The time is out of joint

It came as a great shock, of course -Youth  does not easily admit defeat: it lives as if there is always a tomorrow, will always be a tomorrow. The sun will rise after any darkness; day will always follow night. Youth is immortal, although perhaps it is that death is further away than they can see. It is beyond the horizon of a land so vast, it barely recedes as they wander along the rainbow of their still-wet days.

At least that’s how Elissa saw it in the years I knew her. We met at university in our freshman year -some club or other, I suppose -although we also took many of the same classes, I recall. And then after three years, she transferred to another school and I lost track of her -until one day I saw a face that shouldn’t have been where I saw it.

I had just started doing my first ward rounds on a neurology rotation in my fourth year of medical school, and there, tucked in a sunny corner of a four-bed room, was a pair of eyes that suddenly twinkled with recognition. Almost everything else I’d seen that first morning on the ward was depressing: asymmetrical faces, immobile bodies, eyes that stared unseeing, and perhaps uncaring, at the ceiling tiles -a ward of scarred, and time-ravaged bodies.

But there she was: a more mature, but still beautiful version of the Elissa I knew. Her auburn hair was shorter than I remembered -but partly shaved and bandaged near the crown. And her face told me she had gone through a lot since we had last seen each other.

I glanced at her chart. The beds on the neurosurgery unit were filled, and so she had been placed on this ward after her brain biopsy a few days previously, until something became available for her on the surgical ward. The biopsy results were depressing -definitely not encouraging for a 29 year old just beginning her PhD program in Psychology.

“Is that who I think it is?” she asked as I approached her bedside.

“I guess that depends on who you’re hoping for,” I answered lightly, and with a smile.

“So…” She ran her eyes across my face and then over the short white coat that medical students wore when visiting patients in those days. “Are you a doctor now?” she asked, even though her expression told me she knew I wasn’t. “Sit down and tell me what you’ve been doing,” she added, before I could answer.

We talked about our lives for a while -well, about everything other than why we were meeting after all this time in a hospital. Elissa could sense my discomfort.

“It’s okay to talk about it, you know…” she said, after an awkward silence when I’d seemed to run out of things to say.

I smiled weakly and shuffled around in my chair.

“Nobody wants to… They crowd around the bed and tell me how well I’m looking, and if anybody dares to mention my cancer, it’s to tell me I am going to beat it.” She glanced at the chart I was holding and smiled. “But I’m not, you know.” She studied my face for a moment. “I can see the subject makes you uncomfortable, too.” She sighed gently and then reached over and took my hand. “I find myself comforting my visitors more than describing how I feel about dying; they don’t really want to know.” Her eyes landed briefly on my cheeks and then hovered over my head before they returned. “I don’t think they’d understand anyway, you know…”

She smoothed the sheets on her bed with her free hand and sighed again. “The really hard thing is that I’ve accepted my fate, but nobody else has. They won’t let me…” She stared out of the window. “You don’t know how hard that is. I almost feel guilty for letting them down.”

She squeezed my hand. “But you know, what it really makes me feel is so very alone… I can’t talk to them about that -not my friends, at any rate.”

Suddenly she stared into my eyes. “Oh, I don’t mean you!” She smiled like the old Elissa. “It’s just that I’m still entitled to an opinion, don’t you think? And I don’t want to live forever, you know…”

I nodded, and stayed quiet and let her talk. I’d never felt so… so close to her.

Then her eyes began to twinkle again. “I mean I have a few quibbles about the timing and everything, but I think I could accept even that, if they’d only stop trying to console me all the time… and just listen.”

Her face was almost radiant as she poured out her feelings onto me, and we continued talking until a nurse tapped me on the shoulder to remind me I had rounds to do on the rest of the patients.

It was then that Elissa leaned across the bed and kissed me on my cheek. “Thank you, G,” she whispered, using my nickname like it was a caress. “Thank you for just listening…

Elissa died only a few weeks later -there wasn’t much to treat brain tumours with in those days, and she slipped into a coma only days after we’d talked. But our discussion has coloured my thinking ever since.

