Neale Daniher reveals his three secrets to happiness as he continues fight with MND
As he prepares to mark the incredible milestone of living 10 years from his terminal diagnosis, Neale Daniher has shared what motivates him and what he is grateful for.
Victoria
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It isn’t often someone has the opportunity to show a nation how to deal with adversity.
Neale Daniher did, and has.
Since Neale’s diagnosis with MND in 2013, Neale has found a sense of purpose, courage, bravery and positivity that few in his situation would contemplate.
In typical Daniher fashion, Neale looked at the cards he had been dealt, and determined what could be achieved, rather than what couldn’t. He looked at what could be gained from his situation, rather than what he’d lost.
And since his diagnosis, Neale has started a movement with the Big Freeze and FightMND.
He has put the dreaded disease in the crosshairs, and into our consciousness.
He has united us in the fight against the opponent he calls “The Beast”.
He has raised tens of millions of dollars, and ensured it has been put into the hands of those who are best placed to research how to find a treatment, and ultimately, a cure.
He has done it selflessly, and ultimately, for others. That is how Neale is.
He often quips “When all is said and done, more is said than done”.
Not with Neale.
Neale and I had always known each other, but became closer when one of my closest friends, Ange Cunningham, died of MND in 2016. She was diagnosed at around the same time as Neale.
When Ange had lost her ability to talk, she had to use technology that allowed her to text and email through using her eyes to type through clever technology. Ange and I did an interview over five months on email. I wanted to do it so Ange could have a voice again, and to give her the opportunity tell her husband Pat, and her kids Maggie and Soph, things she wanted to say. It was a privilege to exchange thoughts with her.
Now, Neale, sadly, can no longer speak or use his hands. But he has the use of similar eye gaze technology that means he can type, slowly.
I missed hearing his voice and talking to him.
I missed hearing his cackle, and seeing his eyes that smile, as his mind thinks amusing things.
I wanted to ‘hear’ from him again.
So I texted Neale on April the 20th.
I wrote “Neale, hope you’re having a day that has given you a reason to smile, at least mentally! Was wondering if you wanted to exchange a few emails for the paper. Like Ange and I did. Back and forth until you can’t be bothered. Might be something you’re keen on. Maybe it’d be something that you’d find terribly boring. Your call. We’d run it before the Freeze. Let me know. Hame”.
Neale replied “Thanks Hame. For sure. Fire away with your first email and we can see where it takes us. Cheers. Neale”
We started trading emails. We finished on the weekend. The exchange is published in today’s paper. I hope you enjoy it, and maybe learn something from it.
I did. I always do when I am around Neale.
And Neale, for the record, I loved the banter, and I love everything you’ve taught us all.
Love you.
The interview two months in the making
Neale Daniher was diagnosed with MND 10 years ago. In that time, he has somehow come to terms with a terminal diagnosis, lived well past the average 27-month life expectancy, and led us all in a movement to raise awareness and funding to ensure some of the best minds in the world are able to work on finding treatment, and a cure, for what he refers to as ‘The Beast’.
Neale is the best in all of us. He has shown us all how we can behave, and what we can do, with a mindset that sees the opportunity in every scenario.
Neale can no longer speak, nor use his fingers or hands, but with eye gaze technology, he is able to type. We emailed back and forth ahead over a few months. I loved the interaction. He is an incredible man who I feel privileged to know.
HM: The footy is on, the autumn leaves are falling, your extended family keeps growing – where are you getting most of your joy from at the moment?
ND: Well, firstly, against the odds I am alive, Hame! So I’m grateful for that. And I am surrounded by a loving and growing family, and very supportive friends and fantastic carers. Being actively involved with FightMND gives me purpose. As they say, Hame, you only need three things for happiness – something to do, someone to love, and something to look forward to. I think I have those three covered at the moment.
HM: Did you realise that you only needed three things before your diagnosis – or were you too busy being busy to realise this?
ND: No, I was aware of this pre-diagnosis, but after being diagnosed with MND, I realised that I had been sweating a lot of the small stuff that comes with being busy at work.
HM: A good lesson. How savage has the past 12 months been to your health compared with the previous 12?
ND: Again, luckily, not as savage as the typical person diagnosed with MND. Someone diagnosed 12 months ago would typically have a year and a half to live. So, in some sense, I’m very lucky compared to others because I have a version of MND that is progressing much slower than the average.
I am in the 5 per cent to 10 per cent group that live an extended period post diagnosis. They don’t know exactly why, but I’m grateful! Also, I survived Covid with the help of vaccines and boosters. It knocked me around, but it failed to kill me. As you know, Hame, I can no longer speak or swallow, and breathing can be difficult at times, but while my body is slowly failing, my mind is fine.
HM: I didn’t know you actually caught Covid.
