Maricla Pannocchia: ‘Don’t turn a blind eye, it won’t help anyone’, Teens and Cancer - 2020

January 2020, Rosignano Solvay, Italy

Hello everyone, my name is Maricla Pannocchia, I’m the founder of a charity called “Adolescenti e cancro” (Teens and Cancer) which brings young people with cancer together. We support anyone aged 13 to 24 y.o. from anywhere in Italy who is going, or has gone, through a childhood cancer diagnosis.

We organize free activity stays, days out and other initiatives so these young people and their families can meet others in similar situations and we aim to make the cancer journey a little less lonely. I also work a lot on bringing much needed childhood cancer awareness. I set up my charity in 2014 and that’s when my life changed. Before that, I didn’t know anything about childhood cancer. I was – and still am – lucky enough to have never experienced cancer myself, nor to have known a close person who has gone through a cancer battle, so I didn’t have any reason to think about cancer in general or, specifically, about childhood and teenage cancer. I happened to read a story or two in the newspapers, once in a while, but those were mostly stories where pain, suffering and death were the predominant themes. On the contrary, I sometimes saw pictures of bald, beautiful and happy children or teens having fun in a summer camp.

Those are just two extreme sides of the cause. Childhood cancer has many shades, and most of them are not seen by the general public. When is the last time you heard about how childhood cancer is severly underfunded? I didn’t know that. I worked in my charity for a good year and a half before I’ve found those information in some foreigner Facebook groups set up by childhood cancer families. Until then, I thought any child or young person diagnosed with cancer in Europe or in the States would be treated with the best treatments. I didn’t know that, because childhood cancer is considered “rare”, in the US only 4% of federal government cancer research funding goes to study pediatric cancer. In Europe, 6.000 children and young people die of cancer every year yet in the last 9 years only two new cancer drugs for the pediatric patients have been developed. In 2016 there were over 1.000 new drugs being devoloped for adults with cancer.

When I learned about this I was shocked, and outraged. We’re focusing on so many unimportant things. We keep saying: “Children and young people are our future” and then we fail them. Why? Do governments really think money are worth more than a young person’s life? Most of these children and young people go through old, harsh treatment plans that often leave them with long term side effects such as infertility and secondary cancers. Then, when we say “childhood cancer” people often think that’s just one illness when in fact we’re talking about many different types of cancer and dozens of subtypes. Prognosis can vary from one cancer type to the other. There are certain types of cancer for which the prognosis is still pretty poor and some types of cancers like DIPG (diffuse intrinsic pontine glioma; a type of brain cancer) that still has no cure. It’s terminal upon diagnosis and the average survival rate is 9 months from diagnosis. This didn’t change in the last 50 years.

And the question is still the same, old one: Why? Because we’ve got the wrong priorities. Because we don’t like to think about childhood cancer, it may scare us, but we need to shed light on this topic and to make our voices heard with these families and young people as well as on their behalf. We must be united to make our voices stronger and to inform governments and all the other people who play an important part that we can’t keep ignoring this. This is such a complicated world which is impossible to completely describe now. That’s why I share a lot of real life stories that young people and their families send to me, because they want you all to know what they are or have been going through and how one of the most basic human rights – the right to health – is often ignored in our rich and developed Countries where many children and young people die or go through months or even years of hell because we all, as a developed society, are failing them.

Childhood cancer is not just bald, smiling kids. It’s not just pain and heartbreak. I’ve got the honor of knowing many young people with cancer, many brave parents, and they taught me the most important life lessons that shaped me as a person. They really are our present and our future. They should have the right to go to school, play a sport, have fun, travel, being contributors to the world. They are not just poor little kids lying in a hospital bed that we can easily forget about, or that we can feel sorry for, they are individuals each with his/her own personality, dreams and worries. They deserve a future, and a present in which they are well cared for and where they can feel they are worth to us.

I encourage everyone here today to learn more about this cause. I’m using my charity’s Facebook page to share real life stories as well as articles from reliable sources to help people get a better understanding of the childhood cancer world. Educate yourself, that’s the first step, I think. Don’t turn a blind eye. It won’t help anyone. And once you’ve started learning about all this, and maybe you’ve met a childhood cancer family or two, you’ll be able to advocate and to join all our voices. Together, we really can make a difference.

