Tag Archives: dying

Goodbye My Friend

By Posted in Family, friendship, Life, Love, Medical, Running Tagged , , , , , , , 12 Comments

We are saying goodbye to Mannie today.

Mannie, my friend.

Mannie, whose loved ones weep today.

Manny, one sole man, who ran and ran.

Mannie whose race is finally run.

Mannie’s roots lie in Greece.

Mannie was true to his roots.

Those roots brought forth shoots who live and grow and bear fruit. The shoots are the children of Mannie and Demitra. When the young couple named their shoots they were visited by the muses: they named their children not Lucy but Alithea; not Robert but Panayioti; not Susan but Leni. The names carry meaning, love of course, and destiny.

Mannie did not give his children easy names, Aussie names, names to hide behind. He gave them what he received – a culture, a tradition, a history of beauty and pride.

Everyone knows of the feats of Manuel Karageorgiou, Mannie, who ran the first Melbourne Marathon and the second and the third and …

Manny was one of the eight. Eight glorious souls who had lived and toiled and wrought in every Melbourne Marathon from the first to the latest. Forty consecutive marathons. Foolish.

I want to suggest to the non-runner reader what Mannie’s folly entailed. Physiologists have identified an end point of energy. And adult human can run about 32 kilometres, then energy reserves are exhausted. After that the runner faces a wall. The runner digs into a core of belief and runs a further step. There remain ten kilometres, ten thousand steps. The runner digs further, drawing on pride, on mystic need, on love, on some truth in the soul. And the runner runs on, runs through a wrecked body. The runner now is pure spirit.

And then there are the final, agonising, ecstatic one hundred and eighty steps. The runner crosses the line and then the race is run.

A few paragraphs ago I began listing Mannie’s Melbourne Marathons. I stopped after three. Were I merely to list the forty your eyes would glaze, your mind would wilt, you’d leave the track that Mannie and the Eight would not leave.

My Greek friend always dreamed of running the Athens Marathon, a homecoming profound beyond imagining. But Mannie never allowed himself to run Athens because it clashed with Melbourne. And Mannie owed the event his presence, his being. Mannie would not desert his friends of the Eight.

I’d like you to visit www.howardgoldenberg.com and look up posts that tell of three of Mannie’s marathons. You’ll find them dated October 2014, 2015, 2016. And then read https://howardgoldenberg.com/2017/10/23/its-not-how-long-youve-got-its-what-you-do-with-it/ from October 2017.

I’ll reveal here some of Mannie’s medical history, normally a forbidden act. But Mannie as we know was not a normal man:

While on an early morning training run before the Melbourne Marathon a few years ago I sensed a solid bulk of human flesh approaching in the gloom. The flesh developed a face and the face shot a me smile through the mist. Mannie recognised me first.

Here he was, I knew, fresh from his bone marrow transplant. Preposterous – Mannie understood – to run a marathon with that illness, outrageous, with those therapies. He’d visited me the previous week to talk about running again. ‘The specialist says I shouldn’t run. Howard, is he right?’

‘I suppose he must be Mannie. One fall and your bones can break, so easily.’

It was a broken rib, cancerous, we both recalled, that uncovered Mannie’s diagnosis.

Mannie looked at me. Mannie knew I was no cancer expert, just a runner. His look was a plea; he wanted a reprieve.

I said I could tell him what was the safest course. But then I told him about my mother:’Late in Mum’s life her health was shattered by strokes, but the spirit of the wanderer that had taken her to the bright and the dark ends of the globe, burned still. My sister and I were going to fly to Uluru. Mum wanted to come. She said, “If I stay at home I’ll die one day anyhow. I’d sooner go and see and find and know; and if I die doing it, I’ll have seen the rock. That would still be a good deal for me.” Mannie thanked me and left.  You know what Mannie decided.

I referred before to Mannie’s folly. I’ve seen marathons. I’ve seen and felt the interest and the indifference of spectators. I’ve seen the fellowship of running. I’ve felt the loneliness of the Malta plains. I’ve seen the splendour and I’ve seen the blackness: both were present that day in Boston. I thought I had seen it all, until I ran a marathon with Mannie. An entourage ambushed him – a son, a brother, a younger leviathan figure, a clutch of attractive young women (I wondered who they were. I learned they were girlfriends of nephews of Mannie.) This phalanx of nonrunners surrounded Mannie, they spread widely across the road. Mannie was one runner among thousands, but he alone moved in this stream of flesh aching with love. They ran and ran alongside their hero – the older man, the fat man, the glamorous girls. They tasted fatigue but they would not leave him, not until he reached the next plank in Mannie’s platform of love; and this, of course, was Demitra. ‘DEM!’, he cried, and they kissed. And Demitra held their grandbaby. Mannie stopped. He held that chubby child close and inhaled her. And then he ran on.

I have written of a human, a person. I have written of him chiefly as the operator of a pair of legs. A person is more than that. More than a disease, more than his diagnosis. But in Mannie the runner I see the human and his fate. This man faced Nemesis and outran him for year after year. And when at last – five kilometres into the fortieth marathon, after Mannie stumbled and fell, then arose bloodied – it was Demitra who stepped from the footpath, who took his hand and led him away.

“..Old age hath yet his honour and his toil;

Death closes all: but something ere the end,

Some work of noble note, may yet be done…”

Farewell, Mannie. We will not see your like again.

Mannie’s family have let it be known they don’t want floral tributes to mannie. They’d prefer us to donate to the Myeloma Foundation in his memory. And of course, in his honour.

Conversations

By Posted in Faith, friendship, Life, Love, Medical, Opinion Tagged , , , , , , , 2 Comments

After I started posting some thoughts arising from the current euthanasia debates, four women whom I hold in esteem wrote in strong response. Two wrote openly on the blog, two privately. I will refer to them respectively as B, M, G, H.

B wrote: Hi Howard,

I’ve just read your maybe not rousing speech but impassioned piece on euthanasia.

If I should be dying and I should be in unbearable pain, and if through that pain I was not able to continue to relate to my loved ones other than to be overwhelmed by my pain, you would be one of the doctors I would reach out to to put an end to my pain and possibly my life.

Will you refuse me?