ND: Yes I did, but even though it knocked me around, I didn’t require hospitalisation. I got lucky, again.
HM: I’m glad. No swallowing anymore – I assume that mean all fluids and food is via tubes?
ND: Exactly, everything down a tube directly into my stomach. I’m very envious when the roast lamb or pork comes out, Hame. Smells delicious! The one positive is I don’t make too much of a mess with the plates!
HM: No dishes, no washing up! What’s the one thing in particular you’d love to taste again? Anything you crave?
ND: I liked my food, Hame, as you know, so it’s a long list food-wise. Plus I’d love to taste a cold beer in summer again, and a glass of shiraz in the deep of winter. Actually, in any season, really!
HM: I remember you saying to me once: “Today is my body’s best day, because this disease ensures tomorrow will be a little worse.” Has the deterioration slowed, or sped up?
ND: I think the deterioration has been consistent. Maybe it might have sped up and I am just in denial – haha! There are probably tools to measure my progression, but I don’t need to know. I just have to avoid respiratory illnesses as best as I can, and avoid falling over as my arms don’t work and can’t protect me if I fall.
HM: Your legs are still strong enough to walk about and do a lap of the backyard?
ND: Yes, it’s due to the disease starting in my upper body, so I still can walk, luckily. I’m limited in how far I can go, but I like to get outside each day. The distance and speed I travel may have declined, but my dog doesn’t complain too much! I try and learn from my dog. Haha!
HM: You’ve never complained, I know that. Are you in daily pain?
ND: No, thankfully (body cramps don’t count do they, Hame?). It is more akin to a spreading paralysis. Parts of your body just slowly shut down. With me, it started in my hands, and then my arms, then my upper body and neck, and just recently my swallowing and my speech. In others it might start in feet and legs. In others it might start as slurred speech and it doesn’t stop until it shuts down your whole body.
HM: No, speech makes it hard to remind everyone how funny you are!
ND: I have to admit my timing with my jokes has never been my strong suit, and now that I am forced to speak via a computer using my eyes to type, which is slow, it’s got even worse. Often by the time I have spoken via the computer with my witty funny comeback, the conversation has moved on! I still laugh, though!
HM: I know you’re funny! You’re now like the new generation out there – you’re texting constantly. But with purpose! Thank God for the new technologies.
ND: I’d be at a loss without it. The computer software I am using with my eyes is pretty incredible. My hands don’t work anymore, so texting via my phone is no longer an option. I can still SMS via my eye gaze computer. The eye gaze is a saviour and how I’m typing my responses to you now.
HM: Other than being able to text and type, what independence do you still have, and how do you make your days productive and satisfying with the tools you have left?
ND: Well, I need full-day care, but I have the world at my fingertips – or should I say eyeballs – via the computer and the internet. I love reading, and being exposed to thinkers, ideas (new and old), and podcasts. Everything is there, and I try to find it all. As I said, there’s nothing wrong with my mind, so even though I can’t physically go for a run each day, I can still take my brain for a run each day. I can’t speak, but I can keep in contact with everyone via SMS, email and the like.
HM: I remember Ange Cunningham saying to me as her body was failing her: “My mind has never ever been sharper, nor my hearing.” Does that ring true?
ND: I know you were close to Ange, and yes that rings true. The thing I remember about when she said to you, “what a privilege”. Remember that? And again, she was right.
HM: I do. I said on my birthday to her, via text, when she sent me a happy birthday message, “I’m getting old and feeling old, Ange” or something similar, in an off handed way. She said “What a privilege!” using her eye gaze computer. I’ve never forgotten it. She also said “I can listen in to three or four conversations at once and be across all of them – and don’t understand why so many people miss so much detail”. She sounded like her mind was operating at a level she had never reached before, while her body was letting her down.
ND: Unfortunately, I haven’t got that listening superpower yet (haha). I am getting plenty of practice in ‘listening and not speaking’ over the last few years, as my ability to speak started deteriorating and now has come to an end. It is extremely frustrating, but it might be the universe’s way of telling me, “Hey Neale, it’s time you need to realise why you were given two ears and only one mouth, you need to listen more!”
HM: The world misses the Reverend speaking. How are you sleeping? I remember Ange was up for much of the night.
ND: Well, sleeping can be a challenge at night given my breathing difficulties. However, I’m assisted by being hooked up to a CPAP machine overnight that pumps air into me, which has been great. I’m definitely in bed overnight longer than I used to be. I’m not sure I am sleeping more though overall, as it’s very broken sleep. I try to avoid sleeping during the day unless I am ill.
HM: What or who are you reading or listening to that you wished you’d found earlier?
ND: How long have you got? I find reading eBooks and listening to podcasts where they are specialists in their fields in some sense a pretty humbling experience. It just reinforces how little I know, to be honest, Hame! However, that is what I enjoy: trying to learn something each day, being a little smarter today than I was yesterday.