To follow my charity’s Facebook page: www.facebook.com/adolescentiecancro

Simone Clements: 'Mummy, am I going to heaven?' Hayden's story, Redkite charity night - 2017

7 September 2017, Sofitel, Melbourne, Australia

Redkite is a charity that raises money for families who have a child who has received a cancer diagnosis. The corporate quiz is their big fundraiser. Simone is the mother of Hayden. Video of speech embedded above.

Good evening Everyone,

My name is Simone Clements and I have been invited to talk to you tonight because our family has been a recipient of RedKite’s compassion, kindness and financial assistance. 

You may recognise us from TV,  New Idea magazine or advertising material but more recently from the National news and Newspapers as we are the family that had both of our cars stolen out of our driveway on a day we needed to get to the Royal Children’s Hospital for an MRI for our son.

You see we have a little boy Hayden he is 6 years old and he was diagnosed with and inoperable, incurable brain tumour nearly two years ago and this is our story......

A few weeks after the twins 5th birthday Hayden began to complain that he couldn’t use his left hand and arm whilst dressing, immediately we sensed that something neurological was going on but we still had hope that maybe it was an injury.

We didn’t want to panic so we took him the Dr but when they suggested we take him to the Royal Children’s Hospital immediately, we knew it was serious and were overwhelmed with emotion.

As we raced him into the Royal Children’s hospital we began discussing the worst case scenario and preparing ourselves for what was to come. Upon arriving at the hospital he was rushed into a CT scan revealing a 4cm tumour in his brain stem. I remember feeling devastated, sick and barely able to breathe. I tried to be brave and I held it together in front of Hayden but eventually I was overcome with grief and shock and I had to leave the room. My knees went weak and I remember sobbing on the emergency department floor.

Nothing could take away my pain, it hurt so much.  I was grieving for the life that I had envisaged for our son and fearing the unknown.   Eventually, I pulled myself together and realised that all these feelings had to drive me to do whatever it was going to take to get our son through this journey. That became our family mantra, “Whatever it takes...”

I stand here tonight so very proud of our family and the resilience we have shown bravely fighting this beast we call cancer. We took our inspiration from Hayden he is a hero, a little champion. He endured 36 rounds of chemo in 12 months, lost all mobility on his left side, put up with painful procedures, surgeries, MRI’s, x-rays, ultrasounds, examinations, countless blood tests, in and out of hospital for two years, powered through his rehab sessions even when he felt like giving up or it was too hard, he just smiled and got on with it impressing everyone with his attitude and charm.  

If you would like to watch his brave fight you can watch it on youtube called Hayden’s Journey. It’s a 30 minute glimpse into the 2 year struggle for a child diagnosed with a brain tumour.

I don’t know how he did what he did and I don’t know how we have survived the past 2 years but one thing I do know, we couldn’t have done it without our community, the kindness of strangers and the support that RedKite provided our family.

Cancer affects every aspect of your family’s life physically, emotionally, financially and psychologically. RedKite provided our family with much needed resources to manage our grief, counselling for our well being and made sure we didn’t have the extra stress of finding funds to pay bills, petrol, groceries and ongoing medical costs.

Funds raised for RedKite on nights like tonight for families like ours have contributed towards our bills, school fees, medications, rehabilitation equipment,  mobility aids, safety items in our house, Physio, OT , Dr and Therapy costs, psychologists, house cleaning and babysitters for our other children just to name a few. 

The contributions of individuals and companies are greatly appreciated by families like ours. I just can not begin to express our gratitude for all that RedKite have done for our family during such a difficult time.

One night last week Hayden’s twin sister was snuggling a bunny that was given to her she calls it her worry bunny and she told me it wasn’t working. I said to her sometimes you need to tell grown ups your worries and that helps too. She took a breath and said softly, “I need to tell you I have a worry and it’s about Hayden. I braced myself and then she said it, ‘I’m worried that Hayden going to die from his brain tumour.” My heart sank and I responded with, ‘I know sweetheart this is my worry too, but the doctors are doing everything they can to help him and you know what, every day that we have him in our lives we need to tell him we love him and make the most of our time together.’ Young children shouldn’t have such worries weighing heavily on their minds.

