Elly Symons on Greece, Identity, the Parthenon Marbles, and the Life and Legacy of Samuel Symons

 

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Full transcript below ^_^

In this interview, Nick and Elly discuss:

  • Elly’s love of Greece and Cyprus

  • Questions of identity, home and belonging

  • The Parthenon Marbles, and Elly’s work to reunite them through the Parthenon Committee of Australia

  • Life and living history in Athens and Europe

  • Reflections on the incredible life and legacy of the late Samuel Symons

  • Living through a cancer diagnosis as an individual and as a family

  • Samuel’s contributions to the Peter MacCallum Cancer Foundation and the Victorian Comprehensive Cancer Centre

  • Love, memory and gratitude

  • How we remember loved ones, compared with the memorialisation of historical figures or events

Follow Elly on Twitter @ellymariasymons

Raphael, Samuel, Joel, and Elly Symons, 2018

Raphael, Samuel, Joel, and Elly Symons, 2018

Elly Symons on Greece, Identity, the Parthenon Marbles, and the Life and Legacy of Samuel Symons
Melbourne, July 2020

00:00 Nick:   Welcome to Bloom, a conversations podcast about anything and everything. Today's episode is proudly brought to you by The Flying Zucchinis, a company delivering fresh and affordable fruit, veg and other produce across Melbourne each week. Check out www.theflyingzucchinis.com to get your order in, and be sure to follow them on Instagram and Facebook for their exclusive and delicious recipes. 

00:27 I'm lucky to be joined today by Elly Symons, vice president of the Australian Parthenon Committee, a body advocating for the reunification of the Parthenon sculptures in Greece. Aside from her political and cultural advocacy work, Elly has a unique academic background across business, archaeology and psychology.

00:44 Elly has strong Greek heritage, with her family arriving in Australia from Cypress in 1951. In just a few days’ time, Elly will be returning to Greece so we're very lucky to be speaking with her on her last Wednesday in Melbourne for the foreseeable future.

00:59 Elly has become known to the Australian public as the loving, caring and articulate mother to the late Samuel Symons, as well as Raphael and Joel. Elly, it's a pleasure to be speaking with you this evening.

01:10 Now, for our listeners who aren't as familiar with you or your story, could you provide a brief overview of your life to date?

01:15 Elly:   Yes, I can. I was born in Melbourne. My parents are of Greek background. My father was born in Cypress and he came to Australia as a 19 year old in 1951, and my mother, her parents were from a beautiful Greek island called Ithaca and my mum was born here my grandparents having arrived in the 1920s. 

01:40 Nick:   How wonderful, and Ithaca is quite a famous and poetic island in Greek literature, isn't it? 

01:46 Elly:   It is. Well, it features in Homer the Odyssey which is the second great books after the Iliad, was about the adventures of Odysseus and his return to Ithaca and his travails along the way which took him 10 years to get to Ithaca, and it's also a very famous Greek poet called Kavafis wrote a beautiful poem about Ithaca which is about the journey, not the destination.

02:14 Nick:   How stunning, and I think I remember from my ancient Greek lessons years ago of a kind of Greek story about coming home or returning home called Nostos or a Nostros or something?

02:23 Elly:   Nostos, yes, which is the journey home, the return home. So, yeah, it's a beautiful concept and the Odyssey is actually a story of Nostos but because the wife, Penelope, is home waiting for Odysseus to return but he gets waylaid with all these adventures and travails, and he does arrive there eventually.

02:46 Nick:   Speaking of Greece, you've got a one way ticket to Athens in a couple of days and I was hoping you might be able to speak a bit about Greece as a country, what it means for you and your identity and what this home coming or 'nostos' in itself means for you?

03:01 Elly:   Well, I love Greece. So, I think that people that know me know that I love Greece. When you grow up as second generation diaspora, it's quite a complicated hat that you have to wear. You know that in your host culture - well, I mean, Australia is my home, I am Australian - but you know you're not Anglo, and so - and then when I go to Greece, I know that I'm not fully Greek. So, I often think that the second generation diaspora is kind of in no man's land a little bit. They sort of feel like they belong in both places but they belong in neither.

03:44 So, when I go to Greece - now I've had the chance to spend quite a lot more time there - I feel like I come alive in Greece. There's some part of me that was unlived in my Australian life that gets to be expressed when I'm in Greece.

04:07 Nick:   Like what? 

