A Dream

In early 2018, fourteen of Clan Goldenberg descend on a vast villa in the Dominican republic. We have not been long in DR before we start to feel its bite. While we reside in a vast house of huge rooms and lush grounds the world outside is very different. Simply put, the people are poor. While the sun-and rain-drenched soil feeds most of its 13 million people more-or-less adequately, measures of relative poverty place DR 19th-poorest on the planet. Schooling is free but generally brief and standards are deplorable. We read of teenage pregnancy – 28 percent of girls aged eleven to fifteen have undergone termination of pregnancy. Unemployment and sub-employment drive a cycle of generational poverty. The poor attend poorer schools for a shorter period. They leave, they marry too young, and it all starts again.

There is, it appears, something of a solution. For every additional year that a girl stays at primary school there accrues a 3% rise in her employability. But for every additional year of high schooling, employability rises 26%.

 

 

So far, so regrettably common. But there’s something uncommon about this particular half-island. In 1938 two of the worst humans of modern history found themselves at cross purposes. While Hitler worked to persecute, and finally to exterminate Jews, Trujillo, the Dominican butcher-dictator, strove to save them.

At the ill-fated Evian Conference, convened by Roosevelt to find countries of shelter for Jews, thirty-two nations gathered. The setting was elegant, the food sublime, the sentiments uniformly noble. The outcome was disastrous: America remained obdurately closed; Britain accepted children but kept Palestine closed to Jewish immigration; vast, empty Australia piously declared: we are a young nation without a racial problem (really?) and we have no wish to import one…

 

 

Nation number 32, the Dominican Republic, vowed to take 100,000 Jews.  Why did Trujillo make his offer? While opinion is divided about his motivation it seems he was anxious to improve his image following his recent massacre of 20,000 of his countrymen. Trujillo, himself partly black, was a racist who used to powder his face white for public appearances. He stated he sought Jewish immigration to raise the standards of Dominican agriculture and industry. He added openly his wish that by intermarrying with locals, European Jews would whiten his citizenry.

It is this mixed package of information that bites us. In Sosua, in the neglected north, we find a remnant Jewish community, proudly Dominican, proudly Jewish, unashamedly religiously ‘impure’. Sosua speaks to the grateful heart. A friend from New York helped to endow a school here for the children of the poorest, dedicating it to the memory of his mother Flora, herself an early childhood educator.

Sosua bit our friend and it bit my family too. We are accommodated between Sosua and Cabarete in a gated community of vast villas with yawning ceilings, timbered walls and picture windows opening onto lush grounds. Cheerful Dominicans bearing weapons protect us (from cheerless Dominicans?), patrolling the grounds day and night. Their guns have the look of the blunderbuss, somehow horrific and laughable at the same time. It is all very comfortable – just a little too comfortable for comfort. A comfort from which our New York friend relieves himself by working relentlessly for the people of DR, both Gentile and Jewish.

Two days ago we visited the school named for Flora, a part of the DREAM Project. The drive from Sosua to Cabarete was punctuated by the now-raining, now-sunny weather and the familiar dicing with death of the weaving motocyclistas along the perpetually slippery roads.

When we reached Cabarete’s sole traffic light we turned right, as directed, along Callejon de Talloga. This little ribbon of road twists and turns though the Dominican village, a place vivid for its street life and stark for its street life. People here abide in evident vivacity and in evident want.

We become lost repeatedly in side streets too narrow for a U-turn. Few of the villagers speak English but everyone knows the two words, DREAM Project. Faces light up, people point, someone materializes as designated interpreter and directions are given.

The roads are narrow, footpaths are lacking, and soft human bodies share the roadway with battered cars, bikes, motorcycles and hungry dogs. Dwellings are tiny and insubstantial. They will not survive the next hurricane season. Eateries are very numerous, generally someone’s front room. Bright colours, lounging youths, slim-hipped schoolgirls, their bodies advancing to a ripeness far beyond their years, smiles everywhere, people moving with the grace of dancers; life is pinched but never mean.