I first met B in 1971 when she brought about my birth as a doctor. I have not treated her since. Instead we have become colleagues and friends. B’s note shifted my thoughts from the abstract to the concrete. Here was a cry coming from deep in an ancient moment in my formation. The person who wrote is concrete. Reeling somewhat, groping for self-knowledge, I responded speculatively:

Dear B,

I cannot know…

I suspect love would defeat principle or conviction or predisposition to life.

In other words I do not know myself in abstractions but in my instinct and my sentiments.

My ancient affection for you, my strong drive to help – which surfaced in your case in c. 1971 are as likely to govern me as any personal ‘rule’ or law.

I am sure if someone came and demanded I act in any given way my instinct would be to resist.

I anticipated readers would respond with passion and with pain to my piece.

I was right…

You asked would I help you.

I know I would try.

I cannot predict what shape my help might take.

This is a heavy matter. No light answers. And for me, no right answers.

But love will govern.

B again:

From feeling like I was falling into a chasm your response came as a hand that reached out to stop me hurtling to my death. Strange metaphor given I was talking about asking you to help me to die. I am much relieved that love will play a big part in your decision making process, over and above noble and fine principles.

But the debate hypothetically may be akin to Solomon’s choice.

Let’s talk.

My friend G is another colleague, a person raised in a strong religious framework from which she emerged to find and form her own way. I suspect her hard struggle for freedom has left her with a strong respect for my right to find and form a path of my own. G asked:

Would you be comfortable referring one of your patients who met the criteria to hasten their end to another GP who you knew would agree to assist in that wish?

And if that patient asked you to be present during the event would you?

How much do you think religion affects your current view? Or are you unable to separate your religious self from your professional self?

All F’s questions arrived as text message on my phone. Like death a phone message catches one on the hop. An answer will be less considered, perhaps truer for its spontaneity. I wrote a text back:

Hello F,

I’m pretty sure my religious self is absent from this.

It’s as if something deeper and defining is at play.

I imagine that ‘something’ is what brought me into Medicine.

And that drive collides here with itself…

But on the other hand, it was religion that framed my earliest thoughts.

It is on reviewing the texts that I regret not telling F at the outset: I can’t imagine doing anything I will find comfortable. The best I can hope for is to be comforting.

But if a patient wants me there at the end, yes, of course I’ll come. I’ll want to hold her hand as she passes over to ‘that quiet land.’

F resumed by email:

I find people’s responses to this topic rather fascinating (and at times irritating). So many reactions are full of judgement and criticism when it’s a topic that requires the opposite – compassion, objectivity and an acknowledgement of all of the grey. It would appear that a single (subjective) experience of dying makes some people self-appointed experts on the topic. I am of the thought that there is no ‘truth’ in any one person’s experience. And I wonder if those who react so emotionally to the idea of not having the ‘right’ to hasten their own demise have been more traumatised/suffered by the dying of another than the person who was actually dying?

What do I know? I do know that I would prefer not to die of bowel cancer. My experience working on GI wards is that that would be a shithouse (excuse the pun) way to go. I know that until I am dying of a known cause I won’t know if I want the option to hasten my demise or not. I know that having witnessed many people dying of a known cause (some in pain, some in discomfort, some in fear) that I’m still not convinced that assisted death is the answer. But I’m not convinced that palliative care is the answer either – theoretically it should be but I doubt it will ever be financially. I know that those who have reached the palliative stage of their illness should never be admitted to an acute care ward in a hospital – I’ve witnessed far too many cases of what I can only term the neglect of those in their final days/weeks in acute care wards. And the reluctance of acute care nursing and medical staff to adequately manage final stage symptoms. I want to believe in palliative care but I’ve been waiting too long for results.

I know that if you were my GP and I had a terminal diagnosis, I would feel like I had the best GP in the world. I would know that when you asked a question you would be genuinely interested in the answer. And I would believe that you would have a moment of quiet grief when I left this world. And that would be a comfort. As a nurse I never felt any sorrow for an anticipated death of a patient – the overwhelming emotion I felt was relief. Relief that there would be no more pain, no more nausea, no more confusion, no more discomfort from lying day after day in bed waiting to be turned brusquely. But I have a feeling that you experience a moment of sorrow for each death – correct me if I’m wrong.

If I were your patient and I asked you to help me die and you indicated that you couldn’t then I believe I would want your help to find a doctor who would be willing. I would appreciate that you would feel obligated to offer alternatives but if my mind was made up and it was legal then I would want you to support my decision. You might not support assisted dying on moral and ethical grounds but having come reached a fully informed decision I would want your compassion to make that referral to a colleague who you trusted and respected. And the promise that if I changed my mind you would do everything in your power to make my end days as comfortable as possible.

Your friend, F

These words come straight from the bedside. They come from one who has stood with me at the bedside. I cannot gainsay a word of them. Yes I do sorrow for every death. Yes I sorrow for every pregnancy loss. I grieve inwardly for a miscarriage. There is something universal here and something personal. The universal is the instinct that drives all of us to struggle for life. The personal is hard for me to define or even to describe. It comes into focus most sharply for me at the birth of a child. Those moments find their mirror image in a death. The one elates me, the other deflates.

H is a writer friend, a novelist and a family historian whose earlier profession was neurology. She writes humane novels filled with unsentimental empathy. H was another friend whom I disappointed. She wrote:

I’m sorry you feel you could not give this final relief. I am a convert to assisted dying (this is not euthanasia – which implies someone else’s decision that you should die). My feeling has always been that adults who are dying should have some choice about their death, and seeing three dear relatives all the way to death, I am now utterly convinced that such choice should be available. I understand that in states in America where such choice is available, of those who take up the option only a small proportion use the drugs supplied. But, those who receive the drugs and do not use them, are much calmer and happier, for knowing that they have control and can die should they feel they have had enough.

H here echoes an experience described to me elsewhere by B, arising from her work with men diagnosed in the 1980’s with HIV-AIDS. At that time the diagnosis was a death sentence. Some of the doomed acquired the means of ending their lives painlessly, with the intention of using it at a time of their later choosing. Of those men only one availed himself of the drugs. The others lived out their natural term. Knowing they were able to die enabled them to live on.

