Losing Ben

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Ben MulherinIn the words of a 23-year-old of the Facebook generation, 'I'll be alright. But it will be crap for everyone else.'

Ben died quietly. He had no choice really, we turned off the machine. We had no choice really, that's how it's done now. Slowly, over 15 minutes his heart stopped. I was there, my hand never leaving his chest, dry eyed then. Stunned. The tears well up as I write, almost a year later like it was a day.

I remember his still, once strong body, but his form isn't good after weeks in intensive care. Tube feeding is not for body builders.

The oldest of our five, Ben studied science, medicine in his sights, healthy, not wealthy and wise beyond his years. What's that lump on your leg Ben? A cyst? Five months later and ... God, can this be happening to us?

The cubicle is a maze of high technology, administering life but not health. He lies etherised on the bed while the nurses come and go, whispering of Mike and Angelo, while tending syringes and cannulas, monitors and drains. The respirator pumps him up and down, graphing every breath. His vital signs are a roller-coaster, bad news one day, one hour, false hope the next.

Only two days before being put back into a coma, he went for his 'walk'. Debbie the physio came with her walking frame. No, said Ben, I'm going for a walk with James.

Thank you, James, for Ben's perfect day. For wheeling Ben and bed and portable life support into the sun of the car park. This is perfect, said Ben, sunglasses perched on his shaven head. What's with the sunnies Ben? The sun can give you cancer, he said. Two days later, he was gone.

*****

He did not tread lightly, our Ben. Brawny in body and mind, he knew the story, and if he was under illusions they were deliberately chosen. Physiology and anatomy were his loves, he read medical journals, he knew this cancerous malfunction was rare and probably fatal.

I'll be alright, he said near the end, but it will be crap for everyone else.

Ben decided how he would die. He died 'like a man' when that phrase meant something deep without offence. He found no sense in baring his heart, leaving others to suffer more. When the going gets tough, the tough get going. He did our mantra proud to the end, rejecting the doyens of pop-psychology who would open flood gates in the name of soggy authenticity.

He was not in denial, cancer sucks, he said, but he denied himself the luxury of self-pity, and the temptations to blame, to rage, to whinge. Even at his worst, Renae said (the nurse), he always managed a smile. Or when we woke him up, she said, at least a grunt of appreciation.

Somebody sends us Bruce Dawe's poem, 'Soliloquy for one dead'. Ah Joe, you never knew the whole of it ... But you had an inkling didn't you Ben? You knew.

*****

Dad will you make me a blog? Let friends know what's going on. Make it bilingual: English for the Aussies, Spanish for the Latin amigos. I called it Blogging Ben. No way, he said, call it BensGotCancer. He died five weeks and 40,000 visitors later, and never laid eyes on it. Ten months have gone in a blur and the counter ticks over a hundred times a day as friends and amigos hold onto him still.

Day in, day out, we open our eyes to the nightmare dream, the appalling emptiness, the constant presence of his absence. Thinking that somehow our wanting it will bring him back. Every day mother duck wakes up broken hearted. Irrationally guilty, stricken for one of her little ducks that will never come back.

Matthew his youngest brother, nine years old, has learned his lessons: if Ben can die so can anyone, Mum. He sleeps on the floor now, nursing his CD player, some distracting story endlessly looping him to sleep. There are three brothers in between, each managing it, ignoring it, hiding it, forgetting it, living with it in the ways they know and can. Getting on with living but forever changed.

I had to buy a suit for the funeral. Ben was fussy about clothes. I couldn't go to his funeral badly dressed. Shoes especially he noticed ... Oh Ben, how can you just leave us like this? Just up and off, while we wait, we weep, we wish so many things.

*****

And in the midst of it all, so much to be grateful for.

Grateful for doctors like Hui-li, dignified, diminutive, on her knees in the corridor massaging his back as he groans in chemotherapeutic agony.

Grateful for Mileva, the mischievous Armenian, breaking the rules of the kitchen to make hospital feel like home. It started after his op as I went in search of food and begged chips. It's out of hours, Mileva said, but she'd see what she could do. Chips arrived, Ben was grateful, and he'd made a friend for life. Never again would he want for sustenance. And later, as he lay oblivious and comatose, Mileva would visit still, offering silent prayers and tears at the end of his bed.

Grateful for world's best healthcare; Ben knew how the other half live. He grew up in Latin America and was constantly amazed at his treatment as he remembered the squalor of Hospital Padilla where medicine was pricey and doctors arrogant, where patients depended on family to bring them food, and where my broken rib was not diagnosed.

Grateful for mobile phones and messages, thousands of them saved now for posterity: his conversation with the world in the last few months.

Grateful for a medical specialist who knows he is not God. Spelling out possibilities but never making promises. It's a nasty one, he says, serious but also hopeful. We don't know much about it, but I'll tell you what I know. And later: Shall we take out your spleen Ben? It's your decision in the end. And finally: Shall we put you back into a coma Ben?