And one topic we discussed -the unfairness of our allotted lifespan- still surfaces from time to time, even all these years later. Most recently, I suppose, in an essay by Paul Sagar, a lecturer in political theory in the department of political economy, King’s College London. He was writing in Aeon, an online publication, outlining the fears that surround both death and its converse, immortality: https://aeon.co/essays/theres-a-big-problem-with-immortality-it-goes-on-and-on

I suddenly remembered Elissa’s feeling about immortality. I don’t want to live forever -just long enough… Until I’m ready, I guess. So I was pleased to learn that the attitude she taught me was neither anomalous nor unusual.

‘[T]he English moral philosopher Bernard Williams suggested that living forever would be awful, akin to being trapped in a never-ending cocktail party. This was because after a certain amount of living, human life would become unspeakably boring. We need new experiences in order to have reasons to keep on going. But after enough time has passed, we will have experienced everything that we, as individuals, find stimulating. We would lack what Williams called ‘categorical’ desires: ie, desires that give us reasons to keep on living, and instead possess only ‘contingent’ desires: ie, things that we might as well want to do if we’re alive, but aren’t enough on their own to motivate us to stay alive.’

I’m reminded, of course, of Bill Murray in that famous movie Groundhog Day where he lives the same day over and over again. As moral philosopher Samuel Scheffler at New York University points out, ‘because death is a fixed fact, everything that human beings value makes sense only in light of our time being finite, our choices being limited, and our each getting only so many goes before it’s all over. Scheffler’s case is thus not simply that immortality would make us miserable (although it probably would). It’s that, if we had it, we would cease to be distinctively human in the way that we currently are. But then, if we were somehow to attain immortality, it wouldn’t get us what we want from it: namely, for it to be some version of our human selves that lives forever. A desire for immortality is thus a paradox.’

And yet, is that it? There must be something else about, well, death -apart from fearing it- that makes us long to avoid it. Sagar mentions the Basque philosopher Miguel de Unamuno feeling ‘outrage and anger that something is being taken away from him (‘they are stealing my I!’). Unamuno is imagining the situation that most of us do when we are contemplating our own deaths: not a distant point of decrepitude, aged 107, trapped in a hospital bed, in an underfunded care home – but rather death as claiming us before we are ready.’

As Sagar concludes, ‘ We are not simply afraid of death, we also resent it, because it is experienced as an assault on our personal agency. We can fully control our own deaths in only one direction – and that, of course, is usually no comfort at all.’

I wonder what he might have thought had he met Elissa that day in the hospital so many, many years ago… Those who are dying may also have an opinion.

 

 

 

 

 

 

 

 

 

 

 

Death, Thou shalt Die

Just when you think that Age has afforded you a full panoply of experience, another one comes along that you are forced to fit into the bookcase. It may be sufficiently unique as to require an entirely new shelf, but more likely, it will be something so obvious that you’re embarrassed you hadn’t thought of it before, and can squeeze it in beside another thing you’ve already read.

The internet does stuff like that -to me anyway. Permutations and combinations of issues I had always believed were immutably fixed in time and space unravel at warp speed making me question the wisdom of any assumptions it was thought safe to trust when I was growing up.

Like Death, for example. It used to be that after someone died, all that remained were memories, and perhaps a few of their possessions. ‘Dead and gone’ was a relatively intuitive reality in those days; ‘Dead and present’ was an oxymoron. Now, most of us have digital feet that continue to walk the screen no matter our corporeal substance. And, apart from the nuisance algorithms that track me from app to app, I had not given those footfalls much thought -until, that is, I came across an article in the Conversation on digital grieving by Jo Bell, Senior Lecturer, Faculty of Health Sciences, University of Hull: https://theconversation.com/how-the-internet-is-changing-the-way-we-grieve-100134

She writes that ‘These days the dead are now forever present online and digital encounters with someone who has passed away are becoming a common experience. […] Each one of us has a digital footprint – the accumulation of our online activity that chronicles a life lived online through blogs, pictures, games, web sites, networks, shared stories and experiences. When a person dies, their “virtual selves” remain out there for people to see and interact with. These virtual selves exist in the same online spaces that many people use every day.’