04:08 Elly:   Like talking with my hands a lot. Like what? Well, I feel like now that I have settled in Greece now and spent half my time there, I feel like I'm living my unlived Greek life, the one that I would have had, had my grandfather and father not got on a boat and sailed to Australia, that I would have been born in Greece and I would have had a Greek life. So, now I get to be in Greece not as a tourist, but as an Athenian. I live in Athens as an Athenian.

04:41 Nick:   How lovely. 

04:41 Elly:   It is lovely. I live at the base of the Acropolis so it's quite extraordinary when I go out my front door and like, there it is. There is the Parthenon and the Theatre of Dionysus which all the great plays - Aeschylus, Sophocles and Euripides - plays were performed for the first time in the Theatre of Dionysus which is 50 metres from my front door. 

05:08 Nick:   So much history as well and...

05:09 Elly:   It's extraordinary. When I walk through the streets of Plaka at the foot of the Acropolis, I know that all these extraordinary names actually walked in those very streets. So, I - you can't - you just - you feel it. I mean, you feel it and you're walking through the streets and you're seeing all these things, layers of history, the Library of Hadrian in a beautiful square with cafes, all these layers of history, you know you're in a city that's 3,000 years old. It's quite an extraordinary feeling. 

05:50 Nick:   Do you feel kind of more at home in terms of being closer to where your ancestors were as well?

05:54 Elly:   Look, I love Australia and, you know, obviously I'm Australian, but I do feel obviously - Greece is my spiritual home and yes, I do. I do feel incredibly home at Greece, and in Cyprus. My father is from Cyprus and I love - I love going to my mountain village of Agros in Cyprus, in the Troodos mountains. I love being there. Yeah, it's - its home

06:23 Nick:   What do you think you'll miss most about Melbourne as a city and Melbourne life?

06:27 Elly:   Well, Melbourne life right now in lockdown is not really - it's a ghost town. It's quite extraordinary, the times we're living in at the moment. Look, I love Melbourne. Melbourne's my home town. I'm a - I'm a Melbourne girl. I'm an urban girl. I - I've lived in inner Melbourne and now I live in inner Athens so I'm not a - I'm not a suburban girl anymore.

06:51 Nick:   Not a country girl...

06:52 Elly:   Yes, no, I know. I'm an urban girl.

06:56 Nick:   And for our listeners who aren't as familiar with the Parthenon sculptures and the historical issues there and also the Australian Parthenon Committee and the mission of that organisation, can you fill us in on I suppose the background of the issues at play and also what your role involves with the Parthenon Committee?

07:14 Elly:   Yes. Well, being Greek, growing up Greek, these are - we are well versed in our history and very proud of our very long history. When I was a little girl, I knew about the Parthenon and I knew that the Parthenon Marbles had been stolen by Lord Elgin and that half of them were in the British Museum in London.

07:37 And later on when I - the children were at home and Samuel had been unwell - I decided to do an archaeology degree just to keep my brain ticking over, and I obviously thoroughly enjoyed that and I knew that the Parthenon Marbles issue was still unresolved and - but I didn't really have a lot of time to devote to anything other than the - the boys at that period.

08:06 So, it was often in the back of my mind that I wanted to be an advocate for them and fast forward to the last few years where I've been able to actually become involved in that and I became the vice president of the Australian Parthenon Committee, and that has involved obviously several trips to Greece which is - hey, it's a tough job but someone's got to do it which obviously I love, and now I basically spend half of my time in Greece and I get to advocate for this issue which means I meet politicians and ambassadors and journalists from all around the world which has opened up an amazing world of people to meet and to talk to.

09:01 Nick:   Who's the most interesting politician you've met? 

09:03 Elly:   Oh, I've met lots of politicians. I've met the President of Greece, the culture ministers. I've met a lot of Australian politicians because I've lobbied in Canberra, federal parliament, so they're all interesting in their way. 

09:21 Nick:   And why is the issue important for Greek Melburnians or Australians?

09:25 Elly:   Yes, well look, I think the issue is important for everybody because it is the most extraordinary artwork really of mankind. I mean, it's the foundation piece of artwork of western civilisation. It is a building that is 2,500 years old and it is geometrically perfect. It is geometrically perfect and as - in terms of the architecture and then the - the sculptured frieze around the building is, you know, a second work of art. I mean, the frieze around the building narrates the story of Athens from mythology and its sequential and its like - if you're like Geoffrey Robertson, famous Geoffrey Robertson refers to it as a film reel of the history of Athens carved in stone.

