Latest / The Front / Neale Daniher: The voice MND cannot silence

Transcript

Neale Daniher: The voice MND cannot silence · The Front

• 0:03
  Speaker 1: From The Australian. Here's what's on the front. I'm Claire Harvey.
• 0:06
  Speaker 1: It's Friday, December twelve, twenty twenty five. One of the
• 0:12
  Speaker 1: youngest members of a prestigious Melbourne AFL family has been
• 0:16
  Speaker 1: unmasked as a rapist. Tom Sylvanny is the son of
• 0:20
  Speaker 1: Carlton legend Stephen Sylvanni and TV presenter Joe Sylvanny. The
• 0:25
  Speaker 1: twenty three year old was convicted on December five of
• 0:28
  Speaker 1: raping a woman twice after a house party. His identity
• 0:32
  Speaker 1: was revealed after a suppression order was lifted by the
• 0:35
  Speaker 1: Victorian County Court. The Australian government made more than seven
• 0:42
  Speaker 1: billion dollars in tax revenue from legal tobacco sales in
• 0:46
  Speaker 1: the past financial year, but it lost almost double that
• 0:50
  Speaker 1: to the illegal trade. Those stories are live now at
• 0:54
  Speaker 1: the Australian dot com dot au. You can't dictate your circumstances,
• 1:02
  Speaker 1: but you can control how you respond. That's the central
• 1:06
  Speaker 1: message in a new book by Australian of the Year
• 1:09
  Speaker 1: and AFL star Neil Danaher. And today, even though Danaher
• 1:13
  Speaker 1: has lost his voice to the ravages of motor neurone disease,
• 1:17
  Speaker 1: you're going to hear his words in his voice, sharing
• 1:21
  Speaker 1: some of the wisdom he's gleaned from more than a
• 1:24
  Speaker 1: decade living with this incurable, untreatable, terminal illness. Stay with us.
• 1:38
  Speaker 2: Life will throw difficulties that none of us get a
• 1:42
  Speaker 2: free run. But you still get to choose your attitude,
• 1:46
  Speaker 2: your effort, your response, and the meaning you make from
• 1:51
  Speaker 2: what happens.
• 1:55
  Speaker 1: This is the voice of Neil Danaher, a legendary former
• 1:59
  Speaker 1: coach player in the game of Ossie rules Away it
• 2:03
  Speaker 1: goes Neil Danahoe, when are you gonna go a toper goot?
• 2:06
  Speaker 3: Kick Neil dan.
• 2:09
  Speaker 1: Despite what you just heard, Neil Danaher, the twenty twenty
• 2:13
  Speaker 1: five Australian of the Year, cannot speak. Neil has for
• 2:17
  Speaker 1: the past thirteen years lived with motor neuron disease, a terminal, degenerative,
• 2:23
  Speaker 1: incurable illness that has robbed him of not just the
• 2:26
  Speaker 1: speed and strength that made him a star at Essendon
• 2:29
  Speaker 1: throughout the eighties and the big presence that made him
• 2:32
  Speaker 1: a rock star coach for decades beyond. Neil's now also
• 2:37
  Speaker 1: lost the basic abilities we all take for granted, walking,
• 2:41
  Speaker 1: breathing comfortably and talking. Technology does enable Neil to write
• 2:47
  Speaker 1: using his eye movements to form letters and words, and
• 2:50
  Speaker 1: now it's also able to recreate his voice from the
• 2:54
  Speaker 1: thousands of recordings over a life in the public eye.
• 2:58
  Speaker 1: To mark the publication of his new book, Neil wrote
• 3:02
  Speaker 1: answers to questions posed by the Australians Fiona Harari, and
• 3:06
  Speaker 1: then this remarkable text to speech technology brought his words
• 3:10
  Speaker 1: to life for us.
• 3:12
  Speaker 2: My book isn't about pretending everything's easy. It's about reminding
• 3:17
  Speaker 2: people that even in the toughest moments, you're not powerless.
• 3:22
  Speaker 2: You can choose courage, gratitude, responsibility, hope, connection, and those
• 3:29
  Speaker 2: choices made again and again can change your life. That's
• 3:34
  Speaker 2: the message I want to leave with people. Your circumstances matter,
• 3:38
  Speaker 2: but your choices matter more. Choose wisely.
• 3:44
  Speaker 1: Neil Dana has book which is out now is called
• 3:46
  Speaker 1: The Power of Choice.
• 3:49
  Speaker 2: If there's one thing I'd like people to take from
• 3:53
  Speaker 2: their story is that we all have more choice than
• 3:56
  Speaker 2: we realize.
• 4:00
  Speaker 3: In many, many years and quite a few decades of
• 4:03
  Speaker 3: being a journalist, I've never done an interview like this.
• 4:06
  Speaker 3: In retrospect, I probably went in way too naively.
• 4:11
  Speaker 1: Fiona Harari is speaking to the fronts.
