Tag Archives: disability

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

Ogholotse and Adam

By Posted in Life, Opinion Tagged , , , , , , , 4 Comments

This blog has seen me leap into print recently in a familiar posture of righteous urging on the subjects of the public humiliation of a footballer and the plight of a lady with a disability. Brace yourself for more righteousness.

I wrote of my schoolmate, Hilary, a social worker and ceramicist – did I mention Hilary’s ceramics? – who works from home, counseling the lost and confused, supervising tribes of fellow therapists, contributing to the health of persons and, through her taxpaying, to the health of the economy. Hilary is an agent for good. She is not a leaner. Financially stringent governments should love Hilaries.

This particular Hilary has a couple of disabilities, however: she is not young and she has a touch of quadriplegia. She needs carers around the clock. She pays these persons from her earnings and they in turn pay taxes. No leaners here.

One of Hilary’s two carers, Ilaisaane – called Saane – is not a citizen of this country. A skilled person (she’s a State Enrolled Nurse), Saane comes from Tonga. She’s allowed to stay here as the spouse of another person, who holds a skilled immigrant visa. That person, Ogholotse, is highly skilled. A graduate of Melbourne’s esteemed RMIT University, OG as he’s called, holds both Bachelor and Masters degrees in multimedia. (As an unimaginative unimedium person I am bemused that such a skill might exist.) However, exist it does and an employer exists who needed someone with Ogholotse’s skill. So the someone employed him, he came into the country, he worked and he paid his taxes. Another non-leaner. Everyone is happy. Ilaisaane cares expertly, intimately, tenderly for Hilary in a relationship rich in mutual respect.

Everyone’s a winner.

So far so good. But hard times struck the employer and OG was let go. He has sought alternative employment in his sanctioned area of skill, but he has not found it.

Now Australia will let OG go and with him Immigration rules we must let Ilaisaane go. Being near-indispensible, once Ilaisaane goes, Hilary just might go too: Hilary’s going would be into institutional care, into a life of dependency, of expensive involuntary leaning.

Everyone loses.

There’s a simple solution: OG needs to find a job. RMIT graduates are the most work-ready, highly employable skilled persons in industry. Employers love RMIT graduates, seeking them out and hiring them even in times of deep economic recession. At present we don’t have a recession. Skilled jobs exist. Odd that Ogholotse doesn’t have one. He’s strong and healthy and clever, he’s experienced, willing and personable. And as you’ll see from the photo, he enjoys that unfair advantage in job-seeking of being good looking.

  
What can be his problem? Sure, he’s black. That couldn’t be his problem, surely. Not here, not in Australia. We aren’t racists. Ask Adam Goodes.
Postcript:

If you happen to be or to know a colour blind employer who needs a person skilled in multimedia, please write urgently to Hilary at quincetree@gmail.com. Time is very short.
Previous post on Hilary’s story http://wp.me/p2QU0B-Mg

“Slip me a Mickey”

By Posted in Family, Life, Literature, Medical Tagged , , , , , , , , 10 Comments

Mum is about sixty. She speaks with her doctor son, aged thirty. He’s still a bit wet behind his medical ears.

Mum: One of these days I’ll have stroke darling…

Son, provoked: How can you know that, Mum? I’m a doctor and I’m not able to predict that. You can’t know you’ll have a stroke.

Mum: Well, I do have high blood pressure and my cholesterol is high. Those are the factors. Anyway, when I do, I want you to slip me a Mickey.

Son: You mean kill you? No! I won’t.

Mum: Alright, darling.

Son, contrite: Look Mum, if you do have a stroke, I’ll come and visit you every day. I’ll read every word of Dickens to you. And after that, I’ll read all of Shakespeare to you.

Mum: Thank you darling. That would be nice.

 

Son, six months later: Mum, remember how you asked me to knock you off if you had a stroke? Would you still want me to do that?

Mum: No, certainly not.

Son, triumphant: You see Mum, if you’d had a stroke, I’d have killed you – and you wouldn’t have wanted to be dead.

Mum: No, darling – I’d have been dead and happy, and you’d be alive and feeling guilty.