When I first thought about this -the idea of inadvertently coming across someone, or something from whoever had died- I worried about the effect, and how I would react. But, as the author reports, ‘Yet for some, these spaces have become a valuable tool – especially so for the bereaved. An emerging body of research is now looking at the ways the internet, including social media and memorial websites, are enabling new ways of grieving – that transcend traditional notions of “letting go” and “moving on”.’

I was, of course, aware of the concept and probable value of memorials, but I have to confess that I hadn’t thought of them in terms of lasting online tributes. To be sure, I was weaned in another epoch when, apart from an obituary notice in the local paper, or flowers on a tombstone, there were precious few options to show that you remembered someone. But, of course, people today use the modalities they are used to.

Suicide is a devastating act, not only for the victim, but especially for those who are left behind. It makes sense that the friends would need to process the act as best they could. ‘For many mourners, the most important motivating factor seems to be the need to stay connected to the deceased and to “keep them alive”. And keeping a Facebook page going by actively maintaining the “in life” profile of the deceased, or creating a new “in memorial” profile, allows users to send private or public messages to the deceased and to publicly express their grief. […] The use of social media in this way goes some way towards answering the question of where to put one’s feelings – such as love, grief, guilt – after a death. And many people turn to the same sites to promote awareness raising and fund raising for various charities in memory of their loved ones.’

‘Unlike sentimental objects, social media pages and online spaces allow people to explore grief with others from the comfort of their own home. Talking to people online can also help to free up some of the inhibitions that are otherwise felt when talking about loss – it enables forms of uncensored self-expression that are not comparable with face-to-face conversations.’ Indeed, as they evolve, perhaps ‘online memorial sites and social networking spaces help the bereaved to see how events in the past can continue to have value and meaning in the present and the future.’

I was sitting in a dark corner of my usual Starbucks a few weeks ago thinking more of shadows than of death, when a couple of middle aged women sat down at the next table. Normally, I wouldn’t have paid them much heed, but one of them, a rather buxom lady was wearing a loose white turtle neck sweater that kept snagging one of her hoop earrings. Still waiting for my sausage-and-egg breakfast sandwich to cool, I have to admit I was searching for a divertissement, and her ear seemed as good as any.

‘I visited Krissy again today, Helen,” she said matter-of-factly to her similarly attired and equally Rubenesque friend.

Helen looked up from her still steaming espresso macchiato “That’s nice, dear. Anything new?”

Her friend shrugged and cuddled her cinnamon dolce latte in two serviettes folded to dissipate the heat, I suppose. “Well, a few others must have visited her earlier, because I saw some collars, and a milk bone…”

Helen nodded, but she sat back a little in her chair and left the macchiato to cool in front of her. I could see her staring at her friend, even in the dim light. “Julie, it’s been, what, two months since…”

“Seventy-eight days,” Julie interrupted her with an intensity that made me wonder if her latte had just burned through the napkins.

Helen nodded sympathetically and reached over the table to stroke Julie’s free hand. “I know dear… but…”

“But Krissy loves the attention, don’t you think?” Julie sighed at the thought.

“Loved, Julie. Loved…” Helen corrected her gently, and I could see her begin to stroke her friend’s wrist.

Julie’s face suddenly winced as her earring grappled with her sweater once again.

Helen seemed to think it was more than a simple entanglement. “There comes a time when you have to let her pass, dear,” she said, and squeezed Julie’s hand before letting it go.

“You mean take it down, don’t you…?” There was a look of desperation in Julie’s eyes, although in the shadows it was difficult to be sure. “But people are still leaving bones…” She was almost pleading now.

Helen smiled and reached across the table again, but Julie was already standing up.