Twins Carlee and Hayden

Carlee and Hayden

Another day that nearly broke me was when I was walking with Hayden in the wheelchair to get some fresh air he was so sick this day after chemo and he looked up at me and asked, ‘Mummy am I going to heaven?’ I didn’t know what to say so I just said, “Not today sweetheart hopefully not anytime soon.’

So as you can see dealing with childhood cancer these past two years has been pretty traumatic but knowing we had the support of people like you, companies, businesses and RedKite definitely relieved the pressure and we didn’t feel so alone. The financial aid that you generate goes a long way in helping families like ours and critically ill children.

We will never forget your kindness, generosity, well wishes and support.

From the bottom of our hearts and on behalf of families dealing with Childhood Cancer. 

Thankyou.

You can help Redkite provide essential support for families like Simone's by donating here. You can support Hayden's GoFundMe page here.

Shelli Whitehurst: 'I live in a place of constant unknowing, and that's what cancer feels like', Tour de Cure Snow Ball - 2015 ',

June 2015, Sydney, Australia

For over 12 months, I've been fighting stage 4 bilateral breast cancer with widespread metastases to the bones. I'm fiercely strong and I'm independent, and I find it hard to ask for help. I smile and I say fine a lot, and I love to win. These are now my greatest weaknesses.

I had the most perfectly crafted speech a week ago that I was going to tell you like a TED speech, you know, the ones that make you laugh and cry, and you're gonna all give me a big standing ovation and it was going to be fantastic ...

That speech is bullshit.

Because on Monday everything changed. My cancer came back, and it's time for me to stop looking like I'm okay with having cancer. I'm not okay with having cancer. It's time for me to talk about what it feels like to have cancer, and tonight I'm calling it my cancer 'coming out'. I was in hospital on Monday, if any of you were following my Facebook you would have known this, recovering, and I was about to leave the hospital as the revolving door of doctors started and I knew something was wrong.

By the way, I love all of my doctors. They are incredible.

I was told that my cancer was no longer stable and that we would have to start new treatments and new drugs in two weeks. On Tuesday I cried. By Wednesday, I was bored with being sad and angry, so I gave myself a deadline by 8:00 a.m. Thursday that I would start pulling myself together and getting on with life.

It's so hard, because I've just spent 12 months fighting to get here, and now I'm back to square one. If the drugs work, we might have years. If they don't work, I might have 12 months. This is what cancer feels like: You constantly have no answers. You always have questions. You are constantly worried that this day is going to come, and it did, and again, and it will come again, and you just constantly want more time.

Thursday night I got on the plane with my brother to come to Sydney. I was so broken. I fell asleep the whole way, and he ate my cheese and biscuits while I was asleep.

Today I haven't even been out of bed. I used all my energy so that I could attend, and as I said to many people tonight, they were like, "Why did you come, you could have not?" Oh, my God, I would have had the worst migraine ever because I love the Tour de Cure family, and it would have killed me worse than the cancer to be at home and not be at this event tonight.

Nothing is ever going to be okay for me. I have stage 4 metastatic cancer. But I'm not feeling sorry for myself. As you all know, that's boring.

I'm not shaming anyone for not knowing any better, but it's now my job to educate. The most asked question I am asked is, "What can I do for you? I want to do more' I usually say, before today, "I don't need anything. I'm fine," 'cause I don't like asking for help. But this answer has changed. This answer is now, please don't forget me. I need hugs. I need my hand held. I need to be allowed to feel vulnerable, and I need to be allowed to cry. I need to be able to tell you this, and I need you to visit me. I need you to Facetime me, and I need you to Facebook me. I need you to pop me a note in the post, and I need you to keep calling me even if I say no. I need you to stalk me, because it's hard keeping myself up when alone, you know, other people not being there as well.