 

 

Fifteen years pass. Mum goes to see the Australian Ballet and suffers a mini-stroke. Her doctor – a specialist, not her son – starts her on aspirin. She suffers a cerebral thrombosis, a full sized stroke. Her hand is weakened and her memory is patchy. Her specialist decides she needs warfarin – rat poison – to thin her blood. After watching ”In the Name of the Father” with her doctor son she vomits suddenly. Son helps her to her feet, but she falls, a dead weight. Her son and her daughter in law heave and drag her to the car. They drive to hospital.

Mum’s blood has become so thin she’s suffered a cerebral haemorrhage. Her specialist doubts she will recover consciousness. She does so. While she remains in her coma someone in the hospital relieves her of her engagement ring. She never sees it again.

Mum wakes up. Half her hindbrain is demolished and with it her balance and her ability to walk. Her champagne voice loses its sparkle. She speaks huskily now, coughing often, searching for sounds to carry her meanings.

She says to her doctor son: I reckon the next stroke will get me.

What do you mean?

It will see me out. Dead.

Son, not irritably: I don’t know, Mum. How can anyone know?

Mum: I’ve had two strokes now. Isn’t that what they say – ‘three strokes and you’re out’?

The son laughs. The old lady laughs too. A stroke is a nuisance – “boring” is her word for it – but time spent with any of her children is recompense.

Belatedly the son recalls his promise – Dickens! Shakespeare! Mum, remember I promised to read novels and plays to you?

Did you darling?

I did promise, but I never came good.

Never mind, darling.
She squeezes his hand with her own – the one that still works.

The son launches into reminiscences of the time, more than thirty years distant, when they lived in the country. His stories bring back the days when her young body obeyed her quick mind, when it was she who nurtured the stumbling child. He finishes his vignette. The mother smiles, squeezes his hand again and thanks him: That was lovely darling.

Son: You know what, Mum? I’ve got lots of stories from those times. How would you like it if I were to write them all down and read them to you?

Mum: I’d love that darling.

He starts to write the stories. He supplies them to Mum and to her oldest friend from those days. The two old ladies feast their tear glands on the stories.

 

Mum needs a helper now to shower herself. Sometimes the helper takes leave and bathing her falls to a son, the oldest one, not the doctor.

Mum: Isn’t this awful for you, darling? Bathing an old wreck?

Eldest son: When I soap your back, I remember with my skin how you soaped me. It’s a return, a coming home. I bless myself for the privilege.

 

The stairs in her old home are beyond Mum. The doctor son and his grown son carry her up and down on wrist-linked hands. Mum asks: Don’t you boys want to euthanase me?

Son: At last I can do something for you in return for carrying me all my life.

 

Mum and Dad settle into their new single storey home. After a time, the doctor son asks: Mum, do you remember a conversation many years ago? You wanted me to give you a fatal overdose of a sedative if you ever suffered a stroke. Now that you’ve suffered a few of them, do you still feel the same?

Oh no, dear. Certainly not. Do you know why?

Her emphasis makes her wheeze and cough.

Son waits for the squall to pass: No Mum. Why?

Mum: I thought if I suffered a stroke I’d be handicapped; and I was right. And if I was handicapped, I’d lose my independence; and I was right. I thought if I lost my independence I’d be a burden; and I was wrong.

A pause.

You know – I’ve never been happier in my life.

He stares at his mother.

Mum: And the reason is I am surrounded by people who love me.

 

 

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OVERPOWERING REASONS TO SPONSOR ME IN THE BOSTON MARATHON

By Posted in Life, Running, Travel Tagged , , , , , , , , 2 Comments

The Boston Marathon is the premier amateur marathon in the world. “Amateur” is surely an oxymoron – who could love running up 26.2 miles of hills, let alone 42.185 kilometres?
Answer: only an oxy moron would love that – ie a moron who enjoys oxygen deficit.

Your representative in this blue-riband, black-chip event is such an oxymoron.

I have been training every day, dainty little 5-10 kilometer runs in the Central Australian desert and Israel’s Mediterranean coast – runs that will prepare me for Boston as usefully as picking dandelions for a world heavyweight bout. However, as of yesterday, all has changed, changed utterly: a terrible fitness is born.

