Jan and I had just pulled up at a picnic spot at Peppermint Grove on the north bank of Perth’s Swan River. It was Christmas Eve 2012, and we settled in for a few cold drinks with Cam and Sarah, along with Phil and Ingrid Anderson, both farming couples from the wheatbelt town of Tambellup, 300-odd kilometres southeast of Perth. Also joining us were Paul and Mary Lim, all of them families we had grown to know through our sons attending the same school in Perth. Cam’s quip lingered. I’d taken to putting a heat pack on my right hand when playing golf on a crisp morning. The hand had also been giving me some grief with simple tasks, sometimes causing me to fumble a bit when trying to put the car key in the ignition or trying to peg washing on the clothesline.

WHEN ALL IS SAID AND DONE PART 1

But I put it out of my mind for now. It could wait till I was back at work. When I clocked on in the new year at the West Coast Eagles, where I had been general manager of football operations for the past four years, I sounded out the medical staff about my hand. Maybe it was a nerve block, an old footy war wound. They felt it would be best to run some tests. As the tests extended into weeks and months, the outlook became more mystifyingly grim. It was a matter of ruling out possible explanations — multiple sclerosis, Lyme disease, a tumour on the spine. At one point I overheard a doctor confiding to a colleague: ‘We hope this is something we can sort out, a condition we can manage and treat. Hopefully it’s not MND.’

MND? I didn’t know a hell of a lot about Motor Neurone Disease at that point, other than that you didn’t want to get it. Unbeknown to me, others had started to express private concerns about my health. I’d headed back to the family farm in Ungarie, in the central west of New South Wales, for a gathering with Mum and Dad and my 10 siblings. One morning a few of my seven sisters quietly spoke among themselves, wondering about the soft slur in my speech the night before. It didn’t seem to them like I’d had all that many red wines. My older sister, Estelle, was nagged by the similarities to a friend of hers from Wagga Wagga, who had MND.

There seems to be a lot of it in this region, she thought to herself. People in Griffith, Lake Cargelligo, Ariah Park. But nah, not Neale, it couldn’t be. It was a similar story at a golf reunion with my old schoolmates from Assumption College. Apparently there was a bit of private chatter afterwards about me tripping over a few words in the clubhouse bar, and how I must have got the day off to a flying start with a few cold ones before arriving at the first tee. Meanwhile, the medical tests continued: more bloods and infusions, then some nerve conduction studies, which involve taping electrodes over nerves and recording muscle activity when nerves are stimulated by electrical impulses. The doctors were ruling out possibilities, until there was nothing else to rule out. In mid May 2013, my neurologist in Perth laid out his conclusions in a written report, arriving at the judgement that all indicators pointed to MND.

I phoned Jan, who was in the middle of a 10-day stint in New Zealand in her role as operations manager with the West Coast Fever netball team. In the background I could hear the netballers’ runners squeaking on the court as I broke the news. ‘But what does that mean for you?’ Jan asked, her voice beginning to tremble with emotion. Without saying it, she was probably processing the reality that MND is a terminal illness. How much longer did her husband have to live? What would this mean to us? After training wound up, Jan headed back to her Wellington hotel room and googled MND, and what she read sent a wave of disbelief through her body: the average life expectancy for a person diagnosed with MND is 27 months; patients progressively lose the ability to walk, talk, feed themselves, swallow and eventually breathe; at least two Australians die every day as a result of the disease; there is no cure.

She was devastated. Back in Perth, the meticulous, control-freak aspect of my personality kicked in.

All indicators pointed to MND? I wasn’t going to cop that. I needed to know definitively, and began the process of seeking a second opinion that could provide that certainty.

An appointment with a leading neurologist was booked in Melbourne, to coincide with the Eagles’ next AFL match in Victoria. At St Vincent’s Hospital in Fitzroy I would undergo more blood tests, brain scans and MRI (magnetic resonance imaging) scans to determine once and for all what was going on. They would have the results back later in the month. For a man who struggles with patience at the best of times, that wait was purgatory. But being impatient wasn’t going to help my cause this time.

THE bleak overcast sky of a grey Melbourne winter was the first thing that hit me as I walked out of the St Vincent’s Department of Neurosciences a couple of weeks later. I felt surprisingly calm for a man who had just been handed a folder and told: ‘Unfortunately these results confirm that it is definitely MND.’ The neurologist across the desk had then almost remorsefully begun to talk about the need to get my affairs in order. What else could she say? It was only once I was sitting in the taxi to Melbourne Airport that the weight of reality came down on me like a ton of bricks.

I muttered under my breath, ‘Bugger! It’s not something else, it is MND.’ The cab driver looked over at me, wondering if he’d missed a direction. I was straight into what psychologists describe as the five stages in the cycle of grief for people who have been diagnosed with a terminal illness: denial, anger, bargaining, depression and acceptance. Why me? I thought, but the inclination towards denial didn’t last long this time. Nor did the bargaining, where I searched in vain for a way out. Have they’ve mucked up the diagnosis? I hope they have. But I knew they hadn’t and that futile hope faded quickly. Soon there was only anger and anxiety. I sat there staring at this folder I’d been given, with my test results and some literature about MND and a letter from the Melbourne specialist for my neurologist back in Perth. I didn’t open that folder, I just glared at it. And I thought, F — k, I’ll be dead in two years. I didn’t know how it would play out, just that on average MND played out rapidly.