“I… I need some air, Helen,” she said stiffly and began to walk away.

Helen shook her head slowly, gulped down her macchiato, and rose to follow her out of the door.

My breakfast sandwich seemed pleasantly warm in the sudden silence, so I took an experimental bite and sat back in my chair to enjoy it. For some things, I realized as I chewed contentedly, memory is enough. I felt no need to Facebook the disappearing sausage and egg…

 

 

 

 

What did you expect?

We have become obligate avoiders, dwellers in the middle of the field well away from boundaries –the just-right-baby-bears of the Goldilocks tale. We seek to protect ourselves from edges, no matter how pervasive, how common, how important they may be. It was for a very good reason that the American folk hero, John Wayne, felt he had to remind us that ‘Courage is being scared to death… and saddling up anyway.’

Most of us seek to insulate ourselves from every extreme: we read about our lives from the safety of a middle page while dreaming of the youth in early chapters –as if there were no beginning or conclusion to the book. I suppose it reads as well in the center as at either end, but that misses the point; the book is a story –our story- and to ignore the epilogue or, for that matter, the introduction is to miss the context in which it is written -the gestalt.

The end of life, is an example –until recent times, most people in Western civilizations died where they lived: in their own homes. Family and friends were usually there to provide comfort and support; it was not treated as an event that necessitated separation, but rather as a communal passage –something that invited witness and provided solace for all involved.  Dying, especially of advanced age, was not something to be hidden away or delegated to strangers, however skilled. Death was visible and inevitable; death was a known, if unwelcome guest in each home.

Birth, the beginning of the story, has also had a somewhat chequered history. It, too, was once relegated to the home, but with sometimes unfavourable results for both mother and baby. This led to it being assigned to areas –or assistants- with more training and facilities in case unexpected -or anticipated- problems arose. And while, as an obstetrician, I feel more comfortable in an institutional setting, there is no reason why a well-trained midwife should not be able to pick and choose the appropriate venue for the birth depending upon her assessment of the risk involved. And there is no reason, either, why family or friends should not be able to witness and support the event.

I was surprised, therefore, to come across an article in the BBC news that treated as, well, unusual, the idea of a mother’s children being present to witness the birth: http://www.bbc.com/news/uk-37020059

Clearly, some vetting might be required in terms of the children’s age and behaviour, but as long as they are prepared beforehand, and there is someone else in the room who could supervise and help them understand what is happening, I think it could be a positive experience. Birth and Death should be presented as they are: natural events –not secrets whispered behind closed doors.

*

I kind of suspected birth was no secret to Loretta’s kids. A third-time mother of six and  nine-year-old daughters, she brought them to every antenatal visit. I asked her one day while her older daughter played doctor with my stethoscope, how she managed to get them out of school each time.

She pointed to her watch. “Ever notice that I always book my appointments around noon?”

I nodded. We’d often joked about our stomachs rumbling each time we met. “But they don’t mind leaving their friends to come here?”

“McDonald’s,” she said and then shrugged. “It’s their reward for agreeing to come with me.” She was silent for a moment and then stared at me, her eyes twinkling. “Don’t look at me like that, doctor. Remember Bill Clinton?”

I nodded, puzzled by the non sequitur.

“I never inhale,” she whispered conspiratorially.

The girls were always on their best behaviour in the examining room –full of questions and wanting to try my equipment on themselves. I suspect that the visits sometimes even cut into McDonald time, but they seldom complained –they were much too curious about the growing baby. They never seemed to tire of asking me how much it weighed, and whether it could hear them through their mother’s tummy –apparently they would sing to it at home. The moment they both waited for, however, was when I would place the Doppler device on the uterine wall so they could hear the heart. Janice, the older one, would even time it with her watch to make sure my device was counting correctly. They were both as involved in the pregnancy as their mother.

One day, towards the end of the pregnancy, Loretta phoned me. “I’ve been thinking of letting my girls see the birth,” she said. I could hear a little hesitancy in her words as she spoke. “Will the hospital allow that? My mother will make sure they don’t get in the way,” she added, almost too quickly.