Grateful for Katrina and Sally and the flock of cancer-ward nursing staff who treated him like a person not a patient, who found his favourite icy-poles in the middle of the night when he couldn't eat anything else, who kept asking when Ben was returning from intensive care, surely knowing the odds were against him, who pencil-booked his favourite bed by the window, and who laughed with us and then cried when we lost him.

Grateful to have shared for 23 years and grateful for the untimely revelation of how much he taught his father about courage in living and dying well.

*****

A month after his death I return to my desk at the university. It is strewn with Ben notes from another time, of meetings and arrangements and contacts. A time when we strategised, against the odds, Ben from his hospital bed, as bureaucracy's human face was revealed and we battled to keep his studies alive. Special consideration, delayed exams, extensions until he was fit again.

I throw out the sticky notes, the names and emails and phone numbers of lecturers, all willing to see what slack they could cut him. Now it's done. He was awarded his degree, a posthumous fiddling of the books, and a letter from the Vice Chancellor.

How different it is to the last time I was in the office, my perspective so sharpened, so raw. I look out the window at the same view but a world forever changed. I think of my own work and wonder where's the sense? Where's life's balance between debilitating melancholia and stubborn optimism?

In the quad the students dance and flirt, oblivious to dying sons and life's fickle vindictiveness. Stop, I cry, stop and think. Stop and do now what you must to really live, and to die without regrets. Don't you know I have lost my son? Isn't it written on my face? Let me share my tears with you, let me tell you of him, of one just like you.

I rise from my desk, distracted, the emptiness in my chest rising in waves of tears again. I cross the lawn to the library to see his face in the basement, studying long hours among the periodicals. I cry at his absence and reminisce. Ben, who loved to study, revelling in the cut and thrust of debate. Ben with a bullet, a leader, who hated mediocrity. Ben, who knew me well and kept me sharp. Ben who wrestled with arrogance and humility, with where he was going in life. Oh Ben, you can't be gone ... you were so alive, so well, bursting with plans and promise.

I wander Lygon St and smell the pizza, remembering a father's joy of lunching with his sons. The privilege of sharing with adult children, full of futures to be carved, hungry for knowledge and spaghetti marinara.

*****

Time heals they say. But it's also a river that sweeps inexorably on. To a future, another place, far from the past that it panics us to leave. We tumble through the rapids, battered, gasping for breath, longing for peaceful waters far behind. Can't we pause for a moment, or better, go back? To savour the past and not to forget.

You'll get over it they say, those who have never known. But God forbid the sin of getting over it. Good grief is not forgetting, returning to normal, deleting. We live another normal now, and pray we always will, added lines of pain, and perhaps compassion, etched on face and heart. Greek widows dress in black. I shave my head.

As I pour my grief into the keyboard, I hear myself repeat myself. But that's how grief is, I guess. Day after day it comes and goes. For me the cycle is longer now, every two or three days returning with its vengeance. Today that heavy feeling in my chest is back. Like a black sneeze wanting out, a growing ball of tears that needs a lonely place to erupt.

His life in photos passes before me on the screensaver and I smile at the memories, forgetting for a moment that he's gone. Then it hits me again, rising from deep down, suppressed, arriving at my throat in groans too deep for words, with a fearful power, that, untethered, would wake the gods. Yes, son, it's crap for everyone else.


 Chris MulherinChris Mulherin is an Anglican minister living in Melbourne and currently writing a doctorate on science and religion. Ben's blog


Topic tags: Chris Mulherin, www.bensgotcancer.blogspot.com

 

 

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Existing comments

Beautiful. Just beautiful
Frank | 12 May 2010


Thank you
James | 12 May 2010


Thanks for that Chris, even as I contemplate the sodden handkerchief now lying in my desk. Nearly two years ago I similarly turned off life support for my wife. It doesn't get any easier. I thought initially - "you are lucky, you still have Mother Duck" but then I put myself in your shoes and imagined losing one of my children. It certainly is crap for everyone else. Give Mother Duck a good hug for me. She needs it.
Ian | 12 May 2010


Very touching!
Peter | 12 May 2010


Dear Chris, Mother Duck and Sons
I'm so sorry! If tears help, I'm with you. I pray God will help ease the pain.
glen avard | 12 May 2010


Dear man, The pain will lessen, but one does not `get over` such a tragedy...nor in a way would you want to.Only the love that binds you all together can make it bearable, and the silent presence of the ONE in that who shares it, walks with you, even if it may seem such a ridiculous cliche now.Life does go on....I know, another cliche!
eugene | 12 May 2010


Thank you Chris, for a most moving revelation of your feelings after the death of Ben.I will keep you all in my prayers.
Gabrielle | 12 May 2010


Thank you.
Helen Bergen | 12 May 2010


Thank you for sharing. Very moving.
Naomi | 12 May 2010


Thank you
Dan | 12 May 2010


thank you so much for your kindness in sharing your thoughts with us ... you let me cry for all the sadnesses. How proud a Dad ... and also hugs for Ben's mum
denise | 12 May 2010


Thank you Chris. Such eloquent expression of grief is rare. I hope it was in some ways helpful for you. It was for me. I sense your Ben has taught well.
Allen | 12 May 2010


Thanks Chris.

