“MY name’s John Hanley, I’m 51 and I’ve got motor neurone disease …” was the matter-of-fact way the Brisbane Catholic introduced his first original song to the world last month.
But, in his own words, he’s not about to let the disease define him, and singing is one of the ways he’s making sure of that.
In introducing his song, called Home, on YouTube, John explains that motor neurone disease (MND) is a terminal illness with an average life expectancy of about 27 months from diagnosis.
“I’m pretty fortunate; I’m a few years in now,” he said.
“But one of the things it’s going to rob you of in the end is my ability to talk, swallow and lots of other things but at the moment my talking voice is a bit raspy, but I can still sing.”
John’s making the best of that voice with the recording and video clip he’s produced with friends in support of the Brisbane-based MND and Me Foundation.
It’s not the first time he’s gone public with his singing.
Only last year, he was seen by a national audience on the first episode of the ABC TV series, The Recording Studio, where people from all walks of life had the chance to record a track with a group of music industry professionals and then perform the finished product.
John chose to sing Van Morrison’s classic Brown Eyed Girl for his own “brown-eyed girl” Lisa, his wife of 30 years.
John said he just loved singing.
“Yeah, and never been able to shut me up, if you ask my wife …,” he said, from his home at Albany Creek, where they live with their sons Jackson, 23, and Maclean, 21.
“It’s always been a big part of who I am – always got music on in the house, and always singing songs of any type, all sorts of genres, even classical stuff, rock’n’roll stuff, ballads, hymns, the theme tunes, lots of things.
“My voice is hanging in there, which is good.”
That was one reason why John wanted to record Brown Eyed Girl for Lisa while he still could.
And it’s the same with Home.
“It (recording Home) started out as wanting to just have something here, another song that I’ve recorded apart from the one that we did on The Recording Studio, but just another original song and another little memento to leave behind, I guess, when my time comes,” John said.
One of his friends Martin (Marty) Gibbons, who’s director of music video company Digital Black, asked John to make the recording for the MND and Me Foundation and he agreed.
“I made it clear to Marty at the very start; I said, ‘I don’t want to talk specifically about MND’, but there’s lots of things that people with MND will be able to instantly recognise (in the song) and be familiar with but I wanted it to be also about other struggles that people may go through, whether it’s any other sort of illness or mental health issues or anything like that,” John said.
Home and John’s voice deliver with plenty of heart and soul.
Since about 12 years ago, John’s been honing his voice with the parish choir at All Saints’, Albany Creek, and in more recent years with the mass community success Pub Choir.
Lisa and John, now in his wheelchair, go each month to Pub Choir, even following to different venues at places like the Sunshine Coast, Toowoomba and Warwick.
They were in the front row recently when Paul Kelly led a packed house at The Tivoli in singing one of his new songs.
“When I talk to my neurologist about my speaking voice – a lot of MND people, they lose the ability to form words and their speaking becomes slow and slurred but mine, I slur a little bit every now and then, particularly when I’m tired, but my talking voice is just getting raspy and it’s basically from the muscles around the windpipe getting a little bit ‘sloppy’ – the official term – but, because you’re singing from the diaphram, I don’t have any problem singing still, which is very fortunate,” John said.
He was diagnosed with MND in June 2016 but he said symptoms had first started appearing in mid- to late 2012.
MND is the name used to describe a group of diseases in which the nerve cells (neurones) in the brain and spinal cord that control the way we walk, talk, eat, swallow and breathe progressively die.
John said before he was diagnosed he had started to notice “little things that were a little odd, like balance was the main thing – just little cognitive things were happening”.
“That’s what ended up forcing my hand to go and see my GP and it all started from there, and it took about three-and-a-half years for them to finally land on MND,” he said.
“There’s no one test, no singular blood test or anything to confirm MND.
“It’s a process of eliminating all the other things that it could possibly be before they land on that.
“But, then by the time they got closer to a diagnosis of what I had, I had a lot of the real tell-tale symptoms like muscle-twitching, and a little bit of muscle-wasting happening in my legs …
“The average life expectancy is about 27 months, so I’ve well and truly gone past that.