I close here with one message of straightforward approbation. It comes from M:

Very thoughtful. And probably helpful to those who didn’t like your last post. I have put the link up on my FB page.

M often comments favourably on my blog. When she doesn’t approve she’ll keep her disapproval away from the public eye. M is of course (as she signs herself) my loving sister.

Let Me Die! Help Me!

By Posted in Family, Life, Love, Medical, Opinion, Poetry Tagged , , , , , , , , 5 Comments

The right to die has found its voice. Past generations heard little of that claim, the cri de coueur of our day.

I imagine we never wanted to die so much as we do now. In previous times when life was short, brutish and mean we struggled to stay alive. But now Medicine has taken over. Deaths are prevented, delayed and deformed. Few families in advanced societies have been spared the grotesque spectacle of a loved one subjected to medically prolonged dying.

Because we enjoy better health we live longer lives. Because we reach old age we accumulate the mutations that overwhelm our defences. Cancer results. The cancer epidemic is the trophy won for us by medical advances. And so Medicine sets out to fight its ugly daughter. We cut out tumours, we poison them with chemotherapy, we shrink them with X-Rays, we outwit them with genetically engineered antibodies. Many are the gains, great are the costs.

Eventually dying happens.

Death frightened me when I was younger. Now I can see death as a sometimes friend. John Keats nursed his brother through the long death of tuberculosis. Then Keats himself became tubercular. He knew what lay in wait for him: cachexia then death. The terminus he contemplated was like late–stage cancer, the body self-starved, the mind too aware, the complexion ghastly pale, the skin empty, disfigured:

                                                The weariness, the fever, and the fret 

                                                Here, where men sit and hear each other groan; 

                                                Where palsy shakes a few, sad, last gray hairs, 

                                                Where youth grows pale, and spectre-thin, and dies; 

                                                Where but to think is to be full of sorrow 

                                                And leaden-eyed despairs –

 

 

Keats wrote dreams of an easy death (in his Ode to a Nightingale):

                                                           Darkling I listen; and, for many a time 

                                                           I have been half in love with easeful Death, 

                                                           Call’d him soft names in many a mused rhyme, 

                                                           To take into the air my quiet breath; 

                                                            Now more than ever seems it rich to die, 

                                                           To cease upon the midnight with no pain, 

                                                           While thou art pouring forth thy soul abroad 

                                                           In such an ecstasy! 

                                                           Still wouldst thou sing, and I have ears in vain— 

                                                           To thy high requiem become a sod. 

 

When recently I posted ON EUTHANASIA I anticipated readers might react strongly. I was right: most who responded – on–line and off-line – experienced my thoughts as a wound. I learned how a doctor is expected to relieve all suffering. A doctor is a trusted friend. Once the doctor denies his patient her right, she feels he has betrayed her. The wounded person’s gaze is not directed here to the doctor as a moral agent, not as a person entitled to moral autonomy, simply as one who could help, who now, abruptly, at this last critical and defining moment, acts selfishly.

I wrote that changing a law does not necessarily serve wisdom. The reality here is no conceivable law can resolve all of the problems of our competing needs and values. We need relief. We need a doctor who respects our autonomy. We need a doctor who will not sit in lofty judgement.  We need a doctor who will protect life and now we need one who will take life. And we need to know he’ll protect when he should and take when we seek it. The forgotten need is that of the doctor to reconcile those parts of his work. Putting it a different way, if the doctor, in trying be all those things, violates her own being, inevitably she disintegrates. She must give away her integrity. And then all lose.

I read the responses. I felt them, the tremor of the soul that prompted brave, naked, passionate disclosure of self.  My mind went back to deaths I have known, deaths I have conducted. I recalled the baby who aspirated meconium in the birth canal. The baby’s chest heaved as it worked to ventilate lungs clogged with a material of the texture of bitumen. We ventilated him, he did not improve, he did not die. He would not die. Morning after morning I entered NICU and there he was, his skin marbled, his chest rising and falling in obedience to our machine. His life felt like a reproach. We had turned on the machine. I learned then that the decision to bring in the technology is more onerous than to withhold, to wait.

I recalled the first person to ask for my mercy. That person was my mother, the one who had given me life. Mum would have been sixty, I thirty. ‘Darling’, she said, ‘I have high blood pressure, I have high cholesterol; one day I’ll have a stroke. When that happens, I want you to slip me a mickey.’

I understood Mum’s reference to ‘a mickey finn’ – a lethal draught.

‘Mum, NO!’ – was my instinctive response, which I quickly softened with promises to read favourite literature to her.

Twenty or more years later Mum duly suffered stroke after stroke, the final one devastating. My son and I carried her up the stairs one day and I asked her whether she recalled our conversation. She did, clearly. I asked Mum whether she regretted my failure to ‘slip her a mickey’. Mum’s blithe response did not surprise me. Whichever way she might have responded would not prove any argument, would be particular, not general, would not resolve the next sufferer’s dilemma.

I sat with the heat and the passion and the pain of this debate. Having little faith in lawmakers to solve the problems of human existence and oblivion, I searched for some useful fragment to proffer. I recalled those numerous patients who had made written Advance Care Directives. For the simple doctor these expressions of your wishes are a godsend. I read them and I am ruled by your refusals. Some decline ventilation, some explicitly forbid ICU, some decline antibiotics or feeding by tube. Many directives are less specific: ‘Do nothing more than keep me comfortable.’ ‘Let me die with dignity.’ These last call for my deepest self-search. They challenge me to imagine what  comprises and what violates your dignity. They draw my mind into the unknowable tomorrow. But these directives too are helpful. Your opaque request demands my vision of your humanity. It’s a big ask and it’s a fair one. My parents asked of their children that we allow them to die with dignity. We did our best and we saw Mum and Dad pass more or less peacefully from us with our honest best. It’s a big ask but I feel equal to it.

So that’s my first suggestion: COMPOSE YOUR THOUGHTS, EXPRESS YOUR WISHES, WRITE THEM DOWN, GIVE THEM TO YOUR DOCTORS (IN THE PLURAL), TO YOUR LOVED ONES, TO YOUR LAWYER.

No guarantees.