10:21 It's quite extraordinary and to think that Lord Elgin erected scaffolding for two years in 1801 and literally hacksawed half of that frieze off and sailed to England with those things in boxes and then became bankrupt and sold them to the English government and now they reside in the British museum. It's just a travesty. 

10:44 Nick:   And so the proposal is to reunite them in Athens obviously?

10:49 Elly:   Correct. So, for many years the Brits have obfuscated and said, "No, no, they were acquired legally," and put up all these straw man arguments to retain them but the Greeks obviously want their marbles back or their sculptures back and they have an extraordinary Acropolis museum which has the other half that Elgin didn't take. They are in the Acropolis museum and they are awaiting the half that are in the British museum. So, you know, we have a fight on our hands and we are working very hard in Greece and in the UK to create awareness and find a solution. 

11:36 Nick:   Why is it important for them to be together? Is it like two lovers being apart and they're not...? 

11:40 Elly:   Yes, it is. Well, important to be together? Well, okay. Well, an example would be the Mona Lisa. I mean, if we just chopped half the face off the Mona Lisa and she was in - the top half was in Paris and the bottom half was in the Uffizi Gallery, I mean, would that be a good thing? I don't think so. 

11:59 Nick:   No. 

12:02 Elly:   We argue with the Parthenon that the whole building is the artwork. Its one complete piece of art as it is. The sculptures were not separate to the building. The sculptures were part of the building, and also the sculptures were not separate to each other. The whole frieze is one artwork.

12:25 Nick:   So, it works together and...

12:27 Elly:   Correct. So, we talk about the unified monument argument if you like, which is a phrase that I coined that has become common usage. The unified monument...

12:34 Nick:   Great. Copyright it.

12:35 Elly:   Yes, copyright it. The unified monument argument really is basically saying that yes, the whole building is the artwork. It was conceived as one - one complete artwork. There was no part of it that should be displayed separately to another part, and that's why it's wrong that half the marbles are in the British Museum.

12:58 Nick:   It's interesting to contrast how you're arguing in favour of preserving and restoring historical monuments and sculptures and statues when all around the world at the moment, people are tearing them down, across the US and the UK especially. So, could you reflect on that?

13:14 Elly:   Well, yes. I mean, look, in history we've seen many, many examples of this. In ancient history, the Christians burnt down the Library of Alexandria which my father always used to complain about. That was an extraordinary repository of ancient manuscripts in the world. They were copied and filed. Every - the objective of the Library of Alexandria was to actually be the repository of information across the ancient world and so to burn that down, it was - it was probably one of the greatest tragedies of - of cultural loss. 

13:54 Then we had the iconoclasts of the 600s that pulled down all the religious kinds of artwork in the byzantine world and then through the medieval periods, the inquisition. All these periods in history, tearing down - tearing down monuments and things.

14:16 Nick:   ISIS more recently in the Middle East…

14:17 Elly:   And ISIS more recently. Yes, you know, Palmyra the beautiful temple there and look, it's just - it's - and now in America. It's - yes, look, it's obviously political but, look, I don't think it's a useful thing to be tearing things down. I mean, if - what we need to do with our history is to admire the good things and learn from the mistakes. I mean…

14:41 Nick:   Yeah. Yeah, and to shift gears a little bit, at the start of the interview and indeed throughout, we've mentioned your late son, Samuel, about who you've spoken eloquently and sensitively in the media.

14:52 Samuel tragically passed away from brain cancer in October 2018. Could you speak to our listeners about Samuel's initial diagnosis at age four and how it changed your life and the life of your family?

15:05 Elly:   Yes. Well, look, it really did change our life. I was a young mum, a young bride, a young mum. Samuel was four, Raphael was two and we'd had a pretty lovely, beautiful home life up until that point, and he was a very - he was well, he was normal and so was Raphael and then one day, Samuel went to kinder and at kinder, he collapsed with a brain haemorrhage just out of nowhere and he didn't - it was not clear at the time what it was. He had a very bad headache. He couldn't open his eyes. They rang us. We collected him and I immediately sensed that it wasn't - it was really a sinister thing. There was something about it that didn't make sense and we ended up at the Children’s Hospital within an hour or two. We took him there and then the journey unfolded very badly after that point.

16:10 Nick:   Yeah, and do you want to speak a bit about it and those times?