• 4:14
  Speaker 3: Christen Amiot I've been wanting to interview Neil Danaherth the
• 4:19
  Speaker 3: Australian of the Year for some time, and it's coming
• 4:22
  Speaker 3: towards the end of the year and I thought it
• 4:23
  Speaker 3: would be a good time to try and do a
• 4:25
  Speaker 3: profile of him. And then fortuitously, he's just got a
• 4:28
  Speaker 3: new book out called The Power of Choice, which he's
• 4:31
  Speaker 3: written for his grandchildren with the expectation that he won't
• 4:35
  Speaker 3: live until they're adults, and he wanted to leave them
• 4:40
  Speaker 3: some of his thoughts on how to live a good life.
• 4:43
  Speaker 3: So I picked up this book and I started reading it,
• 4:45
  Speaker 3: and you know, being a bit of a cynical journalist,
• 4:47
  Speaker 3: I wasn't expecting much and I was really moved at
• 4:52
  Speaker 3: how pragmatic and practical and authentic this man is in
• 4:58
  Speaker 3: his view of life.
• 5:02
  Speaker 1: We asked Fiona to record the questions she asked Neil
• 5:06
  Speaker 1: danaher His answers are written by himself, but voiced by
• 5:09
  Speaker 1: an AI model created from real samples of his voice.
• 5:14
  Speaker 1: We stitched the two recordings together for you today.
• 5:19
  Speaker 3: What has your diagnosis taught you that you wish you'd
• 5:21
  Speaker 3: known earlier in life?
• 5:23
  Speaker 2: We all have our ways of shifting our own death
• 5:26
  Speaker 2: from our consciousness. We do so as a society as
• 5:30
  Speaker 2: well by isolating the ageed so the terminal diagnosis was
• 5:35
  Speaker 2: a sharp reminder that death is part of the cycle
• 5:39
  Speaker 2: of life and gives you a heightened appreciation of life
• 5:44
  Speaker 2: that you tend to take for granted when you're in
• 5:47
  Speaker 2: good health. And it also taught me the value of
• 5:50
  Speaker 2: slowing down. MND forced me to be present, and I've
• 5:55
  Speaker 2: realized how much meaning sits in the small, everyday man.
• 6:00
  Speaker 2: It's also sharpened my sense of what really matters When
• 6:05
  Speaker 2: life narrows. Your priority has become clearer. People, purpose and
• 6:10
  Speaker 2: contribution rise above everything else. And finally, it's given me
• 6:16
  Speaker 2: a deeper humility. You learn quickly that you can't control
• 6:21
  Speaker 2: everything and you don't need to. That acceptance has brought
• 6:25
  Speaker 2: a calm I didn't have in my earlier years. These
• 6:30
  Speaker 2: are lessons I came too late, but they've changed the
• 6:34
  Speaker 2: way I live now.
• 6:37
  Speaker 3: What I didn't realize when I sought to have this
• 6:40
  Speaker 3: interview was how incredibly restricted his life is and part
• 6:44
  Speaker 3: of the way in which he has promoted his illness
• 6:49
  Speaker 3: and been able to be involved with raising a staggering
• 6:53
  Speaker 3: one hundred and thirty million dollars for research towards an
• 6:56
  Speaker 3: illness in which there really wasn't much research being done
• 7:00
  Speaker 3: until the last few years. In some ways, it's sort
• 7:04
  Speaker 3: of hidden, I felt watching on TV watching videos. You
• 7:08
  Speaker 3: see him in a wheelchair, you see him smiling and
• 7:11
  Speaker 3: not speaking. But it's not until you get closer that
• 7:15
  Speaker 3: you realize this man is projecting really positive attributes, but
• 7:22
  Speaker 3: not in a sugary, saccharin way, in a very authentic way,
• 7:25
  Speaker 3: and he's doing it at a time where his life
• 7:28
  Speaker 3: is becoming increasingly constricted. So I approached his publisher and
• 7:34
  Speaker 3: they contacted him, and they came back some days later
• 7:37
  Speaker 3: and said, yes, he will do an interview. But he
• 7:41
  Speaker 3: can barely move, he can't speak anymore, and he requires
• 7:45
  Speaker 3: I Gaze technology in order to communicate. And the one
• 7:49
  Speaker 3: thing you notice straightaway is that although so many other
• 7:52
  Speaker 3: parts of his body is shutting down, his mind is
• 7:55
  Speaker 3: incredibly sharp. And the frustrations he must have had to
• 7:59
  Speaker 3: deal with watching so many parts of his body shut
• 8:03
  Speaker 3: down had he not had this technology, would have been horrendous.
• 8:06
  Speaker 3: But he's harnessed it in the most extraordinary way because he,
• 8:11
  Speaker 3: with the help of a publishing consultant, has been able
• 8:14
  Speaker 3: to produce this extraordinary book without being able to type,
• 8:19
  Speaker 3: without being able to talk, and really restricted physically, but intellectually,
• 8:26
  Speaker 3: he's just this extraordinary man.
• 8:29
  Speaker 4: Some of these lessons Obviously, being a football coach, it
• 8:31
  Speaker 4: was his trade to motivate people, to inspire people to
• 8:35
  Speaker 4: go out there and run into men the size of
• 8:37
  Speaker 4: fridges running at them in the other direction. Does he
• 8:40
  Speaker 4: even indication is that maybe some of these lessons he
• 8:43
  Speaker 4: might not have learned had he not been diagnosed with MND.