HM: I played my kids a bit of video of Kobe Bryant tonight saying something similar. Along the lines of, “At the end of every day, ask yourself ‘did I get better today?’”. And if you can, and do, via a series of small steps, over 15 years, you’ll be amazed at how good you will become. But you have to move forward each day”. If you break things down as simply as that, it isn’t difficult to see how you would become world class, but as with everything, it takes application and dedication, and a singular focus.
ND: I can see his logic clearly. The ‘compounding principle’ is a good one to learn early in life, not only for investing, but in life. Everyone is looking for a hack to be a success tomorrow, but I have learnt nothing worthwhile in life – a friendship, a family, career, a business – happens quickly. It all takes time, sometimes a lifetime. It seems only bad things happen quickly!
HM: Have you become a quasi-expert or an enthusiast in anything given the time you now have to read and digest and explore the world?
ND: Sorry, I definitely can’t boast of being a quasi-expert on too much, but I can say I am an enthusiast around squeezing what I can from life. Life can be tough at times – for everyone – but so what, we all learn eventually that life never promised to be fair! Given that, your life’s biggest, most important moments are often defined in how you respond in tough times, and I am very conscious of that. Responding in the right way, with the right attitude, is critical.
HM: You are certainly doing that. Were you taught this at home by Mum and Dad, or did you learn it yourself?
ND: I think I learned it from many people and many situations that helped me through my life journey. It started with my parents on a farm in the middle of NSW with my 10 brothers and sisters. When your mother and father work their backsides off to put in a crop, and do everything right, but then have the crop fail because it doesn’t rain at the right time, you learn very early that life doesn’t promise to be fair. But there’s no use in whinging, you just have to deal with it, and then get on with it. That is what Mum and Dad did.
HM: Brilliant people. The Big Freeze has captured everyone’s imagination. Are you still the sole selector of the sliders?
ND: Ha. No, Hame, I’m not the sole selector, I’d rather see myself as Chairman of Selectors! However, no one goes down that slide without getting the nod from the Chairman. Ha!
HM: You starting to think that the choice of beanies over bandannas might have been the right call?
ND: Gee …. I have 99 great ideas, but they all are soon forgotten! I have one miss, bandannas over beanies, and no one forgets! That’s the last time I agreed to wear DeBono’s green hat when brainstorming ideas around the kitchen table with my family!
HM: Remind me … who was the champion of the beanie? And who was all chips in on the bandannas?
ND: To be fair I think my daughters Lauren and Bec and son-in-law Drew Howell drove the beanies idea pretty hard, and were quickly supported by all other family members. I think I was one out on bandannas! However, someone should try to discourage group thinking in such matters. Someone needs to be the contrarian! Surely you agree with me, Hame? Anyway, I think it’s time I ‘man up’ and admit I might have been mistaken! OK, OK, OK, I will say it … I was wrong! The beanies are a very good idea! Are you happy now? Ha!
HM: I’m happy. Very happy. I had dinner with Pat Cunningham last night and he told me the scarfs that are a new edition are selling quickly?
ND: Yes, we thought we would test the concept this year with a small number of scarfs made from pure Australian wool. They were very popular, so we might have to consider many more next year for our 10th big freeze!
HM: OK, who are your best-dressed sliders so far? Give me the votes – 3, 2 and 1 – and don’t sit on the fence here, Neale.
ND: Every slider has been fantastic to give their time and profile freely, and generously, to the cause. I would like to thank them all again. It’s so tough to choose. In the early days, we had Sam Newman in the green mankini, which was brave. My good mate Chris Fagan as the Reverend was terrific, and to have all the AFL coaches going down one year was incredible. Gill McLachlan as Meat Loaf was something, and Ash Barty so good from the Lion King. The list goes on. However for entertainment factor, my 3-2-1 would be: three votes, N. Riewoldt as a sensational Freddie Mercury. Two votes to Mick Molloy who ignored all safety advice and went down headfirst – Mick, will you ever listen! And lastly, Sarah Jones absolutely nailed Mary Poppins.
HM: And then she nailed the ‘supercalifragilisticexpialidocious’ backwards at the end as she froze! Luke Beveridge surfing down, and Liam Picken as the Joker both need a mention. All exceptional.
ND: They all have been incredible. And all done it without ever taking a backward step. I appreciate it immensely.
HM: It’s been a decade where you’ve taught us all so much. Your family has shown us how things can be. What have you learnt from your kids through it all?
ND: My kids, along with Jan, have been so important in supporting me navigate this difficult period in my life. They have been fantastic. We all support each other, as MND doesn’t just impact me, but all of us collectively, especially Jan, as she is with me every day. What my kids remind me constantly though, in this materialistic world, is the best things in life, like care, love, and laughter, can’t be bought or measured in dollars.