16:13 Elly:   Yeah, I can speak about that. He - well, that particular night was pretty awful. It - he was in the emergency ward. They were trying to understand what it was. He wasn't - he was conscious but he was not really receptive. He couldn't really understand what was happening. We couldn't - he couldn't open his eyes. He was in a lot of pain, discomfort and then eventually about 10 hours later, they did a - decided to do a brain scan. So, and they came out - he came out of the brain scan at age four and they said he's actually having a brain haemorrhage and they rushed him to intensive care. So, it was pretty harrowing and it - being at the Children’s Hospital in intensive care with very, very, very sick children.

17:06 Nick:   You were a young mum.

17:07 Elly:   And I was a young mum. I was not 29, 30, and I had the two year old at home, Raphael, so it was all pretty terrible and then it took about a week for them - he was in intensive care on a Morphine drip because he was in a lot of pain. He lost a lot of weight. It took them another week or two to do another scan to - and then the brain tumour was revealed as the sinister cause of the brain haemorrhage.

17:39 Eventually, they found that the brain haemorrhage was caused by a brain tumour that basically ruptured and haemorrhaged. So, every fork in the road we reached kept going down the worst of the two options and they decided that obviously they were going to operate which was pretty diabolical because it wasn't in a good location at all. It was a very complex operation. He had seven or eight hours of surgery. He - and he was already weak by that stage because he had lost four kilos and when you only weight 18 kilos and you lose four, pretty sick.

18:25 So, again after the surgery - it presented very badly after the surgery. The surgeon had said that it looked - it was really a mess and it was a sinister, quite a sinister tumour and that we should take him home and enjoy him, were the words

18:48 They were going to - they were going to treat him but they said his odds of surviving were, you know, maybe 1% so it wasn't good but they were going to do the treatment. So, we - we - he had chemotherapy and then he had to have the radiation treatment, and the radiation treatment is quite diabolical on developing brains. So, children under the age of seven and the more you are under seven, the more damage it does. So, he was only four so that was - that presented a very unpalatable choice for us but...

19:28 Nick:   What kind of damage did they say?

19:31 Elly:   Basically, radiation fries brain cells, connections, neurons, synapsis. So, it does cognitive damage to developing brains, but one of the - one of the neurosurgeons at the time talked to me about a new concept at that time. It was the mid-nineties, called neuroplasticity which we now know is something that helps developing brains and that we can grow new neurons and because I - I took that on board and that became - after Samuel - after Samuel had the treatment and we were waiting for him to see if it was successful or not, we found that - that stayed in my mind as something that we needed to address. So, I became quite focused on his development - as a mum does with normal children, a mum particular does with a child that might have challenges.

20:43 So, in that first year after Samuel's treatment, after the radiation - he was very sick after the radiation. He was very weak. He'd lost a lot of weight. His scalp was burnt. He lost his hair. He was very frail. We focused on keeping him and Raphael happy, as happy as we could with their friends, keeping their regular activities and things.

21:08 We - I think we made a conscious decision at that point not to immerse - immerse him in the world of cancer. We - we made a conscious choice that we weren't going to be a cancer family. He wasn't going to be a kid with cancer, he was going to be a normal child. So, we - we really in that period, when we still didn't know he was going to survive but we did make conscious decisions about how we were going to manage his environment and make him feel like a happy five year old.

21:50 So, he went off to school the next year. He was still frail but by that stage, after a year had passed, the doctors - I mean, to have a cure, you - it's - they call it - they speak in terms of a five year cure. So, at one year being free of cancer, you're not technically cured but because the tumour was a very aggressive one, some of the doctors said, "Look, you know, if it was going to grow back, it would have grown back by now so, look, maybe we're going to be cautiously optimistic."

22:22 So, another six months went by. He was having regular scans. The second year went by. He was in grade one, he was in grade two. We started to sort of get our life back to normal, then Joel arrived, number three child, and that period was going along okay except at a regular scan when Samuel was eight, they found another tumour which turned out to be - they decided to remove it. It turned out to be a benign tumour called a meningioma.

22:55 So, one of the problems with radiation is that it treats cancer - it cures cancer - but down the track, it also causes - it can cause further cancers which they call the late effects of the treatment. So, the meningioma at eight was a direct result of the radiation he'd had at four to cure the first tumour.

23:16 So, then we got through that episode and he was in about grade two or three then. So, we chugged along and we - we immersed him and the other boys in various activities, all the while being conscious of his developing brain and putting him in environments where he was learning, so piano, chess, taekwondo, swimming, basketball, football, all those typical things but I guess it was my mind. I had a - a purpose and that was to grow neurons so that he could continue to develop, having that concept of neuroplasticity in the back of my mind.