There I was slouching towards Bethlehem when I lost my way. The result? I ran for three hours. I became a distance runner once again. I loved the feeling. I can’t wait for next Sunday’s four-hour run, after which I’ll taper my training. First time in a decade of marathons that I’ll have reached a high-enough point of preparation from which tapering is feasible.

Following yesterday’s odyssey I looked at my legs: they are indeed beautiful. Even the varicose veins at the back are beautiful. If there is a demand, I will send photos of the veins to my donors.

Around mid-year, Hybrid Publishers will publish my new book, a novel (titled Carrots and Jaffas). This is a sensational creation in which a pair of humans of opposite genders meet, fall in love, fall into bed, copulate, conceive and deliver – a story. If you love it half as much as I do, you will be thrilled to receive a copy of the first edition, signed and inscribed by the author. All you have to do is to read the attached Unusual Offer. The largest subscriber/donor wins the copy.

Every donor of $50.00 or more will receive a signed copy of my earlier book, My Father’s Compass. This book, too, was HIGHLY recommended by the author.

Avoid the rush: donate now, donate often.
Many of you have friends who have a lot of money and very large hearts; please pass on my offer to them.

If you look at where the money is going at http://hopkintonrespite.com or http://www.youtube.com/user/HopkintonRespiteTV , you won’t need the special offer to feel good.

Go for it! All you need to do to say goodbye to your money is to sponsor me in the Boston Marathon.

Time is short: the marathon will be run – as always – on Patriots Day, falling this year on 15 April, 2013. Please send your donations directly through this link– http://www.razoo.com/Pheidipides-Foolproof-Investment-Opportunity

I’ll send you news from now until the aftermath (is there ever a beforemath?) of the marathon.

Howard/Pheidipides Goldenberg

Book Alert

By Posted in Books, Medical Tagged , , , , , , , , , , , , Leave a comment

a long time ago i tutored a group of medical students at melbourne university

one of these was dominic wilkinson

dominic was an unusual student, interested in ethics, coffee, dumb animals and conversation

he was built like a greyhound*, played violin in an orchestra, created, directed and acted in commercial theatre, pedalled a bike everywhere, ran marathons, ate no food that had a mother and eschewed leather shoes

he read widely, had a quirky sense of humour and was far too bright to be a doctor.

straight away i recognized dominic as a fellow dilettant

i knew he would find no time to study for exams and that he would fail

and go on to some more creative field

i was nearly correct: dominic passed his exams, graduating at the head 9780199669431of his elite class

he trained in paediatrics (too easy), ethics (too simple), philosophy

( that gives makes my brain ache)

he won a rare and prized scholarship to oxford where he conquered,

returning to oz with more degrees than a thermometer

five minutes later he is a professor in adelaide and has written this book

i was right: i KNEW he’d turn his mind to something creative

if you have a a baby, plan to make one or ever were one, buy dominic’s book

or even if you just enjoy sex, because you never know…

howard goldenberg

*an expression of one of my patients: “like a greyhound – all dick and ribs”

Now for the official blurb:

In ancient Rome parents would consult the priestess Carmentis shortly after birth to obtain prophecies of the future of their newborn infant. Today, parents and doctors of critically ill children consult a different oracle. Neuroimaging provides a vision of the child’s future, particularly of the nature and severity of any disability. Based on the results of brain scans and other tests doctors and parents face heart-breaking decisions about whether or not to continue intensive treatment or to allow the child to die.

Paediatrician and ethicist Dominic Wilkinson looks at the profound and contentious ethical issues facing those who work in intensive care caring for critically ill children and infants. When should infants or children be allowed to die? How accurate are predictions of future quality of life? How much say should parents have in these decisions? How should they deal with uncertainty about the future? He combines philosophy, medicine and science to shed light on current and future dilemmas.”

Death or Disability? The Carmentis Machine and decision-making for critically ill children is published by Oxford University Press. It is now available via the OUP website on the link above, or via Amazon UK, France, Canada, US (released in March) or Book Depository (free postage)