• 8:47
  Speaker 3: It's certainly been a catalyst. And he doesn't say he
• 8:50
  Speaker 3: regrets anything in his past. It's just reframed the way
• 8:52
  Speaker 3: he looks at things. So he's not at all preachy.
• 8:56
  Speaker 3: He from what I understand, was always a reader. But
• 9:01
  Speaker 3: he has spent a lot of time thinking since he
• 9:04
  Speaker 3: got this diagnosis, and he uses the word transcend a lot,
• 9:08
  Speaker 3: and he has managed to break through a barrier that
• 9:12
  Speaker 3: probably most of us who are not confronting what he is,
• 9:15
  Speaker 3: would not even contemplate. He has been able to look
• 9:20
  Speaker 3: at the flip side of many of the things that
• 9:22
  Speaker 3: we take for granted in life. So rather than why me,
• 9:27
  Speaker 3: he got to a point where he started thinking, well,
• 9:29
  Speaker 3: what next, and that sort of thinking is what inspired
• 9:32
  Speaker 3: him to set up Fight MND, this extraordinary charity that
• 9:35
  Speaker 3: he's set up that's helped raise one hundred and thirty
• 9:38
  Speaker 3: million dollars for research in Melbourne. The Big Freeze is
• 9:44
  Speaker 3: a huge part of Melbourne's winter these days. So that's
• 9:47
  Speaker 3: when on the King's Birthday weekend at the MCG celebrities
• 9:51
  Speaker 3: turn up and dress up and slide down into this
• 9:57
  Speaker 3: freezing cold pool of ice.
• 10:00
  Speaker 4: Two one go.
• 10:05
  Speaker 1: And she goes trying to keep the face out of that.
• 10:08
  Speaker 3: One's told she said, look at.
• 10:10
  Speaker 1: That, she's duck padling to try and get out as
• 10:13
  Speaker 1: quick as she can. You wouldn't believe it.
• 10:15
  Speaker 3: And in June when it happened this year again, he
• 10:17
  Speaker 3: was already quite unwell then and he got a standing
• 10:20
  Speaker 3: ovation pretty much from the eighty five thousand strong crowd.
• 10:25
  Speaker 3: But the other thing was really noticeable was that an
• 10:28
  Speaker 3: enormous number of these people had blue beanies on. And
• 10:30
  Speaker 3: the blue Beanies, I understand that the side of them
• 10:35
  Speaker 3: has become even more than the Big Freeze event itself,
• 10:37
  Speaker 3: a quintessential Melbourne winter site these days. People wear them
• 10:41
  Speaker 3: everywhere and I understand that those sales as well, are
• 10:44
  Speaker 3: contributing to the money that they're raising for research. He's
• 10:47
  Speaker 3: obviously not the first person to raise money for modern
• 10:49
  Speaker 3: your own, but I think it's fair to say he
• 10:52
  Speaker 3: has focused way, way more attention on it than anyone
• 10:56
  Speaker 3: else has been able to so far. He knows that
• 10:59
  Speaker 3: he won out livers, but he truly believes that it's
• 11:02
  Speaker 3: possible to find a cure. At the moment, there's no
• 11:05
  Speaker 3: known cause, and there's no known cure.
• 11:12
  Speaker 1: Coming up. More of Neil Danaher's wisdom.
• 11:37
  Speaker 3: Your mind seems to be one of your great strengths.
• 11:40
  Speaker 3: Have you changed the way you think?
• 11:42
  Speaker 2: Yes, I've changed the way I think in some important ways.
• 11:46
  Speaker 2: Vulnerability is a big one. Another shift has been around beliefs.
• 11:51
  Speaker 2: In my younger years, I could be pretty black and
• 11:54
  Speaker 2: white in my thinking. Yeah, once I formed an opinion,
• 11:57
  Speaker 2: I held it tightly. Now I understand and the importance
• 12:00
  Speaker 2: of updating your beliefs, asking more questions, and staying open.
• 12:06
  Speaker 2: Stubbornness isn't strength, curiosity is. And I've changed the way
• 12:12
  Speaker 2: I think about challenges. For a long time, like many people,
• 12:16
  Speaker 2: I saw setbacks as things that happened to me. Now
• 12:19
  Speaker 2: I try to look for the opportunity inside them. That
• 12:23
  Speaker 2: mindset shift from why me to what now has made
• 12:28
  Speaker 2: all the difference. It doesn't remove the hard stuff, but
• 12:31
  Speaker 2: it gives you a way to move through it with purpose.
• 12:35
  Speaker 2: So yes, my mind is one of my strengths. But
• 12:38
  Speaker 2: it's grown stronger because they've been willing to rethink old
• 12:42
  Speaker 2: ideas and choose better ones along the way.
• 13:00
  Speaker 1: Rari is a senior journalist with The Australian. You can
• 13:02
  Speaker 1: read her story right now at The Australian dot com
• 13:05
  Speaker 1: dot au and Neil Danaher's book, The Power of Choice
• 13:09
  Speaker 1: is in bookshops now