I smiled into the phone –I’d been expecting her to ask. “As long as they know what to expect Loretta. There’s sometimes a lot of… well, yelling as you push… and a lot of blood –especially when the placenta comes out.” I paused for a second. “They have to be told that none of that means there is anything wrong. I wouldn’t want them to become scared.”

She chuckled into her phone. “They watch deliveries all the time now on YouTube, doctor –complicated ones, scary ones, and even ones that end up in Caesarian Sections. I think they’ll be all right.”

“Then it’s fine with me.” I reminded her that I may not be on call when she delivered, but she merely laughed.

“You didn’t make it for the first two either…”

*

Obstetrical practice nowadays is a hectic melange of joy and crisis, each delivery unique and exhilarating to be sure, and yet strangely merged into the one a few minutes before and blended into the one a few minutes later when on call at the hospital. So I have to admit that I was pleasantly surprised one evening as I was rushing to yet another delivery further down the hall when a nurse informed me that Loretta had just been admitted in labour.

“She’s almost fully dilated and it’s her third baby; she won’t be long…” she yelled as I ran past her to the accompaniment of screams from the room where I was originally heading.

Obstetrics is sometimes an exercise in ad hoc triage, and the screams were becoming louder and more compelling from that room, so I had little choice in the matter. I arrived just in time to exchange the mother’s for the baby’s screams, and allow a placenta to jump suddenly into my lap while she snuggled her precious baby against her abdomen.

In the warmth of smiles and congratulations that followed, I almost forgot about Loretta until the nurse’s face appeared in the door. “They want you in Room 8, doctor,” she said, almost casually.

I removed the placenta from my lap and stood up ready to run from the room.

The nurse shook her head sternly. “Better not show up like that,” she said, pointing to my gown. “You’ll scare the girls…”

I grinned sheepishly from behind my mask. I’d forgotten about the girls.

Loretta’s room was strangely calm when I arrived. Everybody was smiling, the baby already snuggled skin to skin on Loretta’s abdomen, and the girls were standing beside their mother enthralled and staring wide-eyed at the crying baby.

Maria, another nurse, who’d been with Loretta since her admission, was just removing her gloves after making sure the newly-delivered placenta was in its little metal bowl. Even though trained as midwives, the obstetrical nurses rarely get a chance to exhibit their skills except at times like this, and she was smiling from ear to ear. Things had obviously gone well.

“Congratulations, Loretta,” I said and immediately blushed. “Looks like I missed number three as well. I’m sorry…”

“Don’t be sorry, doctor. Maria did a fabulous job.”

Maria glanced at Janice who hadn’t even noticed that I’d finally come into the room then focussed her attention on me. “Actually, I was a bit rusty,” she said with a mischievous smile and winked at me. “Janice kept reminding me what to do next…”

Janice turned her head and stared at me. “Maria did a good job,” she said approvingly, “But she dropped the placenta,” she added, her face turning serious like a teacher unwilling to overlook a mistake. “I told her it’d be slippery…”

 

A Right to Die?

Death is a word most doctors avoid; it is a defeat. Anathema. It is, in all their texts, in all their studies, blasphemous. Heresy. And my specialty is certainly not immune. In Obstetrics, it is an especial desecration: we are so used to dealing with the opposite that the very word, let alone the concept is an apostasy. Omega has no place in the delivery suite –it is an alpha space. It is where humanity begins, a place where, in the moment, mortality is banished and there is no dark night of the soul. It is a place of hope and expectation –it should not be otherwise or all is lost…

But we cannot sweep the inevitable behind a curtain for long; the curtain moves; the patterns change and we mourn and then celebrate the new. It is necessary: too soon we all will find ourselves and those we love in the company of the mourned.

It is hard to put ourselves in that place, but we feel with Dylan Thomas when he writes:

Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

It seems natural to cling to the only thing we have experienced: Life. We have crowned it with sanctity and clothed it in holy vesture for a reason –it is all we know for certain. All else is faith. Persuasion. Myth. Hope.