The second biggest thing that cancer does and feels is it consumes you. When it consumes can feel devastating.  What consumes you runs you. When you know me, you'll know I love business, I love ideas, I love making things, I love entrepreneurship. I am very lucky to have very good friends. Dylan, Matt and Chris. They knew that one way to avoid cancer consuming me was to give me a project that consumed me, so we created the project called Kit for Cancer. Some of you may know it. Now, you all know about it. When you're diagnosed with cancer, the worst possible moment happens, and nobody knows what to give you and nobody knows what to say to you. We designed a kit full of beautifully curated items for patients by patients. It is the gift you never want to get, and it is the gift you never want to give, but it is here when you need it. It is something that family and friends can buy for their loved ones when they are told, "You have cancer."

I thank you, guys, for pushing me through and working on this project with me so I could forget, most of the days, that I have cancer. This week, I hate cancer. I hate it. I hate fighting, and I want a day off. I'm tired of being positive and happy and energetic, and I'm sick of being okay and trying to make everyone else feel okay. I'm exhausted. This is what cancer feels like. This is what cancer feels like, and cancer patients will never tell you that it feels like. This is what it feels like every day.

There is no cure for my cancer. There is not much money allocated, either, to researching the kind of cancer that I have. This cancer will kill me. This means that I may not see my niece turn four. I may never go on another Tour to Cure, which would break my heart, 'cause that was awesome. I may never see the legacy of Kit for Cancer succeed. I may never go on another date with a boy again. I may never travel to see my best friends in the USA. I was meant to leave next week, and that's all gone on hold.

But then again, I might. I don't know, because I live in a place of constant unknowing, and that's what cancer feels like. I'm fighting this cancer now on the inside, but there is not a moment that Chantel and the team aren't fighting harder. She surrounded me with the best people in the industry, and they fight hard to make sure that I can stand here today. While we may not be thankful for the cancer, we need to be grateful for the doctors, the researchers, the nurses and the treatments that give me the chance to fight this. If there ever comes a time where the treatments stop working, please know I will always be grateful for having lived a great life with no regrets and now having you all in it.

As we go into the auction right now, and you're all having bubbles, which I wish I could drink but I can't because it tastes awful, and if anyone knows me, champagne is my thing. If I'm given 12 months, I will be going to champagne. I will drink it even if it tastes awful, and drink every single ounce of it. The other thing I will do, of course, is I promised my niece I would take her to Disneyland, and that will happen. We will [inaudible 00:07:26] every single day. As you're thinking about spending money tonight on some of these epically cool items, cross your fingers and know that maybe just one of those dollars or some of those dollars that you're raising for Tour de Cure just might go into a breakthrough drug that might make me stay alive.

Kindness is free. You can sprinkle that shit everywhere, okay? And broken crayons still colour.   

Anthony Griffith: 'It was the best of times. It was the worst of times', Moth Presents, US Comedy Arts Festival - 2003

28 February 2003, Moth Presents, Aspen, Colorado, USA

Charles Dickens' classic tale, 'Tale of Two Cities' starts off with the phrase 'It was the best the times. It was the worst times'. 

In 1990 I moved from Chicago with my family to LA to seek my fame and fortune and and (within) a couple weeks of being there I got two important phone calls: one was from the talent coordinator for The Tonight Show offering me to have a spot as a comedian of on The Tonight Show and the second call was that my daughter's doctor had called up to say that her cancer had resurfaced.

A year prior she was diagnosed with cancer and we fought it and it went into remission and now it was back. And for that next year my life was pretty surreal -- its was like two different personalities,  during the day, in order to keep my daughter at home with me I would have to learn CPR and how to work a heart monitor and administer medicine, and all these technical terms -- take her back and forth to get her platelets and blood and check up on her.

And at night I would go from club to club with the talent coordinator and I would work on my set, and try to perfect it and I would meet veterans like George Wallace and Seinfeld and Roseanne, and I thought that everything was great because we had beat the cancer
before, and we would beat it again, and this was the first time that I was going to be in front of millions of people on The Tonight Show.

And the first time on The Tonight Show I was extremely nervous.  All I could think about while I was backstage being introduced was 'don't mess up, just don't mess up - whatever you do don't mess up'. And then the curtains opened up and there were 600 people, and the camera and Johnny's over there and the band is over there, and I don't know what I said for the next six minutes but I get six applause breaks.

And the great part of that night was that I was going to my car and I met Johnny who was going to his car, and it was just a private moment between us in a parking lot, of him saying, "you were very funny, were extremely funny --  start working on your second Tonight Show,  because I want you back.