We turn a corner and here are the DREAM Project’s Flora Rabinovitch premises. By chance our visit coincides with the inauguration of something. The fundraiser, a charming American called John, shepherds a small herd of pink visitors to an outdoor shelter where he explains the DREAM in fluent and quite accessible Spanish and in English.  Seated on the ground before us is a class of three-to five-year olds, the pupils of the beginners’ grade. The children observe deep decorum, their bodies unmoving, their grave faces a mute challenge to all: behold my irresistible humanity.

 

 

The fundraising man is handsome, utterly charming, and he is paid to charm us. He certainly charmed me. If he told me he was going to campaign for the re-election of the incumbent President of the United States I would probably follow him and drink at his Tea Party.

But charm is needless. Outside on the street the need is visible and unpretty. Here in the bricks and flesh of the school is a serious gesture towards cure. John-the-Charming reels off figures and facts: We now have ten regional and rural schools, we have 750 students, we teach by the Montessori System…

 

 

Montessori! My own children attended a Montessori school. It stands for a learning which is neither rigid nor structured; rather the child chooses what to task to learn, and having once learned it, moves onto another. The teacher explains: The child learns tasks of living. We prepare the child for life at each child’s pace. The pace can be quick: many of our four-year olds are reading.

In the USA Montessori means private; private means money. These kids of the DREAM receive schooling that most Yanquis can only dream of.

  

 

We sweat for a while in the blaze of day then follow John and the teacher to the classroom of Beginners. The flesh and curls teacher closely resembles the young woman of the billboard, at work among her charges. We stand, towering above children who are impossibly small, impossibly beautiful and so, so solemn.

The children will invite you to come and sit. They will teach you what they have mastered.

 

 

One child takes my hand in hers and sits me down at a tiny table. She turns, walks a little distance to some shelves where she selects a tray, which she carries studiously to our table. She sits. Upon the tray I see small sheets of coloured paper and a small bucket filled with sharpened pencils. I ask her name. Facing downward she makes a small sound which I cannot make out. Rather than disturb her composure by asking again, I hold my peace.  My nameless little teacher takes a yellow pencil and traces a fairly straight line on the bottle-green page. At the termination of the line she draws a roughly circular shape. Gravely she looks up. I nod. Once again Anonymous Child draws something linear which runs to and joins something circular. I might be looking at a balloon on a string, an olive on a twig, or a circle and a line. I nod again. Little teacher hands me a pencil and I do my best to emulate the task she has mastered and taught me.

My lesson is over. I thank the small teacher and approach the adult teacher. I describe an outback school in Australia’s Top End where I saw undernourished children, and where the school feeds them. The pupils eat two hot meals a day on every school day, their sole reliable nutrition. Does the DREAM in Cabarete feed these kids? At mid-morning we have Snack. The government supplies milk and bread. The school supplies cookies. At lunchtime some children have no food and we teachers feed them from the lunches we bring from home. At the end of the day we give leftover bread and milk to children of hungry families to take home.

It’s time to go. A quiet word to John Charming. Yes, the school does accept donationsOne hundred percent of donated money goes to work in the classrooms.

I trust the DREAM. I donate more than I imagined I might at http://www.dominicandream.org/ and so can you.

Goodbye My Friend

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.

Summer Stories 2: Chilled Bill and the Blue Baby

At medical school in Melbourne I met a tall bloke with a hyphen in his surname. His forename was Bill. He was bigger than I and much smarter. Bill came from Tasmania. In Melbourne Bill met Sally, a nurse, also from Tasmania. Sally too had a hyphen. The two married and they hyphenated each other ever after.

My first clear memory of Bill is of finding him in shorts and a short sleeved shirt, seated at his desk one evening in his room at Farrer Hall. The window was open and Melbourne’s winter breezes fluttered the curtains and cooled the room. Bill asked if I’d like to join him in a run. I hadn’t run since schooldays but I said yes.

We ran hard and long through the cold evening. We met and climbed hills, we plunged down the further side, reckless and joyful, we saw our breath white and vaporous in the street lights. Like Falstaff and the young King Hal we heard the chimes at midnight. We ran and our chests burned, and we kept going until we had outrun all chill. From that day to this I have run. It was Bill who started it.