The second idea came to me as I wondered about by own expertise in the matter of ending life by intent. I must do it unerringly. You don’t want to wake up mute and paralysed after I have botched it. Your family doesn’t want to see you struggle or convulse or vomit then inhale, gag and gasp. I’d need training. Then it came to me: the legalized euthanaser must be trained, supervised and certified. You’d want him to know the relevant law, the protocols. The euthanaser might benefit from ethical training. I am sure the practitioner will need pastoral support and peer supervision. He’ll need to be able to recognise and resist the opportunist heir-designate who wants Aunt Nancy knocked off before her care costs consume too much of the inheritance. (I had to do this once.)

So here’s my second suggestion, this to the lawmakers: A PERSON MUST BE LICENSED TO END LIFE. THE LICENSE WILL ASSURE THE COMMUNITY AND PROFESSIONAL PEERS THAT THE PRACTITIONER IS TRAINED, COMPETENT, HONEST AND WILLING. That final adjective might save many patients from the painful disappointment of denial of help by a doctor not prepared to end a life. (That doctor might be me.) You might or might not be able to respect the difficulty of a doctor who feels torn between your need and his vanity/arrogance/integrity/different sense of defining mission, but you need not suffer a humiliating rebuff in your extremity of need.

As I wrote earlier, a change of law cannot resolve everything.

It’s Not How Long You’ve Got, It’s What You Do With It

By Posted in friendship, Life, Love, Medical, Running Tagged , , , , , , , , 7 Comments

I’ve got six to twelve, the older man said.

The younger man said quietly, they give me three to six.

But you never know, said the elder, my count is down. A little. I might get longer. Doctors can be wrong…If the count keeps falling, I might last longer than the twelve; I might be able to take the family to Greece next year. I’d love to go…

The younger man said I want to get to my brother’s wedding in February.

Silently we did the sums. February will be after three months.

The elder man’s oval face creased. He said to the younger: maybe you can get into a trial. I’m on a trial drug. My count is down, a bit. Are you on a trial?

No. I’m not eligible. I don’t have the mutation.

The elder urged the other to do things, to try things, not to accept predictions as solid fact: They can be wrong you know.

The young man smiled his crooked smile, stretching the wasted side into momentary symmetry. I know, he said. At first they gave me twelve months. That was five years ago.

The elder man’s eyebrows shot up. Wow, he said, that’s beating the odds. His earnest face relaxed, happier now. Are you on chemo?

I have been. On and off. It’s stopped working.

I keep hearing about people who have their brain tumours removed. Couldn’t they try that?

They did. Twice.

Twice? The elder man winced. He was trying everything, fighting the younger man’s disease.

Whenever he spoke the younger man’s voice was quiet. A physiotherapist, he was trained in disability. Now it had come to him, kept coming, unfolding in his body. His brain analysed each stumble, he processed the growing weakness down the left side, every step was improvised, his studied speech experimental, not bitter.

I stumble too, said the elder man. Last week, I was only one kilometre into the marathon when I stumbled. The ambulance men would have taken me away but Howard here wouldn’t let them. It’s just the foot, it flops.

The younger man said you can get an orthotic to keep the foot straight. They work. They’re not comfortable but you won’t stumble.

The ‘stumble’ was a crash. Down he went, his heavy body accruing momentum that his muscles could not brake. Six of the last eight months in hospital had seen powerful tissues soften and shrink, proud muscles, muscles that had carried this man 39 times the full 42.185 kilometres and across the Line. One of the Legendary Seven, last Sunday he lined up for his fortieth. He walked, he trotted, he shivered wildly, then he fell. Bent forward at my feet the man groaned loudly. He crouched, his head folded under his belly and he groaned again. Blood oozed, first from his knees, soon from the heels of his palms.  Two tall young men materialised, one on either side of the fallen man. They asked questions, good paramedical questions. The athlete groaned. I said, He’ll be alright.

The ambos said, He doesn’t look too flash.

I said, I’m his doctor.

What’s his diagnosis?

Everything, I said. He’ll be right.

At the prospect of unwelcome rescue the runner hauled himself up the helping arms of his son and his doctor. His sister-in-law mopped blood. The tissue was soon soaked. He said to his son, I’m shivering. Can I have your jumper?

He started walking again. People in the crowd recognised him. He was one of the Seven. Good on you, they cried. Legend! Keep going!

The man kept going. So did his teeth, chattering violently now, drumming time with his gait. The doctor in me wondered about fever, the return of infection that had seen him in hospital again and again.

A little short of the Fitzroy Street landmark his wife intercepted him. She took his arm and guided him gently to the kerb.

***

The younger man and the elder had not met before, although each had heard me speak of the other, a person like him, another with a problem that doctors could not cure.

The younger man regarded the elder. This rotund man, this athlete, this grandfather who’d three times risen from his sickbed to run so far. He sat at a remove from his stricken body, his face alight in wonder.

I nudged the younger: tell him what you’ve been doing since your diagnosis. The younger man spoke a little in the voice I have come to know, the voice he always uses when speaking of his living while dying. The voice speaks softly, a grin riding above the speaking mouth, ironic knowing in the background. The elder sat and listened. He heard of the classes the younger man runs for children with disabilities: They’re the kids no-one can do anything for. I mean no-one can fix them. There’s no cure for their cerebral palsy or their intellectual deficit or their severe ADHD.

The younger man did not mention to the elder how he teaches children they can be anything, do anything. His own life is the textbook, held open to the kids.

How do they come to you? Do you advertise?

Not as such. More word of mouth.  And there’s the website*.

A smile dashed across the younger man’s face: We start off each time with a group hug. It’s more a gang tackle – they race across towards me and throw themselves onto me and we hold each other. It will be fun tonight. The younger man glanced at his failing left leg:  Until now my balance and strength have been fine. Tonight I’ll go down and I’ll stay down. He laughed. It was a merry laugh, no irony, just the laugh of a man looking forward to sharing with his small friends the joke that is his health. The joke that is all health that is broken or twisted or failing.

We ate, all of us suddenly hungry. The younger man’s left hand rested in his bowl of hot dhal. I looked down, wondering when he’d remove it. The hand stayed put. The brain that should have perceived and sent the message to the hand neglected its work. The brain has been invaded and the invasion continues.

I asked them both, Don’t you feel angry? (I felt angry.)

