New South Wales farmer David Marsh was a speaker on regenerative agriculture at the recent 2013 Oceania EcoHealth symposium in Melbourne. He opened his presentation by saying:
“I’ve had an incredibly fortunate life. I had parents who were interested and interesting people, insatiably curious who gave us lots of experiences in life. I went to schools with inspirational teachers. I have a family that is very loving. I’m a farmer, which is an incredible privilege. And as part of all that, I’ve had the privilege of meeting lot of extraordinary people, who seem to have come at particular times, in serendipitous ways. When I’m ready for next step forward, someone or something seems to pop out of the woodwork, to help me go into the next space.”
What David didn’t mention at the time was that most people who know him and his family would say he’d also experienced great misfortune, in the death nearly seven years ago at the age of 21 of his beloved son Matthew, who had suffered through his life from a rare heart disorder.
He writes in a very moving piece below about Matthew’s life and death, of the impact of grief, and what good care can mean – from a heart surgeon, family and friends, the community, and of land.
David Marsh writes:
For a parent, nothing I can think of can be as bad as one of your children dying. If any of us was given prior knowledge that this was going to happen, we would be completely crushed and feel we would be unable to deal with it.
I am sure the feelings of loss and grief are as profound, whether it is a still birth when the parents are young or when you are 90 and your 60 year old child dies. It hits you right at the core of your being and leaves a massive gap in your existence.
Our son Matthew was born about six weeks prematurely in Canberra in 1986. I will never forget the look of love in his mother’s eyes when she first saw him … it was the visible expression of unconditional love!
However within a few days it was obvious Matthew had problems and he and we were soon in Baxter ward at the Royal Alexander Hospital for Children at Camperdown. My parents had met and fallen in love when they were both on the staff there after the end of World War Two.
We expect our children to be born healthy; when that doesn’t happen, everything changes.
My wife Mary had an amazing instinct for what was right for our tiny son, and we were fortunate to find a wonderful cardiologist, Dr John Celermajer, who diagnosed Matthew’s condition.
We were fortunate to have some wonderful friends who would come in and run our farm when we needed to be away with Matthew. We always spent every medical crisis together with him and can never forget the kindness of those who made that possible.
After a number of months we were given the green light to go home. This was very scary, as the care and staff in a big hospital make you feel incredibly safe.
Mary’s instincts guided Matthew throughout he shoals of childhood and he made steady progress.
There were years of visits to Sydney for progress assessments.
Matthew proved to be a fighter, and a real character who had a joyful outlook on life. He related to people naturally and seemed to have a big effect on all he met. He had a terrific sense of humour and was always laughing.
Through him we came in contact with a lot of other people who were dealing with children with congenital heart disease. We realised there were lots of people dealing with complex and worrying medical problems. These issues in families often lead to tensions and many relationships fail under the stress. My observation was that the women were incredibly steadfast and strong most of the time. Their ability to talk to each other about their children’s problems and their capacity to empathise was quite an inspiration to me.
Growing up, Matthew’s tolerance of activity was low: he could never walk more than 50 metres without stopping for a spell. No-one who has healthy children really gets the effect on all aspects of family life when someone has a health issue; it is all-pervasive.
Also, people do not know what to say to you when your baby is not well. Often folks would enquire as to how Matthew was going and many times it was obvious the answer was of little interest. Whilst this can be hurtful, I think we all struggle to put ourselves in others’ shoes, and be truly empathetic. Good listeners are a short commodity! But then some people are just extraordinary in their capacity to support you.
Carrying heavy burdens lightly
So how could I possibly say that after all this sadness I have had a fortunate life?
Having a child like Matthew was such an amazing privilege, he really taught us so much about life. In many ways he was just an ordinary young Australian boy, who had a most extraordinary attitude to life. He was an inspiration.
Matthew had a big medical challenge when he was 10. He developed a brain abscess and was paralysed down one side like a stroke victim. He spent nearly three months in hospital at Westmead getting antibiotics into his heart every six hours. He had two operations where he had a needle inserted into his brain to drain the abscess, and had a seizure after the second of these operations.
We had a four year old daughter, Alice by this time, and she and Mary lived at McDonald House next to the hospital. I slept in a fold-out bed next to Matthew, or in a parents’ room on the ward.
At last we came home and Matthew completed his schooling. Just standing was a big physical effort for him, he was quite exhausted most of the time but you would never know. He carried his burdens so lightly you could almost forget he had a profound underlying condition, and I think it was because he did not want to worry us.
Towards the end of 2006 he started to become unwell, his heart was enlarged, he had fluid build-up in his lungs, his liver and kidneys were overloaded with fluid, he had cardiac failure. He ended up in Royal Prince Alfred Hospital in Sydney where his cardiologist, Prof David Celermajer (the wonderful, caring son of Matthew’s first cardiologist Dr John Celermajer), advised that we needed to go up to St Vincent’s Hospital and get on the heart lung transplant program.
