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The really annoying thing about dying

In his first Notes from Solitude, the death of his dad causes Roger Bretherton to reflect on the relationship and the strange emergence of 'father’.

Roger is Associate Professor of Psychology, at the University of Lincoln. He is a UK accredited Clinical Psychologist.

A pocket watch rests next to a black and white photograph of a father lying beside a new born baby.
Photo by Anne Nygård on Unsplash.

The death of my dad was sudden and unexpected. I don’t know why it is that, from the moment he died, I have had to fight the almost irresistible urge to refer to him as father- a term of address I never used about him or to him during his life.  

Perhaps in some psychotherapy session at some point my therapist referred to my ‘father’, and I may have followed suit. And maybe occasionally when socialising with those who seemed a cut above my largely lower-middle class background, I called him father so as to avoid the flat northern vowel sounds that would expose me as an interloper. But that was just to fit in- on all other occasions he was decidedly not father and definitely just good old plain, dad.  

At death he became a classic, a museum piece, a part of history, not the dad who taught me how to ride a bike.

But for some reason the moment he died, it felt like dad wasn’t enough. I now had to call him father - those were the rules. At death he became a classic, a museum piece, a part of history, not the dad who taught me how to ride a bike by panting and sweating my five-year old self round the block, but the father who taught me to be… a man, or something like that.  

The F-word has gravitas, presence, authority. Dads are human, often bewildered, occasionally pissed off, eminently huggable, easily taken for granted - just there. Admittedly, Freud would have lost significant gravitas if oedipal theory had considered common-all-garden dads and not cigar-smoking brandy-swilling fathers. And no doubt the climactic scene of The Empire Strikes Back would have lacked considerable pathos had Darth Vader casually quipped, ‘No Luke, I’m your’re Dad’.  

The curse of the martyr, write Albert Camus, was to have other people tell their story. The principle doesn’t just apply to martyrs, it’s true of all those who die. To be dead is to become a character in other people’s anecdotes. That’s the really annoying thing about dying, we become a topic of gossip, people get to talk about us without the courtesy of ever having to talk to us. We become object, no longer subject. I think that’s why I resist calling my late Dad, Father. It objectifies him, makes of him something that he wasn’t. It, most definitely fails to do justice to all that he meant to me. 

She simply said, ‘It’s your Dad’, and held me tight in a hug that lasted longer than usually permitted in polite company. 

I say he died suddenly. It was a Sunday morning. I was in church at the time. Actually, worse than that, I was on stage speaking to a church. As a psychologist working in academia, I teach and train all kinds of people in every kind of organisation imaginable, but every now and then I get to speak in churches.  

On this occasion I was talking about character, the positive qualities of being – like love, gratitude, hope, wisdom and so on – that make life worth living. When I stepped off the stage my wife was waving to me from the back of the room, which was weird given that we don’t go to that church and she hadn’t come with me. When I wandered to the back of the auditorium wearing my ‘what are you doing here?’ face, she simply said, ‘It’s your Dad’, and held me tight in a hug that lasted longer than usually permitted in polite company. For someone who prides himself on social insight, it shames me to say that it took a while for the penny to drop. We were in the car with the engine running before it finally dawned on me what she meant. 

I try not to make too much of divine timings or fate, but there was something odd in the timing of getting that news. In that month I had addressed church congregations three Sundays in a row- which, as someone who is generally lazy and prefers not to work weekends, is an unusually intense frequency. But over three successive Sundays I had reflected aloud with those congregations that there were prayers that had accompanied the various stages of my life. Prayers that I found myself praying, almost as if they were prayed through me, as if they had chosen me rather than I they.  

In my twenties I had found myself praying as regularly as a heartbeat, ‘God do whatever you need to do with me, to make me into the person you would like me to be.’ It was a radical invitation for God to put me through whatever was needed to become who I was meant to be. But then the prayer faded. Its visit was over, it had done its work and it moved on. But as I addressed the congregations on those three Sundays I mused aloud that while the prayer of my twenties had departed decades before, I found a new prayer stirring in my forties. Now as the father of teenage boys, my new prayer was, ‘God do whatever you need to do with me to make me the father you would like me to be.’  

In the weeks that followed, people asked me whether I had had a good relationship with my dad. The most accurately answer was: we had the best relationship of which we were both capable. We both tried in our own ways to deepen our connection, but we were like the lovers in a romantic comedy; we always managed to miss each other. When he tried with me, I didn’t want to know. For several years, he left a book lying around at home that he wanted me to read. I never saw anyone touch it, but it moved around the house under its own steam. It was by my bedside, in the toilet, on the dining room table…  Macavity the Mystery Cat would have been proud. It was called, Things We Wish We Had Said. We may have wished, but we didn’t say. I never read it. Years later, when I tried with him, he was too flustered to respond. Both of us in our own ways lacked the courage to connect any deeper. But I was never in any doubt that he loved me, and I him. 

When he was alive I was most aware of how different we were. I defined myself in opposition to whatever he was. If he was gentle, I was assertive. If he was indecisive, I was ambitious.

He died of a heart attack on a Sunday morning asleep in bed, while my Mum was at church. Almost immediately his absence prompted a profound change of consciousness in me. When he was alive I was most aware of how different we were. I defined myself in opposition to whatever he was. If he was gentle, I was assertive. If he was indecisive, I was ambitious. If he was inexpressive, I was articulate. If he was like that, I was like this. And yet, almost at the very moment of his death, a reversal of awareness occurred. I started to see just how very much like him I was. His gentleness, his uncertainty, his scepticism, his care, his humour, were all mine. 

There is a rule in family therapy, that adult children relating to their parents should set their expectations to zero. We never truly see our parents until we stop viewing them through the lens of our own desires; what we wanted from them but never got. Until we do that our lives don’t really work, we sit around waiting for an impossible transformation, a payday that never comes, the moment our parents become exactly how we would like them to be, not as they are. For me, that moment of acceptance for dad only came when he was gone, I accepted him as he was when there was nothing left to accept. I don’t write this with any great sense of guilt or regret at opportunities lost, more with a sense of gratitude for what was given but often taken for granted.  

Oddly though, in the shadow of that seismic shift in my interior furniture, I detected the stirrings of an answer to my own prayer to be a better father. No longer compelled to define myself in contrast to what he was, I was freed to be what I was- both like and unlike him, and to be fair, more like him than I cared to admit. At some visceral level I came to appreciate how much of myself originated with him. I came to accept myself as a dad and my dad as a father.

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Assisted dying
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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.