The older man said, Why would I feel angry? Look, I’ve lived, I’ve got my wife, my children, a grandchild. I have a lot, I’ve lived. I feel sorry for my mother. She rings me every day, every single day. She worries.

A moment passed while we thought our thoughts. I felt for the younger man sitting at the side of the elder and hearing of the joys of a life lived, of a man full with his generations.

The younger man said, I’m not angry about this. He pointed to his head. I just get angry when doctors won’t listen. I nodded. Some of my starchier colleagues are uncomfortable with a patient  who is more than his disease, one who charts his path, who travels his world so widely and deeply as my friend.

A week earlier I asked the younger man was he frightened of dying. He said no. Later, a characteristically quirky text appeared on my screen: On the way down in the lift I worked out why I wasn’t scared. Dying isn’t scary – if you get it wrong then you stay alive.

*www.camerongill.com.au

Death Visits

By Posted in Life, Love, Medical Tagged , , , , , , , 6 Comments

Death visited last week, snatching away a lady whom we’d expected would recover. She was 87 years of age, a little disorganised in her brain, not vigorous but not too ill. We admitted her to hospital in the morning for observation and nursing care. Her elder sister had dementia too. She visited in the afternoon, escorted by her carer, a slim Asian woman.
 
 
At 3.00pm our patient enjoyed her afternoon tea. At four she took a nap. While asleep she stopped breathing. Big sister called us. Her cardiogram showed a heart attack. Her end of life instructions read: NO CPR. NO RESUSCITATION. She died. I left the dead concealed behind curtains and approached the living. I leaned and spoke clearly: ‘Your sister has just died in her sleep.’ It was the carer who fell onto the shoulder of her client, crying. The elder sister comforted her: ‘Don’t be upset. You get used to that.’ The calm features of the Asian woman twisted in grief, her face suffused. What silent sorrow of her own had been roughly torn open?
 
 
 
Meanwhile death had been stalking another two of my patients for days. I could hear his tread closing on them, unhurried, inexorable. For the younger of the two, death – release from her cancer – could not come soon enough. She begged, 'Let me die. Help me to die.' We gave her all we had, our promises of kindness, the usual feeble half-answers. She lapsed into a dull quiet, defeated by our timorousness.
 
 
The elder patient was far from ready. She had lived through the Second War in Europe, had seen much. Late at night she grasped my hand, breathlessly contriving a voice that filtered feebly through her oxygen mask. She pulled me close: ‘What will happen to me?’
I looked at her aged face, searching her: ‘Are you afraid?’
‘Yes.’
‘What are you afraid of?’
’Dying.’ She looked hard into my face.
‘You don’t need to feel afraid. When the time comes you will fall sleep. You will not suffer. You will sleep and you will not wake up. We won’t let you suffer.’
The old lady brought my hand to her chest and gripped it hard, pulling me closer. We breathed together in the darkness. No voice. Her smile said her thanks.
 
 
I went to my quarters and fell fast into sleep.  My phone rang. When the screen read ‘Unknown Caller’, I knew it would be the hospital calling. Surmise told me death had arrived for one or other of my friends. No, not yet. A third patient, more peremptory, had summonsed death by swallowing two weeks’ medications. With one hundred and forty tablets inside her she dictated to the nurse the disposition of her possessions: ‘Give my good overcoat to this one. Give the money that’s coming to me to that one.’ 
 
 
Sleep was slow to return. I lay and calculated the effects of twenty-eight strong blood pressure tablets, and an overdose of aspirin. I must have slept, for the ringing of my phone disturbed me. ‘Unknown Caller’ again. No, no-one had died. A child had a red throat.
 
 
Over the following hours of darkness ‘Unknown Caller’ rang six times. Asthma, wet lungs, fever. No death. At dawn the call hauled me from deep sleep: ‘Come now! Cardiac arrest!’ A large inert body, a small nurse pushing down hard, again and again and again. A flickering trace on the cardiac monitor, a chain of us thumping an unwilling heart, injections of adrenaline, a failed electric shock. No pulse at the wrist. I called a pause, the hopeful triangles on the monitor fell into a flat line. No breaths, no heartbeat. The husband of the inert figure stood, watching, his hand on his mouth. We tried again.
 
 
After a time I called a second halt. I listened for a heartbeat. I listened and watched for breathing. I shone a torch into pupils and found them wide with death. I walked across the room to the husband and said, ‘Your wife has died.’ A massive man, erect, he crumpled into silent weeping. His heaving trunk was enveloped instantly in the embrace of a woman I had not sighted. I spoke into the bereaved man’s free ear, ‘She didn’t suffer. She was unconscious from the instant she fell.’ The embracer’s arm groping blindly, grabbed me, held me hard in the grieving ruck.
 
 
At length I extricated myself. The small nurse from Uganda wiped his eyes. Another nurse said hoarsely, ‘I was at school with the husband.’
After certifying the death and writing my notes I left the hospital. Outside, the chill of an Alice Springs morning felt welcome on my skin. I wandered to a park and attended to my dawn prayers, delayed by a death.

Mother’s One Hundredth Birthday Party 

By Posted in Family, Life, Love Tagged , , , , , , 7 Comments

I’ll invite my brother and his family and Mum’s nephews and nieces, her great-nephews and great-nieces, and my children and their children, as well as some of my friends who were also Mum’s friends. But Aly Ong won’t be there. He’ll be back on the plantation in Malaya. My sister Margot won’t be with us; she lives in New York so she’s excused. It was all Margot’s idea, really, this idea of a family party. She’s inviting her kids from New Rochelle and Philadelphia and Boston and all their children and they’ll tell stories and eat pavlova in Margot’s pavilion by the Hudson. And we in Melbourne will feast and reminisce by the Yarra. Well, within cooee of that river.
 
 
In their generation Mum and her younger sister Doreen were masters of the pavlova, grandmasters really. The meringue edge was firm, the interior light and mallow, the whole edifice of air stupendously high. When Dennis ran his restaurant he turned to Mum to bake pavlovas which he’d serve in massive slices topped with whipped cream and passionfruit and strawberries …. and lust. Now the mantle has passed to Margot.
 
 
Will it spoil the party that Mum won’t be coming? Well, it would be lovely if she were to attend, but it’s big ask. Mum will be there, though. She never really left.
 