Thinking of you and your family!
Andrew | 12 May 2010


Thank you for your essay. It gives those of us not in your situation a glimpse into heavy grief, which we pray we will not have to bear. Thank you, Chris
jaymz | 12 May 2010


Having just lost a nephew in tragic conditions followed by his mother (sister-in-law) of cancer 3 months later and being in the nursing profession in an earlier life, thank you Chris this helped on a number of levels.
Mary Anne | 12 May 2010


Thanks Chris. It is 20 years since our eldest daughter was killed in a car accident. None of that long drawn out waiting and watching you experienced. The pain does lessen but the gap is always there. It drove me to pursue my writing path.
Jean Sietzema-Dickson | 12 May 2010


My darling husband of three weeks died of leukaemia three years ago. He lived well and he died well. As you write: 'You'll get over it they say, those who have never known.' So true. I am being transformed by this pain and the experience of loving and losing this wonderful man. But it is crap.
Helena Sweeney | 12 May 2010


What an honest, profound and helpful revelation of grief.

Mostly to-day people try to escape from pain, be it of mind or body.

. We must not upset the one who is suffering.

We cannot bear to see someone cry.

We immediately change the subject. All very kind and thoughtful, but may also be selfish.

Those in pain are forced to put on a happy face , suppressing their true and necssary emotions.

Thank you for facing, and enduring your pain and unbearable grief.

Jesus shared his grief in the garden. He told the apostles how he felt.

I don't believe the old adage that 'time heals all things.' I think sometimes it can get worse with time.

Somehow a little spark gets into your soul, to keep you alive.

To my mind, the more you have loved the more the grief

My thoughts and prayers are with you and your family.

Thank you for the help you have assuredly given to others.
Bernie Introna | 12 May 2010


Thank you Chris from a mother duck who wakes up every day brokenhearted, fretting and yearning for the beautiful son who has been lost.
Marg D | 13 May 2010


Thanks Chris for your generosity in sharing your story with us.
Anne Benjamin | 13 May 2010


Dear Chris,
Thank you. I think of Ben often. A beautiful life snatched so unfairly away.
Dr Tony | 14 May 2010


This piece of writing, the experience, speaks for itself.
Kiku | 14 May 2010


Thank you for your generosity in inviting us into the world of your family at this tender time. I feel humbled by your honesty, have shed tears in the reading and have a quiet sense of pride in humanity in the way you have shared your experiences.
Bobsie | 14 May 2010


I'm crying with you.
Joyce Parkes | 14 May 2010


Un abrazo fuerte, Amigo.
Miguelito | 14 May 2010


Thank you for the account of Ben's short life and his courage. We lost our daughter, 33yo just 3 yrs ago in a car crash leaving husband & 3 very young sons (now 10,6 & 3). The absence is ever present and the tears flow often each day for a beautiful gracious daughter, sister, mother & friend to many.She IS with us still and we WILL be together in the GLORIOUS KINGDOM. Meantime she helps us care for HER Boys.May she & Ben Rest in Peace & Rise in Glory. Their fine examples are for us ALL1
The Revd Warren L Wade -Priest in ACCA/TAC | 15 May 2010


Thanks so much for sharing that Chris - it is a tonic to have that insight. Albeit from a much greater distance, we too miss Ben - he and Tim were a blessing to our family.
Ian | 16 May 2010


Praying to the Lord for you and your family Chris!
John | 19 May 2010


Thankyou for sharing your story. I am another mother duck who has lost one of her own. Our beautiful son Chris, the eldest of five died last June at the age of 24 from a rare form of encephalitis. This cruel disease took him from us over 4 terrible months. As you said, the constant presence of his absence will be with us forever. The memories and stories of him give some comfort but it is all the "what might have beens" that seem the hardest to bear. My thoughts are with you and all your family. Thank-you
Cathy | 23 May 2010


What a beautiful son; your essay is a testament to your love for him and your grief at his loss. I can't say thank you, though, as the story of your experience awakens my deepest fear. I don't know that we're built to cope with the loss of our children. May your faith and the love of those around you see you through.
Elise | 24 May 2010


I unexpectedly came across your amazing tribute to Ben and your precious family bonds and parenting. It inspired me on many levels as well as bringing me undone as I travelled back to 1987 when David, 34 years young and my life partner died of a rare cancer. I discovered love is forever and so are our emotions, and I feel weaker, richer and stronger for it...I hope you find your peace. I loved your writing and you sound an amazing father.
Liz Lowe | 25 August 2010


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