By the time I get the official call for my second Tonight Show, my daughter was admitted to the hospital. If you don't know about cancer when it comes back, it comes back hard. It's like beating up a gang banger for the first time, and then he's coming back, and he's coming back meaner and stronger and he's coming with his friends.

So in order to compensate for that you have to raise the chemo and you have to raise the medicine, and you have to raise the radiation which is difficult for an adult but she was only two.

So she was bald, which she doesn't mind cuz every kid in the ward is bald, and she thinks this is just part of life, and she can't keep her food down and ... you're not prepared for this ... there's no books, there's no home ed class to teach you how to deal with this. And you can't go to a therapist because in the black world a therapist is taboo -- reserved for rich white people.

So you're tryin to figure it out -- what did I do? Maybe it's something I did. Maybe it's something my wife did. Maybe my doctor diagnosed it erroneously. Something.

But at night I still have to be a comic, I have to work The Tonight Show, because that's what I do, I'm a clown. I'm a clown whose medical bills are raising, whose one step from being evicted, whose one step from getting his car repo'ed -- and I have to come out and make you laugh because no-one wants to hear the clown in pain. 'Cause that's not funny!

And my humor is becoming dark and it's becoming biting and it's becoming hateful and the talent coordinator is seeing that there's a problem because NBC is all about 'nice' and 'everything is going to be okay' and we're starting to buck horns because he wants everything light and I wanna be honest and tell life, and I'm hurting, and I want everybody else to hurt!

Because somebody is to blame for this!

So I buck up, and I suppress my anger and I form and develop a nice cute routine for the second Tonight Show. And i get applause breaks and I get asked to come back for a third time. And I'm perfecting my third set when a doctor asked me to come in, and I know something's wrong because even the doctor is crying.  And doctors don't cry.

And he says 'We've done all we can. There's nothing else for us to do.'

And I say 'how much time does she have?'

And he says 'at the most, at the most, six weeks'. And I should plan for that. 

And I'm thinking how do I plan for that?

I have a plan to buy her her first bicycle. I have a plan to walk her to school. I have a plan to take pictures of her on her prom. I have a plan to walk her down the aisle to get married ... how am I going to plan to buy her a dress to be buried in.

And I'm trying to keep it together, 'cause I'm the man, and I'm the man of the house,  and I don't wanna cry but it's coming, and I'm trying to tell myself, 'Tony', I'm trying to beg the world 'just give me a chance, just give me a chance, just let me take a breath. Stop just for a minute. I wanna call my parents, and tell em 'what do I do'? I don't know what to do. I'm a grown man, and I don't know what to do.

And a voice in me, comes up like Denzel from Training Day 'man up nigga! You think you're the only one losing kids today! Twenty five kids walked in here with cancer, only five walkin out! This aint no sit com. It don't wrap up all nice and tidy in thirty minutes. This is life. Welcome to the real world!'

And he was right. So I bucked up. Because that's what I'm supposed to do. And on my third Tonight Show, and by that time my daughter had died, and I had six applause breaks that night.

No one knew that I was mourning. No one knew that I could care less about The Tonight Show or Johnny Carson. In 1990 I had three appearances with the legendary Johnny Carson and a total of 14 applause breaks.  And I would have given it all if I could have just one more day sharing a bag of french fries with my daughter.

It was the best of times.

It was the worst of times.

Thank you.

Robert Rabbin: 'I don’t care if cancer is still with me or not, because I’m living with something truer', response to terminal cancer diagnosis - 2015

To listen to this speech, select track three in this list.

13 April 2015, Los Angeles, California, USA

I don’t know what you were doing in November 2011, but I was in Bali, teaching a weeklong retreat based on my eighth book, The 5 Principles of Authentic Living. For six months prior to Bali, I had suffered from muscle spasms in my back that would buckle my knees, drop me to the floor, and blind me with pain. I could scarcely walk, but I had committed to teaching in Bali, so I loaded up on painkillers and flew from L. A. to the retreat site.

