Many believe that Mark Baker’s legacy is his wonderful work in the Jewish community and his beautiful writing. And they’d be correct. But to me, his legacy is family.
Mark’s story mimics my mother’s: diagnosed with pancreatic cancer, with so much to live for yet facing death. Mark had already dealt with so much heartache in the years prior – his wife Kerryn died from a rare cancer, his brother Johnny also from cancer and his father Yossl from a fall.
Despite all the sorrow though, Mark, in true Mark Baker form, found a way to live again.
And arguably the biggest part of that life was Michelle Lesh and their miracle daughter, Melila.
For weeks, Mark was suffering with unbearable pain and discomfort. Yet even with a barrage of tests, he was continuously misdiagnosed, despite trying to push for more answers. It was 122 days between his first CT scan and his official diagnosis. He died 13 months later.
When I sat down with Michelle to talk about Mark’s final memoir, A Season of Death, I asked whether the persistent patient advocacy by Mark was influenced by his experience with Kerryn and Johnny.
“This is Mark’s story,” Michelle said. “This is what happened to him. The location of the tumour meant it was hitting a nerve, so he was in excruciating pain. There was that aspect, that the pain was so intense, but there was also the past experience, seeing otherwise seemingly healthy, young people dying of terminal cancer within 10 months. They were the two things that were forefront of his mind.”
A Season of Death picks up where 30 Days ended. It takes readers through Kerryn’s illness, her death, followed by Johnny’s diagnosis and death, and details Yossl’s passing. Weaved through these events is how Mark coped, how he fell in love with Michelle and how they struggled but eventually conceived their daughter. It is written in true Mark Baker style with warmth, wit, strength and exceptional love.
In death, as he was in life, Mark was extraordinarily vulnerable.
When he was diagnosed with pancreatic cancer, he began to write from his hospital bed. Eight weeks later he handed Michelle the first draft of his manuscript.
Michelle describes herself as a notoriously private person. Yet, in A Season of Death, her experiences are laid bare.
“I am instinctively a private person, which might sound strange given how much detail there is in the memoir,” she confirmed. “But Mark’s way of writing, and his approach to writing, is to give detail as a way to hopefully come alive and engage emotionally with the reader. It’s all out there, exposed to the world.”
I can confirm that every word Mark writes is felt intensely. His pain, his raw emotion, it all comes through his words. But so much more than that, his love sings.
“It’s so light and it’s so joyous, but then it also drips with pain. Because it’s him knowing that there’s this new life that he’s just created, and it’s about to be snatched from him. And it’s not just a new life that he created. It’s Melila and I after what he went through. It’s him transforming his old life and integrating it with his new life. It’s his adult kids, his grandchildren, his blended family.”
Michelle explained that while the book has been published following his death, Mark was involved in pretty much the entire thing, even down to deciding on the title, the names of the chapters and approving the cover, which is designed by Anita Lester.
She also admitted that while it was challenging to read it at first, it is what the family needs.
His pain, his raw emotion, it all comes through his words. But so much more than that, his love sings.
“The first time he gave me a draft, it was pretty confronting seeing my life on the page, but I had made that decision early on that it’s not for me to say, ‘write about this, but not this’. It had to be his story and that included me and Melila,” she explained. “In the first instance, he was writing it for our daughter so that one day when she grew up, she could get to know her father and his love for her through this book. That was just such a gift that he was giving me and her, and giving his adult children.”
And it truly is all there, out in the open. Michelle acknowledged though that it’s up to readers to decide what they take away from Mark’s experience and words.
After Mark’s passing, Michelle and her stepfather Raimond Gaita committed to publishing the manuscript. But, as Michelle pointed out, Mark was adamant that it must only be published if it met the same literary standards as his previous two books – The Fiftieth Gate and 30 Days.
“The book had a beginning, middle and end. Mark had done it all,” Michelle explained. “The reason [the editing process] took a year is not because there was that much to do, it was working out whether to add a sentence or two to make it clearer, [it was fixing] repetition at times. But it was always what would Mark want to say and how can we amplify Mark’s voice.”
Michelle explained that Mark decided how the book would end. It wasn’t a rush to the finish line, but rather a calculated literary and emotional decision to finish the book in the way it finishes. She credits Raimond for ensuring the book stayed true to Mark.
“Mark had said to Raimond before he died, ‘You can’t write a memoir looking over your shoulder. I need to write what I want to say.’ And Rai was reminded of that over and over. Would Mark be happy with this? Would he be happy with this word, with this sentence?”