My mind wouldn’t go anywhere else other than: You are about to die. Suddenly nothing else seemed important. It was a lonely cab ride along the Tullamarine Freeway. The four-hour flight to Perth provided ample time for some soul-searching. I was riled as I boarded the plane, looking for a cat to kick. If the passenger in front of me had reclined his seat, I probably would have given him an almighty spray. By the time the Airbus rose above western Victoria, I had a little man on each shoulder, each with a voice in my ear: Mr Positive and Mr Negative.

For the first half of the flight, Mr Negative was nagging away in my left ear: ‘This is the dismal reality, mate. You can’t sugar-coat this one, you’re gone.’ And he was going his hardest to push me towards doom and gloom. But about halfway across the Nullarbor Plain, Mr Positive started to pipe up.

‘How’s that conversation going with your mate?’ he asked, and I replied, ‘Not too good.’ He said, ‘Are you going to put up with him hanging around, chipping away with all of his fatalism? How’s that going to work for Jan, for your kids?’ ‘Probably not that well. I’m not going to be much fun to be around, am I?’ I said. Mr Positive replied, ‘No, to be honest with you, you’re going to be a real pain in the arse if you listen to Mr Negative.’ By the time the plane was descending into Perth, I reckon I was about halfway through that grief cycle. The overriding resolution was that if I descended into a negative ‘victim’ attitude, it was only going to make things worse for my wife, my kids, my mates … and infinitely worse for me.

REALISTICALLY, deciding how to tackle my new reality was not so much a revelation, but was more a buttressing of what I have always understood about the importance of the attitude we choose to adopt. Trying hard and doing the right thing might improve our prospects in life, but there are no guarantees, and sometimes problems and complications arise that are beyond our control. That’s why it’s often important to reframe our perspective. Faced with adversity, once we have had time to absorb the setback and accept ‘it is what it is’, we need to eventually ask ourselves, ‘Where is the opportunity?’ We’re better off gravitating towards and learning from people who have this sort of healthy attitude, rather than hanging around people who are eternally cynical or pessimistic. Cynics will give us the various reasons why something can’t be done and if we listen too long, they’ll probably make us feel as though nothing can be done. Don’t get me wrong: pessimists do have a place in this world, but it’s probably in risk management — if you’re going to embark on a risky endeavour it’s good to have a pessimist on board. So I suggest generally steering clear of cynics and consulting in a pessimist! Life is all about perspective.

BY the time the plane’s wheels touched down on the runway, I was determined not to let my diagnosis beat me into despair. I knew this malicious disease would gradually rob me of my health, my mobility, my breathing and eventually my life, but I wasn’t going to let it take my dignity. I wouldn’t let it kill my spirit. To my mind this was a contemptible swine of a disease, hiding in a dark cave, quietly dragging people in and killing them in the most horrendous way. It helped me to personalise the disease — MND sounded too innocuous, too clinical. So I called it The Beast. An ugly piece of gear, hairy and dark, like a huge hybrid of a blowfly and a moth. I wasn’t sure how, but I was going to take the fight right up to it.

I had confidence that a healthy attitude would help me deal with the tempestuous passage that lay ahead, and that it would help ease the anxiety and distress for my wife and children. But for now, there were family members who needed to hear the news, with no more vague references to an unidentified nerve condition. For Luke and Ben, who were living with us in Perth, it was not just a matter of revealing that I had this disease, it was also a matter of explaining what it was: a progressive, terminal condition in which the nerve cells (neurones) that control the body’s muscles undergo degeneration and die, while the mind and senses would probably remain intact. As an emergency nurse who had worked with MND patients in the respiratory ward, Lauren knew full well the gravity of the diagnosis. The phone call back home to my parents on the family farm was heartwrenching. My mother, wonderfully caring soul that she is, became emotional and promised to pray for me. And with 10 siblings and a fairly extensive bush telegraph network in place, there were many conversations with my broader family. In virtually every discussion I had to explain The Beast — that it would try to strip away everything. How would I deal with such a wretched prospect?

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The freedom to choose my attitude was never more relevant than after that MND diagnosis. I knew that no matter what the disease would take away from me, it would never take from me the freedom to control my attitude, to choose my own way. That conviction was in my DNA. My attitude grew from my inherent beliefs … and those beliefs were sown with care in the baking red dirt of our family farm. Not long after the diagnosis, I had written down one of my mother’s favourite sayings: ‘Count your blessings.’ In doing that, I began to think, Well, maybe I have had a pretty charmed life.

* Edited extract from When All is Said and Done by Neale Daniher, with Warwick Green. Published by Macmillan Australia. Hardcover RRP $44.99. On sale October 24.

THE DAY NEALE THOUGHT HE’D DIE: WHEN ALL IS SAID & DONE EXTRACT, PART 1