“About 90 per cent of sufferers end up passing away between the third and fifth year, so I’m now just coming up to four years, which is good.
“I’m pretty fortunate in that I seem to have one of the slow-progressing types.
“There’s a few different types of MND but everyone’s very different; some lose their life very quickly and some hang around for a long time.
“Hopefully I’m one of the latter ones.”
John’s in no doubt of what’s important in life.
“It’s a shame that, when people are faced with these life-changing illnesses and that sort of thing, that it takes these sort of things to make you realise every day you should be treating as a gift, and no one’s assured of a tomorrow so you should be just making the best of everything you’ve got,” he said.
“I’m a big believer if you’ve got air in your lungs you should be using it, so that’s what I do.
“That’s why I keep singing, and I spend as much time with my family and friends as I can.
“I’ve got a very good friend who we spend every Wednesday together, and we do various things.
“Just yesterday we took a drive up to Maleny and Montville and up that way, and it’s just spending time together.
“Sometimes we talk absolute rubbish and sometimes we talk something a little more deep, but most of the time it’s just spending time.
“If the boys, my sons, are out playing, whatever they’re doing, whether it’s their football games or if they’re doing something musically, I try to spend as much time with them, and obviously it’s Lisa and I getting out making as many memories as we can while I still can, because the time will come when I’m not going to be able to get out as much.
“So, you’ve just got to live each day like tomorrow you’re not going to be able to do quite as much.”
Before his diagnosis John had worked for more than 20 years in sales and marketing roles in the wine industry but had to give up work in 2014 when he could no longer drive a car.
“I had to sort of make the decision to stop worrying about the little things in life,” he said.
“Certainly I have my dark days when you’re down on the world but I snap myself out of it very quickly because I always look around and there’s people a lot worse off than what I am.
“I don’t go through any nasty treatments like chemotherapy or radiation or having to take terrible drugs every day to try and control or to battle this.
“I accepted that I’m not gonna win this battle so I’m not gonna get down about it.
“It’s something that’s happened; it’s nobody’s fault; it’s just something that happens.
“But I can either get down on the world and be cranky about it or I can just get on with life and keep living while I’m still here and, fortunately, I think my attitude, and certainly my singing, has helped me to be able to deal with that, because the more I exercise my voice I think the longer my voice is going to hang in there.”
Unwavering faith helps, and John feels God is with him – “particularly in the last six or seven years”.
“I really think there is a big master plan for all of us and whatever that is you’ve just got to roll with the punches, and if this is what He had planned for me, then who am I to question it?” he said.
“There’s obviously people out there who don’t have any sort of faith at all and you do feel sort of – not sorry for them – but it’s hard to understand.
“It just makes you appreciate what you’ve got even that little bit more.”
He said he felt supported by God to just “keep doing what I’m doing … keep spending quality time with those really close to me …”
“I really think He’s telling me to keep singing,” he laughed.
“He’s saying, ‘I’ll let you keep your voice as long as you keep singing’.
“That’s a very superficial sort of way of thinking about it but, to me, that’s what it is …
“I get along to … an MND support group meeting every couple of months, which is organised through the MND and Me Foundation, and I just love going there and talking to the newly diagnosed patients who might be really struggling with it.
“I just love being able to be there for them and answer questions and show them a little bit of the positive attitude and hopefully it rubs off because I’ve seen some who really get down in the dumps really quickly, which is quite understandable.
“I’m blessed in the fact that I don’t. That’s how I see it.
“I see it as a real blessing that I don’t let this define who I am and make me shout at the world or be cranky at the world.”
John will continue to support the work of the MND and Me Foundation, and raise awareness about the disease.
“It sounds very odd but I love talking about MND because it means that more people are talking about it, means more people are then talking to other people about it and through that that’s where awareness comes and hopefully it gets the research momentum really happening,” he said.
The MND and Me Foundation provides practical support for people with MND and for their families, and funds research into the disease.
At the end of his “Home” video, John asks that people who view it also share it “because what we want to do is get it out there and raise a little bit of awareness, but we’d also like to raise funds to continue the research and hopefully find a cure for this monster”.
To hear John’s song, Home, go to: https://www.youtube.com/watch?v=9YWWVQjXR4o