 
(Let me tell you about Mum and Aly Ong. Back in the ’sixties Aly came to Melbourne under the Colombo Scheme, a government initiative whereby Australia would educate Asian students and send them back home to become leaders in their own, developing countries. Aly studied Accounting with my brother Dennis and the two were close friends. That meant Aly became an habitue at number 15 Atkinson Street, Oakleigh, eating pavlova and Mum’s form of fried rice that must have made him laugh. But Aly was too polite to laugh.
 
Aly was shy. Left to himself he’d never have raised the courage to ask Mum for the loan of her car. But having Dennis as a friend meant you were not left to yourself. ‘Mum, Aly needs to borrow your car tonight. He’s got a date.’
Aly blushed: ‘Oh, no Mrs Goldenberg, I really don’t need…’
‘Of course you can use the car Aly. With pleasure.’
So Aly took the car.
 
He returned a few hours later, looking shaken. I asked him what was wrong. He shook his head, saying nothing. I saw tears forming. ‘I must speak to Mrs Goldenberg, was all I could get out of him. Mum was in bed upstairs, in one or other of her various states of partial consciousness. I told Mum Aly needed to see her. He was in some distress.
 
 
Mum descended: ‘Hello Aly darling. Did you have a nice time?’
‘Mrs Goldenberg, something terrible has happened. I crashed your car!’
‘Oh, Aly, are you hurt?’
‘No, Mrs Goldenberg, but the car…’
‘Are you sure you’re alright, Aly? And your friend? Is she alright?’
‘’Yes, thank you Mrs Goldenberg, quite sure. But I’ve smashed your car.’
Mum’s car was new, brand new. It was a Holden Premier, top of the range, with iridescent green duco and beautiful tan leather seats, Holden’s first foray into luxury.
‘Oh, never mind about the car, Aly. Sit down and have a cup of tea and some pavlova.’)
 
 
Mum was born on June 8, 1917, and she did not have to wait very long to become acquainted with death. Her father died when she was twelve and she lost her mother three years later. Falling happily into the care of Gar, their miraculously liberated and liberating grandmother, the girls thrived. After her parents died Mum accepted the reality of death. On visits to Melbourne Mum would drive us past the Brighton Cemetery and remark, ‘Mummy and daddy are in there.’ It took me a while to work out what and who was ‘in there’, and why. It was disorienting to hear ‘mummy’ and ‘daddy’, words I attached to living, loving, parents, indispensable supports of my being. But Mum’s tone was blithe. Death held no fears for her. Not personally, not for herself.
 
 
But for Doreen, Mum trembled. In her middle and later life Aunty Doreen fell sick often and fell hard. Once or twice I found Mum in tears: ‘I’ve told Dor I have to peg out first.’ In the event Aunty Doreen did Peg out before Mum, dying in her late eighties of heart disease that exhausted her will to live on. Then Dad died, and my younger brother Barry said, ‘Don’t you go getting any fancy ideas, Mum.’ Only two years later Dennis died, Mum’s firstborn and first loved. Mum said, ‘I’ve always known death is part of life.’ And I said, ‘Mum, don’t think you’re allowed to die.’
‘I’ll do my best not to, darling. I’ve never died yet.’
 
 
One week before her ninety-second birthday Mum’s best was no longer sufficient. She won’t be at her one hundredth birthday party, but we will excuse her dying. She can be forgiven one lapse.
 

Sylvia and Bruno, A Love Story

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I watched an aged couple today as they made love.

She is in her late eighties, he’s a little older. Thirteen years ago, Sylvia (not her name)
became vague and forgetful. Bruno (not her husband’s name) passed the farm on to 
the children so he could care for Sylvia at home. For ten years this worked well, but as 
Sylvia became less active she gained weight and as Bruno aged he lost muscular 
strength, the strength that built the farm that sustained a family. Three years ago, Sylvia was admitted to the nearby nursing home. Bruno visits Sylvia every day.

Until today Sylvia had remained the most placid, easy-going resident in the home. When she was found this morning, burning with a high fever, pale and limp, helpless even to sit, breathing fast, her heart racing, her blood oxygen levels low, she remained that same tranquil, agreeable person.

“She’s severely demented”, said the nurse, “It’ll be cruel if we overtreat her. Let’s just 
keep her comfortable.” This is code for, let her die.’

When I met Sylvia at 0630 she gazed at me, eyes wide. Was this recognition? The opposite? What, who, remained behind that enquiring gaze?
‘Hello, Sylvia, I am the new doctor.’
Sylvia, her face pale, yellowed, smiled. I thought of my mother, another placid smiler.
Sylvia spoke, a voice soft, barely reaching my hard ears.
I leaned over her and listened as she spoke again: “You’re the doctor.”  
Attending at her bedside in the early morning, clad in my running shorts, vivid cap and colourful singlet, I don’t look like anyone’s idea of a doctor  – or a runner. But Sylvia knew. 
These were not the words of one ‘severely demented.’ 

I called Bruno, made the call that relatives know will one day come, the call they dread: ‘Bruno, I’m the doctor caring for Sylvia. She has a fever. I thought you should know… She’s not in danger, but we need to decide what treatment will be best for her and I’d like you to come in and give me your advice.’ A lot of words, too many words. Words to paper over insecurity, uncertainty.
Bruno thanked me for calling. He asked, ‘When would you like me to come, Doctor?’
‘Any time that suits you, Bruno.’
‘No Doctor, you’re a busy man. My time is my own. When will it suit you best?’
We agreed to meet at nine-thirty.

I studied Sylvia’s file. There was a reason for her long stare – she has glaucoma. And diabetes which will make her vulnerable to infection.
I read the family’s biographical notes: ‘Sylvia is a gentle, happy, quiet and kind person; compliant; she has sons, husband, extended family, friends who visit her often; she likes fruit, enjoys stories on television; she understands, even though she answers with only a few words. Please speak to her slowly.’ 
Elsewhere I read a relative’s observation: ‘I believe Sylvia does not have the ability to consent to or decline treatment.’
Once again I thought of Mum, a patient who’d always agree with a doctor, always wish to defer, to oblige.