When it was over, I was finished: exhausted, weak, sick, and in pain. I knew I couldn’t make it back to L. A. Instead, I went to the much closer Australia, where I had recently lived for six years. I went downhill fast. Lying down, I couldn’t lift my legs; I could barely wiggle my toes. On December 24th, yes, Christmas eve, I was admitted to the ER of a local hospital.

I didn’t know that I was entering a school that would soon transform everything I had ever known or been. A few days later, I was diagnosed with stage 4 lung cancer — you know, the terminal kind. My spine, pelvis, and hips were riddled with tumors. I was rushed into a series of radiation treatments, which relieved the pressure on my spinal nerves and prevented me from losing my legs to paralysis.

That was the good news. The other news was that, statistically, I had six months to live. But seeing as how I’m standing before you this evening, it’s clear I’ve exceeded the doctors’ predicted expiration date by nearly three years. I’m quite happy about this; not so much because I’m still alive, but because I always take delight in doing what I’m not supposed to do.

And just for the record, I am not a statistic. When word got around that I had become a spring-break hotel for millions of cells-gone-wild, teachers and teachings came from everywhere. Oncologists, metaphysicians, friends, colleagues, students — all had suggestions as to how to fight cancer. I received tips about nutrition, emotional clearing, European and Mexican clinics, cannabis oil, breath work, psychic intervention, herbal supplements, and, of course, juicing.

I started thinking that if cancer didn’t kill me, this well-meaning but overwhelming tsunami of information would! But then I received a message from my meditation teacher, Swami Muktananda — with whom I had lived and studied for 10 years. Even though he had died in 1982, he managed to get this message to me: “Robert, don’t say you have cancer; if you must say something, just say that you are holding the space for cancer to visit you temporarily.”

That message triggered a game-changing epiphany. I decided that cancer was a condition, not my defining reality. I decided that my response to cancer would create my reality. So, I shifted the focus of my listening from outside to inside, where an irresistible voice started speaking to me from the depths of my being, but in silence.

This inner silence taught me many things — about cancer, the nature of self, and living authentically, which has been the focus of my life since I was 11. When I began “holding the space for cancer to visit me,” a lot of people started telling me what I should do.

It was tempting to simply obey the “experts,” thinking that they knew. Yes, they knew what they knew, but not what I was beginning to know, courtesy of silence. For example, not long after my last chemo treatment, my doctor asked how I was getting on with my life. I told him. I didn’t go out, socialize, exercise, or take walks on the beach. I didn’t have a pet; not even a houseplant. I hadn’t joined a cancer support group. I didn’t have any burning ambition or clear goals. I wasn’t having sex, with myself or anyone else.

He said I was clinically depressed and prescribed anti-depressants, which I assured him I would take, but I never did. He didn’t understand that in my solitude and silence, I was being taught important, maybe life-saving things. I did listen to the experts, but I didn’t automatically do what they said. I didn’t let them choose what I should do. I realized that it was up to me to choose.

So, I developed a discerning disposition. I questioned everyone and everything until I was satisfied. I wasn’t bullied or intimated by what anyone told me to do. I challenged the status quo of convention and popular opinion. For example, in all the messages I received, it was clear that no one wanted me to die. That was nice to find out. Everyone wanted me to fight hard and defeat cancer.

But I never felt that I should go to war and fight to survive. I thought it was better to become friends with cancer. I wasn’t afraid of dying, nor angry about this sudden turn of events. I was at peace with the prospect of moving on, even though there were still things I wanted to do, like teach what I had learned about authentic living and speaking truthfully.

Still, I felt that death was not my enemy; after all, it has been with me from the first moment of my existence. I know I disappointed many people when I told them I had made death my friend and that I wasn’t going to start a war against cancer. During the months of my chemotherapy treatments, I could only eat refried beans and fried eggs and drink watermelon juice. I dropped forty-five pounds. My body glowed with toxicity. I spent twenty-three hours a day in bed. I was barely a vegetable.

But my attention had turned from “terminal” cancer to inner silence. I started going on numerous trips to . . . I don’t know where. I called them pony rides to oblivion. My consciousness left me and went where I couldn’t track. Each time my consciousness returned, it came back with less of me than when it had begun that journey.