23:55 So, he finished primary school but halfway through his grade six year, he developed thyroid cancer. So, at age 12 he had to have a thyroidectomy which was quite a dramatic operation at 12, to have you thyroid out, to have your neck opened up. It was pretty diabolical as well but he did that. It was in term three of grade six and he recovered pretty promptly and he finished grade six and then went onto secondary school at Melbourne Grammar which he really enjoyed.

24:33 And he - it was a challenge for him to - schooling in general was a challenge for him. His intelligence - he was intelligent but the learning environment, he used to get quite tired. So, but he loved his secondary schooling and he managed to navigate that period. Of those six years, he had another 10 operations on his neck because the thyroid cancer had spread to the lymph nodes around in his neck. So, he had 10 further operations during his teens which presented a challenge.

25:13 But despite all that, he was still able to do well at school and play sport. He swam, he played basketball, he played football and we had a pretty normal, happy life and then he finished year 12 and he - the thyroid cancer had presented itself yet again. So, between secondary school and university, he had to have another two very serious operations on his neck which were again very complex and he managed to get through those and he started at Melbourne University and he did an arts degree and went to college, and he was really happy there.

25:58 It was about that time that he discovered a love of volunteering and so the Peter MacCallum Hospital where he'd been treated at invited him to join their youth cancer advisory board because they were developing the Victorian Comprehensive Cancer Centre, and they were developing a special area and a special service for young people with cancer and they wanted to have input from young people that had, had cancer so that they could incorporate and address their particular needs because it's a very different experience for a young person - a teenager, a 20 year old - to have cancer. It's a very different experience to a 40 year old or a 60 year old or an 80 year old.

26:53 Nick:   Yep. Can you reflect on Samuel's work at Peter Mac and the Victorian Comprehensive Cancer Centre and the profound and lasting impact he had on the medical sector more broadly?

27:04 Elly:   Yes. Well, Samuel had a lot to do with the medical profession in his life, as I did. I mean, we were always at doctors’ appointments, at scans, having blood tests, having scans. He must have had about 100 MRI - just MRI brain scans in his life. Probably another 20 or 30 cat scans and another 20 or 30 ultrasounds. I mean, he - he was at least scanned 200 to 300 times in his life.

27:36 Nick:   Wow.

27:36 Elly:   So, each of those appointments involves an appointment at a hospital. You have to park the car, you have to wait your turn. You know, you have to kill three hours to do those kinds of things. So, his life was punctuated with a lot of those kinds of appointments and things but as I said before, we tried to normalise his life. So, we - the way we framed those events was that they were just punctuation marks. They weren't his actual life, and we discovered that while we were sitting there waiting for a scan, we could still be living. We were conversing together. So, we could have been together in the car driving to a basketball game but if we were sitting in the hospital waiting for a scan, it didn't make any difference. He and I were there or if a friend had come.

28:31 So, we decided to use those moments and not think of them as, "Here I am at the hospital again." So, we - we found that humour was a very important part of our family, given obviously dad's line of work and our household was a very funny household. I mean, we had - the three boys were each incredibly funny. We watched a lot of comedy and that became a very big part of how we managed. We could still find humour in the face of all these difficult things.

29:05 Nick:   It's often noted that Samuel made such a huge contribution at Peter Mac because of his unique advocacy as someone with lived experience of cancer over a number of years and there are fundamental changes to the Comprehensive Cancer Centre which are enacted today, such as changes in youth palliative care for instance.

29:24 Elly:   Well, he was on the youth cancer advisory board for about 5 years and so that was happening while they were developing the new cancer centre, and his input was very valued in that environment. They were very grateful to have his input because he had, had cancer for his whole life. It wasn't just one episode for one year, you know, as a teenager. It was pretty much his whole life. So, his contribution there was quite valuable and he made a real difference in that youth cancer centre that they developed in Peter Mac.

30:05 Nick:   Yeah. Almost as soon as Samuel received his diagnosis at age four, there were medical professionals saying that he wouldn't have long to live and that you should enjoy your last moments with him. Samuel went on to live a full life of service and achievement, surrounded by friends and family who loved him and with a profound legacy in the medical and charitable sectors as we have mentioned. What do you think is the most important lesson you've learned from Samuel's life?