Bill and the hyphenated Sally started making babies. The first was a girl, Joanna. She was born blue. For a year or more Joanna stayed blue; there was hole in her heart. Bill and Sally travelled to Auckland where the reigning champion repairer of babies’ hearts fixed up Joanna’s. A second baby, Jackie, followed Joanna into the world. Jackie was pink, hale and whole.

Annette and I and our own pink baby visited the Hyphens in Auckland. I took a picture of three pink toddlers laughing themselves silly in a bathtub in Auckland.

Eighteen years later I visited northern Tasmania for the ritual removal of a foreskin. While there I visited Bill and Sally. Joanna, by now a physio student in Melbourne, was also visiting. Still pink, Joanna had become a runner. We went for a run together, Jo and I. We ran hard and long through the cold evening. We met and climbed hills, we plunged down the further side, reckless and joyful, we saw our breath white and vaporous in the street lights. Like Falstaff and the young King Hal we heard the chimes at midnight. We ran and our chests burned, and we kept going until we had outrun all chill.

Such a runner was Jo that she’d won the Burnie 10K in open company as a junior. She went on to represent Australia in the World Junior Olympics in Rumania.

Back in Tasmania recently (for medical work that endangered no foreskins) I looked up Bill and Sally. Bill’s total knee replacement surgery of two months ago has been a success. He’s about ready to go running again.

The photograph shows Bill and Sally and the author’s grandson Toby. Toby is a brave and tough runner.

The Continuing Silence

Paul, beloved friend,

Are you there?

Can you hear me, can you hear or feel or know the love I send?

Three weeks, four, have passed without a letter from my friend.

My friend kept me informed: he told me of the tribe of cats who lived in his caritas, his agape, his lovingkindness.  He called each of them by name.

My friend wrote of the roadrunner (likewise given a name; he kept me apprised of the rattlesnakes that swarmed in his wilderness places, as well as of the evangelist rattlesnakes on tv, and of the rattlesnakes who called by phone to extort from him in the name of righteousness.

My friend wrote of his work in the rivers of venereal pus that flowed among his captive patients in WWII. He wrote of aviation, of the sober joys and disciplines of flight. He wrote of his instructor, one Pemberton, whose memory and example he cherished.

My friend taught this doctor, a long generation younger than he, much of the medicine that had escaped him in his undergraduate days, and that eluded him until the happy day that Paul strode into his life and became a preceptor.

My friend wrote of prayer, of his habitation in the house of prayer.

My friend wrote on his bended knees as he prayed for his fracturing nation.

My friend sent me funny stories, he sent me risque stories, he sent me the news from the frontiers of science, and he sent me the news of tabloid headline that were of little science.These he derided with fine despatch.

My friend wrote often of the good people he had known, people who have long passed but whose good name and memory he kept alive with his remarkable recall and his great respect.

My friend wrote of Beverley who was the light of his life and the fire of his loins. He revered her, he missed and he yearned for her perpetually. Of her he wrote, ‘Great was the joy in heaven when she entered that kingdom’.

My friend’s body was wearying, wearing out, but his mind remained scythe-sharp.

My friend, his integrity unbending, was weakened by the cheating and the chicanery of the mendicants who plagued him. I felt Paul’s righteous being was affronted and his spirit distressed by these cheats.

My friend had standards and he never wavered.

My friend loved the human frame, the creation whose anatomy and parts he new so well. He saw in that frame the work of his Creator.

My friend wrote only weeks ago to report evidence of brain function persisting AFTER death.  What did he think of that? What now, stricken mute by stroke, does Paul think?

How are the mighty fallen.

My friend wrote to me with love. He wrote and he told me he was ready.

I am not ready.

Who, of Paul’s eighty faithful readers, can be ready?

Paul, I know nought of those awaiting your arrival above, but here on earth, great will the weeping if you leave us.

Paul, can you hear me?

Do you know our love?

Paul?

Paul?