One day, I ceased to exist in the way I had existed up until that time. Those pony rides to oblivion devoured everything I had ever known as “me”: page by page, the history of my life was shredded — all the mental photos, memories and mementos — gone. Desires, goals, aspirations, fears, hopes, wishes — gone. Time disappeared. Conceptual language collapsed. Everything I had been, everything I had known, everything recognizable was gone — except silence, and what comes to life in silence.

It’s hard for me to say what came alive in silence, what is alive within me now. Since my pony rides to oblivion, words themselves don’t have the same power to convey meaning, though I love words and speaking: my professional motto for 30 years has been “Have Mouth, Will Travel.” What really matters now is where my words come from. I know the difference between speaking about, and speaking from, the difference between philosophy and embodiment. I can recognize the difference between surface and depth, between petty and profound, between trendy and timeless beauty.

I don’t care if cancer is still with me or not, because I’m living with something truer, something that silence installed in me as a kind of existential app that has erased all other programs, leaving me with this: I live from my soul. If I want to say something from my true heart, I say it now. If I want to do something from my molten center, I do it now. I live from deep silence, and that makes me happy because maybe now I can do what I’ve tried to do my whole life: be a blessing to myself and to everyone I meet, and bring some much needed grace into this world.

Tony Wilson: 'Fine thanks, and you?', Cancer Council Arts Awards, 2012

29 July, 2012, Melbourne Australia

As always, it's a pleasure to be here today - this ceremony for me always has an almost ecclesiastical feel, as we share and honour work inspired by the pain and trauma of a cancer diagnosis. My category is the young writers category, and the task of judging these pieces is, I promise you, a half day, half box of tissues affair. But the standard is always exceptional and this year, I promise, is no exception.

We all know our own pain best. I don't wish to deflect from the outstanding work of young writers in the audience today, nor do I wish to conflate my pain with theirs. But given the cathartic notes this event is capable of adducing, I'll ask your permission to share a little of my past year, particularly in light of one entry that had an enormous impact on me.

I haven’t felt comfortable speaking much about Jack’s cerebral palsy. We found out on my wife’s birthday last year, a devastating ‘can you come in’ phone call from a paediatrician on the eve of our son’s discharge from the Mercy’s Special Care Nursery.

Amidst the intermittent joy of having a new baby, it’s been a year full of uncertainty and fear. How severe will it be? What faculties will be affected? Will he walk? Talk? Go to school? Have friends? Leave home? Fall in love?

Will he be okay when we die?

Will he be okay?

The best advice any medical practitioner gave me over the twelve months was a GP at Clifton Hill Medical Centre. ‘Stop trying to imagine the future because you won’t get it right. Life’s too mercurial for any of us to imagine what’s going to happen.’

I have been almost entirely unsuccessful at following this advice.

Nevertheless, I stand here today, and I feel capable of articulating the pain. The sharp grief of twelve months ago has been worn smooth by simple effluxion of time.

It’s my fifth year doing this job, and it’s always an emotional ceremony. As most of you know, the idea of the awards is that people who have been touched by cancer express their experience through art – whether it be film, photography, visual art, poetry or short stories.

Last year, as I stood here, I was full to the brim with my own sadness, and it overflowed into great show stopping sobs. I battled on, embarrassedly aware that everything had suddenly become about me, even when so many of you have your own battles, your own dark clouds to worry about.

Today, I won't fall apart. Certainly not in that way. Possibly because I’m feeling stronger, that the sadness for the loss of the dream of a perfect baby has been healed by time spent with the wonderful baby we do have. For Jack is wonderful, and the easiest parts of what has been a harrowing journey have been those spent with him in arms. But just as likely, it’s passage of time.  Maintaining the grief is as exhausting as maintaining the rage, and although the sadness is no longer so fresh that I’m breaking down in public situations, I’m still looking at every alert, crawling, fully-sighted one year old and thinking ‘not my baby’, and I’m still looking at active, able bodied adults and thinking ‘will he ever?’.

How does it go again? ‘Stop trying to imagine the future because you won’t get it right.’

The other consistent advice we have been given by other parents of children with disabilities is to accept help, support each other, and enjoy the victories when and if they occur. A poem we’ve been forwarded several times is ‘Welcome to Holland’ by Emily Pearl Kingston. It’s right about the windmills – they are very nice – but it’s also right about the pain. We wanted to go to Italy.