I found Sylvia’s End of Life Directives: ‘Keep her clean and dry and as free of pain as possible. Please do not provide therapy that is futile. In the event of acute deterioration or critical event, she may have IV fluids, IV antibiotics, CPR, defibrillation not more than twice, a short course of ventilation.’

I tried to decode the directives: the family allows resuscitation, ventilation and defibrillation – more or less Intensive Care – while excluding futile treatments. But you never know whether intensive treatments might be futile. You do know CPR must be vigorous to succeed. In the words of an Emergency Medicine Physician of my aquaintance, ‘If you don’t break any ribs you won’t save them.’  And short ventilation slides easily into prolonged. Dying is prolonged and deformed; and any living that remains is disfigured.
This constitutionally gentle soul, comfortable in her frailty, undistressed even in her febrile state, would she welcome such rough treatment? What roughness, which bodily incursions, can the family tolerate? 
I needed Bruno to help me untangle this nest of contradiction.

At nine-thirty, I found Bruno seated by Sylvia, holding her hand. On her bedside table, a pear, freshly peeled and sliced, waited Sylvia’s pleasure. I introduced myself. Once again I told Sylvia I was the doctor. She looked at me, then over to Bruno. He nodded and her wide face relaxed and fell into a smile. Since my earlier visit her temperature had fallen and her breathing improved.

I listened to the front of Sylvia’s chest. I wanted to examine further, to hear the breath sounds at the lung bases. Sylvia, aged, weak and ill, would need help to sit up. Ordinarily I’d ask a nurse to support her but Bruno was here. Sylvia would know, her body would remember the touch of Bruno’s hands.
‘Bruno, when I sit your wife up, will you hold her shoulders for me?’ 
I hauled Sylvia’s upper body upright and Bruno leaned forward and placed one hand on each shoulder and steadied her. My stethoscoped ears listened intently to the breath sounds. Faint crackling betrayed the pneumonia I suspected.

Pneumonia, the old person’s friend. Will antibiotics save Sylvia? ‘Bruno, this is pneumonia. It’s a dangerous illness. Do you want us to use antibiotics? We’d give them through a vein…’
But Bruno, raised in a time and a school where the doctor gave orders, replied: ‘You’re the doctor. Whatever you decide will be for the best.’ 

Deep in cogitation, I applied the stethoscope again. Eventually I looked up. Two large brown hands, the joints wrecked by time and work on the farm, supported Sylvia’s creamy shoulders. Bent forward, held by her man, Sylvia gazed into Bruno’s eyes. I noticed her right hand. Sylvia moved it back and forth along the inside of Bruno’s forearm. Up to the elbow, back down to the wrist, up, down, Sylvia’s fingers stroked Bruno’s skin.
The fingers caressing, moving upon the silence.
Two people, oblivious of this interloper, oblivious of all, man and woman made love and confounded me: where I had wondered how much treatment would be too much, now I sensed how much the two still gave and received from each other, how precious to each was time with the other. 
How much treatment will be enough? 

My Mother’s Amygdala

By Posted in Childhood, Family, Life Tagged , , , , , , , , , , , , 5 Comments

MumI am pretty sure my mother had an amygdala; every one of us does. If my friend Joe, who seems to know his amygdalas, is correct, Mum’s must have been smaller than most. He tells me the amygdala is the seat of fear in the brain.
Joe is a barrister. I remind him I am a doctor. “It’s fifty years since I last had need of any knowledge of the amygdala. How come you know about it?”
Joe says: “In my business it helps to keep up to date with neuroscience. Such things as the organ of fear can be important in court”. Which all makes sense for a criminal lawyer; but Joe does compensation cases only.

For a while I consider my mother. Then I describe her to Joe. Joe smiles. The more I speak of my mother the wider Joe’s smile.
“Mum lost her father to cancer when she was twelve. Then three years and one day later her mother died – “Mummy had rheumatic fever in her childhood. After Daddy went, she died of a broken heart.”
From the age of fifteen Mum and with her younger sister Doreen were raised by her widowed grandmother, “Gar”, a tender and enlightened and emancipated lady who taught her granddaughters to feel inferior to no-one on this earth. Nor superior, for that matter.

Mum failed her Intermediate Certificate, Year Ten in today’s language. She concluded she was a dunce (making no allowance for the effect on learning of the abrupt loss of a pair of parents) and left school. She attended secretarial college, worked as a bookkeeper, saved her salary and at the age of twenty set sail alone for Europe. The year was 1939. Her correspondence through that blithe passage via the Dutch East Indies into Western Europe is punctuated by increasingly urgent letters from Gar to hurry home: “There is going to be a war.”
Mum prepared for the war by sleeping on deck – “in case we were torpedoed” – on the last night at sea. Her ship made port in Fremantle on the day war was declared.

My parents raised us children in the country town of Leeton. Once a year we visited the great city of Melbourne where there were trams. Mum took me on a tram ride along Hawthorn Road, past the cemetery. “Mummy and Daddy are in there”, she remarked affably, indicating a long red brick wall. Behind the wall I glimpsed stone statues and crosses. Mum’s remark made no sense to me. ‘Mummy’ was on the tram with me and ‘Daddy’ was back home in Leeton. Mum explained: “It’s a cemetery. People who have died are buried there. That’s where my parents are.” Mum’s voice, warm with affection and remembered pleasure, sounded as it always did when she spoke of her mother and father. I heard no note of sadness. At seven years old I could only imagine losing parents as the absolute of perdition, of aloneness. A thought like the abyss. Mum seemed to think dying was a natural part of living; it happened but death didn’t spoil life. Not for Mum.

Mum told me once of a tram ride she took one night from Fitzroy Street to the home of her uncle (and co-guardian) in Beaconsfield Parade. “I was visiting a friend in St Kilda. I stayed later than I intended and I almost missed the last tram. I just caught it. In the morning I read in the paper that a young woman was murdered overnight at that same tram stop. She was killed some time soon after the last tram – my tram – left… Ever since I was fifteen I’ve known that people die. Last night just wasn’t my time.”