HM: Important things. Is there anything else that is so obvious to you now – on how to live or how to view things – that you just missed as you were busy along the way?
ND: Just the real obvious one when diagnosed with a terminal illness – to have a deeper respect for time you have left in your life! When you’re younger, or healthier, you think time is on your side, and therefore you are more likely to take it for granted or waste it. I am less likely to waste it now on things that do not matter.
HM: It’s something that we have been told, but we aren’t living it well enough. I will try harder. What have you discovered about yourself that’s surprised you?
ND: If you asked a younger Neale, he would readily admit that being vulnerable was not his ‘go-to strategy’. Since my diagnosis, I decided to go public, and have basically said: “I need help here!” What I learnt – and what might surprise the younger Neale – is being openly vulnerable, and stating I am in trouble, and I need help, and that is not a sign of weakness. It is the opposite, and it can give you strength through the support of others.
HM: I dare say that it won’t just be the ‘young Neale’ that have only found this out recently. And that accepting your vulnerability is power. Most of us take a while to see it. It feels liberating to say that you don’t know much, are troubled or battling, imperfect and need help. But it’s hard – and not how a lot of us were raised.
ND: You are right, Hame. But life will, at some stage, become hard, very hard. For all of us. We all need help, at some stage, and ‘going alone’ is very often not the best solution. So don’t be afraid to ask for help, it is often the best solution.
HM: Your life has been remarkable in so many ways – on so many fronts. When you look back at it all, what are you proudest of?
ND: I’m really proud of my four children. But to be clear, I don’t want to take too much credit. If there is any parental credit, it goes to their mother, Jan. She decided, even as a qualified teacher, to be a stay-at-home mum, and therefore did all the heavy lifting. Also, credit must go to each of Lauren, Luke, Bec and Ben, as they are adults now, navigating their own life challenges, taking responsibility for their own lives.
HM: They are all incredible people. You’ve always spoken about green shoots that we are seeing sprout in the research results in the fight against The Beast. Have we made more progress that is encouraging over the past few years?
Hame, given I am not a medical researcher, but can I explain it this way? When you are looking for something, it makes sense that the more people that are looking, the better the chance it is you will find it. As you know, we are seeking treatments and a cure, and when we started this journey we, unfortunately, didn’t have many people looking due to a lack of funds. With the wonderful ongoing support from the Australian public, we now have many more experts with their eyes on the prize. Thanks to our supporters, and those looking, our medical researchers have generated a momentum and optimism that has never existed before! I can’t say when we will find a cure, but I know we are getting closer. And for more information on medical research you can visit fightmnd.org.au/cure.
HM: Bloody encouraging. Some random stuff to finish off. Just for the record books: who have been the players you’ve most enjoyed watching play over the years – from any era?
ND: We have the best game in the world, Hame. It caters for all types. The smalls like Libba, the talls like Gawny, the skinny types like Robbie Flower, the nuggety types like Lethal, the magical like the Abletts, the quick like Michael Long, and the not-so-quick but incredibly smart like Diesel Williams. The very best are always great to watch whatever their type.
HM: One book we should all read?
ND: Man’s Search for Meaning by Victor Frankl.
HM: Top Gun or the sequel?
ND: Sequel.
HM: Redford or Newman?
ND: Redford.
HM: Something you wish you had done more of over the years? Joel Selwood said recently he wished he’d smiled more through his career. I wish I had spent more time with my good mates as I got busy.
ND: That is easy. Not to be so earnest, and realise that you can’t control every outcome. That is something, surprisingly, I have actually got better at since my diagnosis. OK, it’s marginal – ha! Small steps, Hame!
HM: Is there anything that you haven’t said – to someone – or all of us – that you wish you had?
ND: Well, there is one thing you won’t be hearing from me today, and that is “goodbye”. I know I may have overstayed my time on planet Earth since my diagnosis, but I just might hang around for a little bit longer – ha!
HM: Stay as long as you like, Neale! What haven’t I asked you that I should have?
ND: Well, I don’t think we can finish the article with me without some reference to music! Anyone who knows me well knows it is my constant companion! All types, all decades. Having ‘good’ music playing in the background soothes me, relaxes me, and takes me to a good place. Sting was in town a couple of months back, and I went with my son Ben. Sting was great, and his final encore song was a solo acoustic version of the song called Fragile. Spotify it, Hame. It’s brilliant. Anyway, he sings about how fragile we all are. We are here today, and gone tomorrow. It is a great reminder to be kind to someone today – maybe even a little kinder to yourself as well.
HM: A nice way to end. A privilege to do this with you, Neale. A joy.
ND: It has been fun, Hame – I’ve enjoyed it. Thank you.
To donate, please head to fightmnd.org.au and help bring down The Beast.
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