After treatment to get the excess fluid off, Matthew felt a bit better and came home for three months. However he died suddenly at home on the eve of Anzac Day 2007. Mary and I were both with him when he died. It was so swift there was not even time for a word, and not a look of fear or anguish on his beautiful face.
Matthew’s physical life ended but the force of his personality lived on and has continued to be a source of inspiration to us.
David Calermajer sent this message to us when I rang to tell him Matthew had died. His words are still a powerful reminder to us that Matthew’s attitude was extraordinary and that the relationships that had been forged in our family despite the ongoing concern for his welfare for 21 years, were perhaps unusual.
“I found it so sad yet appropriate that you had phoned me on ANZAC day to tell me of Matthew’s passing. He had in some senses been a soldier against the travails that fate had sent – determined, confident and brave, but in such a sweet and mild-mannered fashion.
As a child he had been asked to bear a psychological burden that few of us could imagine, as well as a physical burden with which he coped with courage, dignity and grace.
In some ways, he had an angel’s character’ and I always felt a little inspired and in awe of his “just get on with it” attitude. The fear was there, I guess, and certainly some vulnerability too, but his optimism and force of character were such that he could conquer them whilst remaining a soft and caring boy.
I can truly tell you that I cared for him a great deal and will never forget his courage and bravery in the face of his terrible illness. He was blessed, however, with two extraordinary parents, and I mean that very genuinely.
Your love shone through him, and that’s what helped him be strong. I hope his sweet nature and determination to be well, for as long as he was able, might give you a glimmer of a smile at times when you’ll just want to cry.
I and his other doctors were as one, in our admiration for this most special of young men, taken just far too soon.”
Whatever it was that we ‘did’, we did out of an instinct to always treat Matthew as just another member of the family.
One of the big dilemmas for parents with sick children is how much to tell them. Do you open right up and tell them the full implications of their situation? We felt this could have a negative impact on Matthew’s optimism, so we chose to be very open about what the technical aspects of his heart condition were, but that no one could really say what the timeline of his life would be. He, being a very intelligent young man informed himself by talking with his doctor after he turned 18, when his medical appointments did not include us.
Matthew’s funeral was attended by hundreds of people and the town stopped for his funeral procession, the students of his old school in Boorowa formed a guard of honour; it was all incredibly moving, but we were in a dazed state. I have often said to people since that making a difference does not require you to be a public hero, Matthew managed it by his quietly courageous attitude.
He graduated with a Diploma of Digital Animation from the Academy of Interactive Entertainment in Canberra, just after he died. Mary and I were struggling with life after losing our son, but we felt an instinct to go and receive his diploma at his graduation. The College had some counsellors who kept an eye on us; they all loved Matthew and their consideration for our feelings was very touching. A dignitary spoke some beautiful words about Matthew as we mounted the podium, then he removed his cap (?) and bowed low in a gesture of enormous respect. Although that was very hard on us, we are so glad we faced the demons of our emotions and did not shy away and avoid the occasion. You really could feel the energy of all the hearts in that auditorium willing us on.
One of his good friends, Shaun Riley went looking for a blog Matthew had started where they used to try out their writing skills on each other. After the funeral service Shaun told us he had found a bit of writing Matthew had done which reflected on his life and what it meant to him.
We would never have known this existed but, thanks to Shaun, we now have this treasured piece:
Life, Death and Other Miracles: written by Matthew Marsh November 2005
It is interesting that we only really think about how precious life is when someone near to us dies, or is on the fast track there.
Sorry if that sounded morbid, but really it’s odd.
My Grandfather died on Sunday, whilst I was on a plane from Brisbane to Canberra, and steadily contemplating my own mortality as we went through a rather nasty batch of turbulence. I found out that afternoon, around 3.
Death is something that I have come to accept over my course of being in and out of doctor’s offices, and my two long stints in hospital. When I was about ten, and suffered a cranial abscess – hospital was a cool place that had abundant quantities of ice-cream and Nintendo. That was until one morning, about half way through my ten week stay. I was subject to frequent CAT-Scans to monitor the size of the abscess, a process that started with fasting many hours prior to the scan.
I had organised for the nurses to bring me some vegemite on toast at 5 in the morning (when I inevitably woke quite frequently) so I could eat, and still have “not eaten’, for the designated time before the scan. 5 came and went, so did the scan….. alas, no vegemite arrived, nor did the nurses who had promised so earnestly to deliver. I became quite stroppy when I saw the nurses next, they apologised, and stated that they had forgotten.
