability and fragility and beauty; encountering contexts that seem too broken for repair and yet still light enters in. It is in these encounters that I first found God dwelling, and when I followed his trail, I noticed that throughout the Bible there are many people who experience the challenges, joy, and lessons of the wilderness. Wilderness is not just beauty – it can also be unknowable, disorienting, scary. For 40 days in the wilderness, but also in the beauty of the lily of the field and birds of the air, Jesus is right there with us, showing that God can meet us in beauty and barrenness, in wonder and in despair. Again and again in the Bible I see how God loves the world, how he calls it constantly to life through resurrection, through re-creation, through that three-in-oneness of father/son/holy spirit, of self/other/world, of body/encounter/mystery.

Now, I think our souls and societies might benefit from investing in relationships first conjured in Eden: with a garden, with a human, with God and the mystery he points us to. These things feed each other; when one suffers so do the others. As we face a disintegrating and increasingly commodified natural world, a mental health crisis, and an epidemic of loneliness, I think we are being called back to that garden, and to the kinds of wildness it made possible. I’ll look forward to exploring these themes more.