Of course pain is inevitable. it’s impossible to reach middle age without facing one or all of death, illness, unemployment, estrangement, betrayal, rejection or failure. One of the privileges of judging the Cancer Council Arts Awards is that the entrants lay bare their pain in a way that takes a courage and openness that I, as a writer, rarely feel capable of. Indeed I’m only saying this because these young artists we're honouring today inpsired me to do so.

There were many great entries, all of which are profiled on the Arts Awards website. You can vote for a favourite as part of the People’s Choice award. Here are a few of my mine:

In the children’s visual art category, Lanya Johns painted this amazing piece ‘Three Faces Have We’. Her artist statement reads:

“I remember hearing my Mum talk about a quote once that goes something like, ‘Everybody has two faces – be careful of those with three’. I feel sometimes like cancer has given us three faces. There is the public smiley face, the private and terrified face – and then the face that we all try to protect each other from seeing. We are lucky we three. We have each other, and all our faces.”

In the adult’s visual art category, the commended entry was ‘Ben’ by Vanessa Maccauley

In the Indigenous Art category, Rex Murray painted this affecting piece about the feeling of helplessness he had dealing with the death of his brother, the strong, active kid that he used to jump into rivers with as a kid.

And in the Children’s Writing section, the one that I judged, the winning entry was this tribute by Mena Sebo to her Mum, ‘I Love You as Much as You Love Me’.

But maybe the piece that spoke to me more than any other was the one I awarded the top prize in the Youth Writing section. It’s a poem by Elle Richards, ‘What goes unsaid’ and it’s about the everyday ‘how are you’ gambit that opens so many of our social interactions. It's called, 'What goes unsaid'

What Goes Unsaid

A friend stops and waves,
“Hey! It’s good to see you, how are you?”

I was only twelve.

Cancer had lurked in my hallway; tapped on my window.
It had seeped through the cracks in my wall.
I had breathed it in, let it fill my lungs.
It never left me,
never stopped haunting me.
Good morning Cancer,
but never goodnight.
It had shadowed the dark,
followed me to school.
It had entwined itself in my thoughts,
left me sleeping with the light on,
afraid of its presence,
angry at its power.

I had sat by as chemotherapy claimed my mother’s hair,
turned her skin yellow and made her bones weak.

I had watched radiation therapy.
Seen my mother’s body burned by clunking machines.
The machines had no feelings, they burned scar upon scar.
But my mother had feelings, and she cried.
A lot.

I had screamed.
Slammed doors, punched pillows.
I had felt anger claw at my stomach;
it had made me feel sick and alone.
I had let tears run to my mouth and soothe my cracked lips.
I cried until I felt no emotion at all. None.

I had seen my mother break down in the kitchen.
Screaming, panicking.
She had curled herself in a ball; hugged her knees and screamed.
I had sat next to her; I didn’t say anything.
I didn’t touch her. I just sat there.
Next to her.
Just as afraid.
I had been jealous of the gifts that landed at our front door.
Beautiful soaps and chocolates.
One after the other.
Not for me.
Not a single card or flower.

I had seen her with only one breast.
I had seen her, too sick and too tired to move.
I had seen my mother tangled in tubes.
Covered by white sheets,
white pillows,
white walls,
white floors.
And unnaturally white skin.

I had checked on her every morning.
Every
single
morning.

I checked while she was sleeping,
hoping she was just sleeping.
I had slipped into her bed and wrapped myself in her blankets.
I had gently maneuvered myself between her warm arms and cuddled my head near
her chest. Gingerly. Carefully.
I had rested my chin near the scars that were her breast.
And laid there, warm and comfortable,
but still afraid.

Always afraid.

But every scar on my mother’s chest,
every tube in her arm,
every tear on her face,
made me stronger.

And I believed if I gave all my strength to my mother, she would live.

So I blew it into a purple crystal and put it by her bed.

Now this man is smiling at me, asking how I am.
And it takes all my strength to reply simply;
“I’m good thanks, and you?”

Congratulations Elle. Congratulations to all our winners. Thank you.