30:34 Elly:   Well, his life was always full of challenge but - and adversity, but he was unfailingly cheerful. He was unfailingly positive. He was wise, perceptive. He got up each day and decided - made a conscious decision to have a good day and this was - I mean, the last tumour that he was diagnosed with was age 26. So, up until that point we thought that he was - and he thought that he had his life ahead of him.

31:24 That tumour came - that new tumour at 26, that came out of left field. It was a curve ball because he - he had then - after he finished his bachelor degree, he went onto finish his master’s degree. He was employed. He was - he was making progress in his working life. He had completed the - his roles at the cancer centre, the cancer centre got built. He was very happy. He was thriving and then all of a sudden at 26, he had a new diagnosis, a brand new tumour which they operated on again and then they said, "Yes, well this one - this one I'm afraid is terminal, glioblastoma multiforme.

32:08 One of the - one of the sad truths is that cancer treatment for brain tumours has made very little progress in 50 years and that is really - it's just not - it's not good enough because most of other cancers, in fact all other cancers, have made treatment progress.

32:28 So, to be told that - I think he - obviously when things started to unravel for him, it was pretty diabolical and he started to decline and it was very difficult for us to watch, and it felt - his contribution and his attitude to life had been so positive and it was very difficult to then watch it all unravel where he had tried so hard for so long to be normal and to live a really good life of - and to give to people, to be positive, to be cheerful and to think of what could be achieved each day, rather than, "I can't do this because..." So, and that was something I was very conscious of modelling to him, that rather to frame things with, "I can't," that we would frame things by, "I can." You know, "What can you do today? I can do this. I can do that." So, that was a very positive example and that was something I really strove hard to model to him and of course to the other two boys.

33:52 Nick:   Yeah. What has Samuel's life and legacy taught you about gratitude?

33:57 Elly:   About gratitude? Well, obviously we're very grateful. I mean, we could have lost him at four. So, first thing we were extremely grateful to have him another 23 years after that particular diagnosis.

34:12 I felt - when he did pass away at 27, I felt - at first well I was obviously pretty numb but I felt that - I did question why he had to have such a difficult life for 23 more years and then his life was taken away, and that was something I - I probably still grapple with that but I've started - you can't - it's very difficult to live with that. So, you have to reframe that as well.

34:48 So, our - our own mind and the way we think is a very powerful mechanism for managing the things that happen to us and managing our feelings and managing our thoughts, and so I guess the legacy - what I think about is the way he lived his life was a very good example of how anyone should live their life, is to get up each day and think, "What can I do today that's constructive, that's thoughtful, that's kind?" I mean, he was - Samuel was a very giving person and I guess that was sort of something that I modelled as well. I was someone in the community and through the schools that I was participating and helping - you know, coaching teams and helping other kids and other families and participating and so that was something that he did as well, and that was a very powerful way to live his life because he did make a difference and he actively chose that. Even at a young age, he was aware. He had - he had the awareness to know that the way we live our life each day is in our own hands. It's in our own power. We have the power to have a good day if we choose that. So, he was an active participant in having a good life.

36:12 Nick:   Absolutely, and you and your family have been very open with the public about Samuel's and your family's experience of living with cancer because of course the illness affects more than just one person. Can you reflect on the experience and importance of being so open and generous about what is a deeply painful and private thing to live through and what you hope your communications and advocacy have done for the hundreds of thousands of other families in Australia going through similar experiences to yours?

36:40 Elly:   Well, yes. It was initially - because my husband was in the public eye, our family was in the media - were in the media - and we found that initially we - there was a bit of a code of ethics actually to tell you the truth, and the media knew that we were obviously going through a very difficult period and they were quite respectful of that and we decided that we had a public life but that part of our life didn't have to be public.

37:12 So, because - as I said before, we were living a normal life. We were providing Samuel with a normal life. So, fast forward to when he was 18. Australian Story approached us and said that they would like to tell Samuel's story and it was a powerful story to tell and so we felt that at 18, he had the toolbox I suppose to actually participate in the telling of that story.

37:37 So, we - we agreed to make that Australian Story and it was quite a - it was a really powerful thing to do and it was very useful for Samuel because on the cusp of his own adulthood, he was able to tell that story and then kind of leave it there and enter his adult life with that story sort of done and dusted and told.