When we children were teenagers, now living in Melbourne, Mum sailed to Britain or Europe. She always stayed in the cheapest hotel, choosing the cheapest room that had private bathroom facilities. Invariably her accommodation was in some seedy district. One time she discovered she was staying in a brothel.”I was safely locked in my bedroom, when I heard a sound from the door. I looked up and I saw the door handle turning. Then the door that I’d locked opened. I sat quietly. No-one came in. The door closed and I heard footsteps walking away. Next day a man I didn’t know asked me to sleep with him. He couldn’t speak English but he showed quite clearly what he wanted in sign language. I couldn’t speak his language – which might have been Kurdish. But I showed him in sign language the answer was no.”
“How did you ‘show’ him?”
“I took out my photos of you four children. I told him your names and your ages. Your faces must have changed his mind.” I picture Mum recounting with delight details of her brood, regaling a puzzled predator with biography, smiling and brimming with goodwill in her natural belief that blood was thicker than semen. I think Mum’s sunny innocence would dent anyone’s carnal ardour.

Another trip, this one around the time of the Cuban missile crisis: mum decided to travel to Yugoslavia. Friends tried to talk her out of it, reminding her of the Cold War. Mum said, “I know it’s an Iron Curtain country, but I don’t think it’s very iron.” People in Tito’s concentration camp in the mountains probably felt both the iron and the cold. Mum, blessed in her innocence, did not sense the chill.

One week before her 92nd birthday, Mum lay in her bed in Cabrini Hospital and breathed. Breathing was a labour as Mum’s heart was failing. Between small gulps of oxygen Mum chatted cheerfully with me and Miriam, a neighbour. Suddenly she coughed. And coughed again and again. Wordless now, Mum at up straight and took great desperate gasps, one after another. Quickly Miriam excused herself and left. I turned up the oxygen flow and called a nurse, who raced in and injected some diuretic into Mum’s drip. Minutes later Mum was gulping comfortably again. She pulled off her oxygen mask and grinned: “Miriam and the nurse both thought I was going to croak, didn’t they?” – huge crooked grin now, now laughing – “Well, I didn’t!”
After that Mum and I talked seriously: I asked her if she had any late – possibly last – wishes. Day and night in the hospital she had her two living sons and her daughter and a tribe of grandchildren with her. Mum never wished for more than that.

Even the smallest amygdala will not save you when your heart is shot. Mum lived a few more days before falling asleep and dying without fear.

On the Passing of a Great Writer

By Posted in Books, Life, Literature Tagged , , , , , , , , , , 2 Comments

At the time of writing this, I have read scores of tributes to Gabriel Garcia Marquez, all of them as tweets. In other words, I have read nothing so far in mature media, (an expression that identifies me as a culturally bewildered old fart).

Great writers will have their say in traditional media.
Thus far the twitterers. Now me.

I was intrigued as I read these tweets. They poured, a growing stream of tributes, pausing at intervals, I suppose, to gather electronic breath, then flowing again. The process seemed as alive, as dynamic, as the flowing of a swift rivulet that paused on reaching rocks, only to cascade over and around them and plunge downstream in a Gabriel Garcia Marquezswelling spate. I felt excited by the energy I witnessed. I felt I heard the whisperings of legion one-hundred-and-thirty-character authors, everyone of them sounding forty years younger, forty years more at home here than I. Their twittering grew and grew to a chorus.
The energy was mildly thrilling as it gathered strength. It could frighten me if (forget “if”; think ‘\’when!”) it becomes a mob. I remember, too well I remember the cries at Cronulla; the cries of the mob as Dreyfus is cashiered (“Death to the Jew!”).
But I digress. Or do I digress? Only if the medium is not the message.

And what did I hear, what sense as the tweeting reached crescendo?
I heard love. I heard grateful appreciation. Marquez became a beloved writer. And his writing was the antithesis of the tweet. Substantial, considered, it paced itself with the uneven gait of the human.

I was impressed by the way tweeters reached for language worthy. None found his writing “awesome”; no-one said Marquez was “amazing”. No-one buried him in dead language.
Instead they offered back beloved lines. I record the four most quoted in ascending order of popularity:

Fourth: The only regret I will have in dying is if it is not for love.

Third: Nothing in this world was more difficult than love.

Second: Nobody deserves your tears, but whoever deserves them will never make you cry.

First: What matters in life is not what happens to you but what your remember and how you remember it.

Of these the first three are switches planted onto the pages of Marquez’ writing that light up a remembered feeling, an emotion recognised by the grateful reader.
The lines on memory appear more elusive than allusive. Subtle, demanding a pause, requiring meditation, the memory quote speaks to all who are mortal of what might remain, of the immortal.

What is my own response to Garcia Marquez’ writing? People call it magic realism. I recognise something older. I hear the thrust of story in the bud, bursting into flower. I hear the pulsing of the “Thousand Nights and One Night”. I hear storytelling.

 

Whale Mourning at Wilson’s Prom

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My father walked these hills and steeps:

Woke early ever, walked rugged rockstrewn track

To the lookout, and back. Now he sleeps

Forever; and I rise with the sun

 

On this second day of the last new moon,

Of the dying year;

And sound the shofar, the ram’s horn warning*,

Then go for a run on a crystal morning.

 

My Father walked till his dying year; I follow his track

Across the bridge,

Then up the hill and over a ridge –

Then back; pausing to view a sapphire sea.

 

High here, on air, at Wamoom**, this southern

End of a continent,

Comes remembrance, a fifth element:

Midst earth and water I stand, content,

 

Basking in the gentle fire of an early sun

Then turn

To start the slog and gasp and sweat – up hills

And tracks on the ridge of the returning run.

 

Stop! – cries the voice of my companion

And turn!

And look out to sea, and see – there’s a whale!

I stop and turn and look – and sight the sail-

 

Shaped fin, the hump of back, the mammalian

Brown-black, a bruise

On the blue face of the sea. Now it sinks again

And as I smile, give thanks, and muse

 

It surfaces and plays, and sprays its spume

At the end of the dying year.

Another whale was here, beached, dead; while with my father

A decade ago, I saw it. We paid homage at its sandy tomb.

 

* Through the month of Ellul, Jews sound the ram’s horn, as a call to repent before the solemn days of the High Holydays.

**”Wamoom” is the Aboriginal name of Wilson’s Promontory.

Excerpt from My Fathers Compass by Howard Goldenberg. Hybrid 2007, 2008.