Michelle explained that she was conscious of protecting everyone, but Raimond concentrated on ensuring Mark’s voice remained front and centre.
Michelle also spoke about Mark’s incredible strength and foresight to get all of this into a book.
“He had an incredible discipline, writing under the circumstances that he did, in excruciating pain. But he had such foresight with writing this book for Melila and for his adult children,” she said.
Mark’s three older children were adults when he died. All were married. Two had children of their own. They had been down this road before with their mother Kerryn, who died in 2016 from stomach cancer. They knew what they were facing. So, Mark never sugar-coated anything when explaining his diagnosis and illness, and in turn, he doesn’t sugar-coat anything in the book.
Mark’s three adult children were given the manuscript the night he died.
“They started reading it straight away,” Michelle said, explaining that Raimond believed they would need it, that they would be proud of their father and the gift he had given the whole family.
“Reading it during the shiva period was very surreal. You can hear Mark’s voice so loud in this memoir, so there’s that comfort. There’s this surreal experience of savouring every minute of his voice.”
Michelle explained that for her, even the editing process was addictive in a way because she wanted to keep him close, and his words allowed her to do so.
She also said that the family has been incredibly supportive, giving credit to Kerryn and Mark and how they raised their children.
“It’s all about ‘this is the family now’. We have to make the most of it and be there for each other. Like Mark said, there are no ‘steps’; they are all siblings. I think that closeness made things easier for them. And they saw Mark’s need to write, and they have celebrated that.”
When speaking about Mark’s authenticity, Michelle also acknowledged that central to living an authentic life was not being in denial.
“Reading it during the shiva period was very surreal. You can hear Mark’s voice so loud in this memoir, so there’s that comfort. There’s this surreal experience of savouring every minute of his voice.”
“He was very clear and very sober about the fact that he was going to die. He spoke to us about that, and wanted to, prepare is not the right word because we can’t really prepare, but he tried to make it as easy as possible for us and his kids by being open, and talking emotionally and also factually on the medical side.
“Each death is different. He discusses it in the book. His approach is different to Kerryn’s and different to Johnny’s. But their deaths very much formed part of it. That’s why it’s a ‘season’ for him. Johnny and Kerryn’s deaths were very much part of his process of facing death.”
Michelle explained that Mark chose the stone for his grave from Jerusalem, he wrote letters to the family. But in his very ‘Mark’ way.
“Everything he wrote is self-deprecating and witty. But with wisdom of how to confront grief and how to embrace life. And his wish was for us all to be doubly happy. It’s very much that Jewish tradition of needing to grab life – you’re actually obliged to live life to its fullest. And he did that. Re-emerging out of his grief, fighting to live in his authentic way.”
Michelle and the family have been extremely moved by the response to the book. The overarching theme of love, loss, grief and family will resonate with everyone.
“Seeing how emotional people are who knew Mark, hearing that they can hear his voice so loudly and the comfort that brings to them in that period when they’re reading,” she said. “But equally, by strangers who didn’t know him except through his writing. His story and his thoughts and reflections about death resonate with people beyond those who knew him. Hopefully they’ll bring comfort or reflection about something that we are all touched by in different ways – grief, death and love. If there is that universal message that he is able to give, I think it’s an added gift.”
It’s quite a poignant time for Michelle and me to be talking – during November which is Pancreatic Cancer Awareness Month – discussing a book that not only delves so deeply into the experience that pancreatic cancer patients and their families often face, but delves into a story that is so similar to my mother’s.
Having known Mark from my childhood, their philosophies on life also mirror each other’s, which makes it all the more surreal, yet in a way, exceptionally comforting.
They were both so full of life, encouraging others around them to love and be loved, to live authentically.
I finished the book the morning I sat down with Michelle.
We spoke about the progress in pancreatic cancer awareness and treatment between our two loved ones being diagnosed, my mother Rochelle in 2013 and Mark in 2023. I was happy to tell her that awareness has improved in those nine years. Not enough, but it’s getting better.
It’s even more poignant for this article to be published today – World Pancreatic Cancer Day. A day dedicated to raising awareness of the disease and the pancreas as an organ.
The advantage that Mark had was that while our family didn’t know much about the pancreas, he did, and he fought for a diagnosis. It just came too late.
A Season of Death is published by Melbourne University Press, $29.99 rrp
For more information about pancreatic cancer and WPCD, visit hellopancreas.com
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