I learnt several days later, that the reason for their disorganisation was that the young Chinese boy in the room next to me had chosen to pass away that morning, and they were attending to his body. It has been a rare occurrence when I have felt the same guilt and disgust I felt for myself that morning.
That is my first most memorable memory of death.
Not that I wasn’t aware of it prior to that experience…. My first chronological memory of death is when Mum’s aunt died… I was about 8.
Since my philosophical and emotional awakening to the concept of death at age ten, I have been interested in the subject of mortality in general, and especially my own. There was a stage of about two years, from the age of 12-14 when the concept terrified me…. I dreaded an early death.
This stage thankfully passed however, and I gradually became more accepting about death.
People often say to me-“it must be so hard being you, with your heart and all”, possibly not verbatim, but along those lines….
I am not conscious of having had a particularly hard, or depressing life… This burden has probably fallen more upon my parents, as, like most people, they would compare what I have to deal with to what a ‘normal’ person is like. I can understand that this would be an ongoing source of worry for them, even though it is only infrequently one for me. I will say, however, that ‘my lot’ has probably forced me to deal with issues and ideas (such as mortality), at a much younger age than most.
I started planning the music that will play at my funeral at about age fourteen.
The list has been constantly changing since that time when it comprised of “Lightning Crashes” by Live, “Brian’s Song” from the Life of Brian and “Ironic” by Alanis Morrisette. Currently, the List is “DOA” by Foo Fighters, “Everybody Hurts” by R.E.M., “Winning Days” by The Vines, and “Till Kingdom Come “ by Coldplay.
This is not something I sit down and plan… I don’t have it written down (well actually now I s’pose I do). But if I hear a song that moves me, or makes me laugh, it will probably end up on the list.
Someone once told me this was a very morbid thing to do…I disagree; it brings an element of life and fun to a topic that is all too often tabooed. And when inevitably this mix tape gets played, I would like to think my spirit would like to listen to some tunes, and share a major part of my life with everyone who turns up.
So where does this lead us? What is the conclusion to this philosophical voyage?
A wise being once said “tis not the destination that is important, but the journey in between”.
So on Monday, after Grandpa’s Celebration of life Service, I’ll lift my glass and say a silent toast.
“To Life, Death and other Miracles”.
The weight of grief
Knowing that Matthew had thought deeply about his life and that he was somewhat reconciled to his situation was in some ways of great comfort to us. It also indicated his strength of character, that his situation did not make him depressed. He was unfailingly cheerful and had an amazing sense of humour that helped him cope with the cards life had dealt him.
For a long time after he died we could hardly put one foot in front of another. The most mundane tasks of life seemed impossible, we shed rivers of tears and wondered if our lives would ever return to some form of order. Our sleep patterns were all over the place, we would wake up all through the night, we could not get ourselves to bed, we only ate through the generosity of the good people in Boorowa who provided us with food for several months.
We struggled to articulate how we felt. Sometimes we craved human support, sometimes we wanted solitude. There was a physical dimension to our state, I developed chest pains but had a perfectly healthy heart…my heart was aching for Matthew.
Most distressing, was the slow lapse of time that took us further away from this most precious son who we loved so much.
Alice also was terribly sad, she had lost her brother whom she adored. She used to carry Matthew’s school bag up the drive, as well as her own, so that he would not get so tired. In every way she was a wonderful sister to him and she had lost her soul-mate.
My older daughter Skye was so helpful in organising Matthew’s funeral and in so many ways since. Our families have always been there for us and their empathy has made it possible for us to feel loved and to know that Matthew is always remembered.
Mary and I were fortunate to find a grief counsellor who helped us understand the way we were feeling and gradually to learn to live with a changed reality. It is hard to overestimate how helpful this was for us both. In some ways what you are seeking from counselling is to know whether the way you are thinking and behaving is within normal bounds. We also read about the reaction of our bodies to the shock of grief, and that helped us understand why we felt numb for quite a few weeks and then, after about six weeks, we felt absolutely dreadful as the chemicals that our bodies had made to protect themselves and put us into a numb state began to wear off and we had to learn to cope with life on our own.
It was a difficult decade. My mother died in 2001. We had a bushfire in January 2006 that burnt a third of the property and 23 kilometres of fencing. My father died that year and then our dear Matthew died in April 2007. Throughout it all were the worries of drought.
But, as I noted in my presentation to the Ecohealth symposium, we were also changing the way we looked at and managed our farm, and this became part of an important healing process – of the land and of ourselves: a “next step”.
David and Mary have established the Matthew Marsh Memorial Award at the Academy of Interactive Entertainment in Canberra, where Matthew studied. It is presented each year to a student who achieves “against the odds”.
Read more about David’s role in regenerative agriculture.