Most of us do not meet Death in our daily lives. Indeed we insulate ourselves and our children from it as if it were a disease -a contagion which, once met, may consume us by its very nearness. As if breathing it, watching it, or touching it contaminates us. As if by ignoring it, we will postpone our own personal encounter and move our name further down the roster.

And yet there is much to be said for attending to it, however peripherally. We fear the sudden stranger more than the as yet unexpected visitor whose name we almost recognize, and whose expression we acknowledge, however reluctantly.

This is not to say we should surrender the ghost without a struggle –the terms are sometimes negotiable. It’s the codicil of which we must be mindful -what else it requires. Or subtracts.

Anguish –suffering- may be a part of the human condition, but when it is endless, irremediable and pointless, one may well question its prolongation. Horace’s exhortation: Dulce et decorum est pro patria mori goes a bit too far, perhaps, and is clearly intended for different a circumstance, but it is at least an acknowledgement that even Death may be preferable to Life under intolerable conditions.

The point of this essay, as you may have guessed, is to question how much suffering is too much, and whether there is ever a moral –and perhaps ethical– need to intervene. The obvious consequence of that intervention, however, is where the controversy lies; if the suffering is too great, is intolerable, immutable, should there be a right to death? Must we do everything in our powers to prolong the agony? Or can we –should we- grant passage into that other realm of which we know so little -the dark Magisterium of others? And what if the sufferer herself requests it? Does that change anything –or do we merely assume she is asking under duress and therefore cannot be believed? An excuse not to act.

I was drawn to the subject by an article in the BBC news in which no less a personage than the retired South African Anglican prelate Desmond Tutu commented on the right to die: http://www.bbc.co.uk/news/uk-28282323  The article also discusses, and has links to, the issue of ‘assisted dying’ and various church and UK governmental positions on it.

Assisted dying is an issue that is troubling, to say the least. Ironically it has risen in importance in tandem with our ability to prolong life, but not necessarily mitigate suffering. That we are able to transit a woman with advanced ovarian cancer to an ileostomy bag and a wig may seem like progress to some, but unduly punitive to others. That someone might feel cheated, not just of health but even of hope, is understandable. We are tempted –dare I say inveigled?- to make treatment decisions not fully understanding that what is offered may not be a cure, sometimes not even an amelioration, but simply a postponement. We are all fond of wishful thinking –even doctors.

But then what? What does one do when further survival is not only pointless, but intolerable? When analgesia is not enough? When deterioration is felt in the core of one’s being and this devalues that which we have always held sacred: our ability to recognize the person we have always been? Surely mercy should dictate our help, and compassion our decision. I hope that in a society as humane and sympathetic as ours purports to be, no one actually conflates aquiescing to a request for help in ending unbearable suffering, with ending a life without a reasonably and ethically obtained consent. And now that even some in the Church are beginning to espouse a right to die, the laws should change. Must change! The laws would force no one, but perhaps enable those who wished to die to do so with some dignity, however tattered, still intact.

I remember a Bill Moyers interview on television many years ago with the American mythologist Joseph Campbell –a man who had a profound influence on me when I was young, both for his writings on comparative religion and mythology, and for the advice that you should ‘follow your bliss’. I think he was dying at the time of the interview, and looked unwell. But there was still an inextinguishable twinkle in his eyes that revealed the man I had always admired -although it was deep inside, and peering out bravely through the curtain of his wrinkled face. I’ve forgotten his exact words in the interview, but his smile convinced me of his belief. He said he thought of his body as a car he’d driven all his life. It had been good to him, and he knew every dint and scrape it had sustained. But when death came and the car stopped, he said he’d merely open the door with a sigh and walk away.

He died in 1987, long before the current assisted dying movement had taken root, but one hopes that when the time came, it was Joseph that got out of that car still following his bliss –not some stranger changed by drugs and wild with pain, raging against the dying of the light.