Howard

Writing into the Silence

Ten years ago an extremely distant relative by marriage, an aged veteran of WWII, commanded me to send a copy of my first book to his wartime senior officer, who became his enduring friend. The book in question (‘My Father’s Compass’, Hybrid, 2007) tells of my relationship with my father, a righteous and loving man who has been my lifelong inspiration. The relative said, ‘Paul will enjoy that book.’

So I obeyed. Paul read my book and enjoyed becoming acquainted with my father, a man like Paul, of unwavering principle.

A correspondence followed. Seven emails a day informed me of Paul’s take on the news. He disapproved of Obama, and of his successor as President; much of Islam (as portrayed in the popular press) offended him as did illegal immigrants. He disapproved of gun control measures (‘if you take weapons away from the good people, we’ll be defenceless against the bad people’). He had a close relationship with God and the Republican cause. He loved humanity broadly. He loved his family with a proud particularity, and he nurtured tenderly the numerous stray cats and partially tame birds who adopted him.

My email feed from Phoenix Arizona included Paul’s never-dull reports on the weather – its extremity and its beauty – on mushroom toxicology, on rattlesnake behaviour and on the conduct of those human snakes who conducted relentless scamming campaigns aimed to impoverish him. He loathed millionaire TV evangelists. He warned Israel’s enemies that ‘Jews will not go quietly to the showers again’. He warned the dictator of North Korea of the obliteration of his country if he started military adventures against the USA. Paul loved his country and he suffered the fiercest extremes of spiritual agony when faced with the horrifying (to him) electoral choice between Clinton and her opponent. While many found that choice troubling, it distressed Paul, so seriously did he take his duties as a citizen.

In due course I met Paul in the flesh, enjoying his company in the house of his daughter Ann. Ann drove us to the sequoia redwoods nearby her California home, where she took a photo of those ancient trees towering over her ancient father, who in turn towered over me.

On a later trip I visited Paul in his Phoenix home where we sat on the porch enjoying the desert sun and where Paul smoked his constitutional cigar. I promised myself I’d visit again in February 2019 when Paul would turn one hundred.

A couple of weekends ago the emails from Phoenix came abruptly to a halt. Then the following appeared on my screen:

Good day all!

 

This is John Jarrett, Paul’s youngest son.

 

On Sunday, November 7th while Paul was getting ready to attend church, he suffered a pretty severe TIA, transient ischemic attack, which has put him under the weather. He has been having some difficulties in his daily routine so we have all been with him 24/7 until he recuperates.

 

Thanks for your thoughts and prayers and I know he’ll be back on the computer as soon as he can. He loves emails, so keep them coming!

 

John

 

 

I wrote to John, with my hopes and prayers for his Dad’s health.

John wrote back:

He had showered and was preparing to drive to Church this past Sunday morning when he became impacted by dizziness and faintness… He’s also “put up” with a heart condition that brought bouts of angina at times and he has been having these TIA’s for several years ongoing…  He has a stricture where his aorta connects to the main part of his heart and was told he was not a candidate for a stint procedure… So, he soldiered on some more…

He had one “spell” (as my sister call’s it) about 3 weeks ago when she was visiting that took 3 or 4 days to show improvement after being 99% speechless for several hours.  About 1 year ago, he was unable to speak while doing business at the banking teller window…  He was getting Christmas gift envelopes for his children and grandchildren.  He tried to type emails Sunday evening but was unable to make is fingers hit the proper keys… The speech problem impacts his typing too it seems… He hears with difficulty (as has been his hearing deficiency for years now) but understands all that he is able to capture in terms of sounds.

He might recover from this most recent bout but each time, full or even partial recovery is becoming increasingly difficult. We are all praying that he improve to the extent he can enjoy his patio, cigars and cats again!  He is extremely weak in his legs/torso and has been impacted by some by minor paralysis in his right hand and arm too…

Fifteen days have passed since Paul’s son wrote. Fifteen days of email silence. In the silence I picture Paul suddenly, taken suddenly mute at the bank teller’s window, as he tries to buy gift envelopes for his children and grandchildren.

Conversations

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.

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

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