38:03 So, he was able to then spend the next 8 years of his young adult life just getting on with it. So, then obviously the final tumour arrived at 26 and that, you know, ended his life and that was an absolute tragedy and gut wrenching and look, it still is but in terms of the public - I suppose we have spoken - I have spoken publicly and I'm speaking now and I'm getting to a point where, you know, there's a lot of things I do want to say about it and I will write in the future and reflect and articulate more about what I want to say about that journey.

38:46 Nick:   Yeah

38:47 Elly:   And I do believe that most people are - a lot of people say to me, "Oh, you're so strong. How have you managed that for so long?" but I do actually believe that most people have the power within themselves to manage very challenging circumstances and I think we make a choice. We make the conscious choice and you have to actively choose to make the best out of whatever opportunity you have.

39:16 Nick:   That's really beautiful. Thank you, and finally on this subject, what is your most cherished memory of Samuel and how do you choose to remember him and his life?

39:25 Elly:   Samuel - Samuel was an incredibly sweet human being, a very generous, kind, loving person. He - if you were - if Samuel was in the room, the room was happy. He had a very beautiful presence in a room, quite - I - I've been playing around with a few different adjectives and words but one that really springs to mind with him is the word grace. He - he exuded grace, a grace of calmness and clarity. He knew - he knew who he was. He knew his life was often in danger. He lived with that his whole life and even at a very young age, he just understood that.

40:14 So, he understood from a very young age - without it being taught to him, he understood what was important in life and what was the most important thing to him and what we all known to be true is that it's relationships with people. It’s how we relate to people and how people relate to us and how we conduct ourselves and how we think and feel. These are the things that are the most meaningful. So, and that was something that he understood. So, that's what I'm reminded of with him.

40:46 Nick:   Beautiful. To link back to the start of the interview and the Parthenon sculptures, I was hoping you could reflect on the different ways in which we memorialise loved ones and the memory of people like Samuel, and how we choose to remember or memorialise historical figures and moments through statues. So, what are the ways in which you remember Samuel and his life?

41:06 Elly:   Well, look we are getting on for 18 months since we lost Samuel. The first year, I have to say I was quite numb. I - I was in a state of shock really and I - I - it was very difficult. The last six months, I've been able to process it a bit more and I've been incredibly sad and I have to find a way to live with that sadness and honour the fact that he's missing and I have to manage that but I have to live the rest of my life with that, and I could - again going back on what I touched on, I could wake up every morning and I could choose to be sad every single day of my life and I don't think that's a particularly productive way for me to live the rest of my life.

42:09 So, I have to - I have to come to a - my own understanding of how I can live in a way that honours Samuel's memory respectfully and that I have a place for the sadness but that I allow myself to still try and engage in life and be happy and try and find things that bring joy and that are productive because again it's - you have a choice. I think you have a choice.

42:47 Nick:   Yep.

42:48 Elly:   And I taught Samuel not to be a victim, not to think of himself as - he wasn't defined by being a sick kid and I don't wish to be defined by being, you know, a bereaved mother for the rest of my life. I - I am a bereaved mother. That's what I am, I get that, but I have the right to seek happiness and I must allow myself to do that and still honour Samuel's memory.

43:16 Obviously - one of the ways to do that is to - I - I kind of - every day I often find myself talking to him in my mind. I have conversations with him or sometimes I come across something and I think, "Oh god, he would love that," you know and in my mind I share it with him and I often think of some of his, you know, lovely qualities and I try to remember those and enact them in my daily life. So, that's how I memorialise him.

43:48 Nick:   Beautiful.

43:48 Elly:   And it's very personal and, you know, grief is a very difficult thing and a lot of people don't often know whether to mention him or not but I - I like mentioning him. I - I'm happy to say - if I come across something, I'm happy to say, "Oh, look, Samuel, you know, used to like that," just as if I would say Raphael or Joel really enjoys, you know, British comedy or whatever. It's just - it's really nice to be able to be given permission by people but - but I think people find that they're not sure. So, I realise that I have to give them the cue that, yes, you can mention Samuel's name and I'm not going to fall apart. You know, it's lovely that we can keep him alive by mentioning him from time to time.

44:40 Nick:   Beautiful. That's a beautiful note to end today's conversation on, Elly, and thank you so much for your generous, honest and kind reflections. It's - we've covered quite a lot and it's been an absolute pleasure to speak with you, so thank you very much.

44:53 Elly:   Thank you very much for having me.

44:55 Nick:   Thank you and safe flight to Athens.

44:57 Elly:   Thank you very much.