Diagnosis: Terminal

Phil Camden has Motor Neurone Disease – and robust hope for the future.



The meaning of suffering


Phil Camden has Motor Neurone Disease – and robust hope for the future.

“There’s a day coming where I’ll eat through a tube in my stomach, I won’t be able to hug my family. But I know God’s grace is sufficient for today, so I’m not going to pay interest on what’s going to happen tomorrow.”

Phil Camden has Motor Neurone Disease. He was given two years to live … four years ago. In this interview he explains to Simon Smart what his disease has given him that he would otherwise never have had, and what hope for the future looks like in the shadow of a terminal diagnosis.


SIMON SMART: Phil, thanks so much for coming in.

PHIL CAMDEN: Great to be here, Simon; thank you for having me.

SIMON SMART: Now, you were diagnosed with Motor Neurone Disease in 2013 – tell us, what even led you to go to the doctor to find that awful news out?

PHIL CAMDEN: Yeah, well, I used to run and swim and I was finding myself getting slower – unable to swim as far or run as far, and certainly stairs were getting a lot more difficult. So, at first, I thought it was a pinched nerve so I went to a chiropractor and they worked on my skeleton, and then they couldn’t do anything. I went to a physio for three months to wore on my core, but that wasn’t working, and the physio was actually the one that said, “You need to get your GP to have a look at this.” And he sent me to a neurologist, and after some very painful tests, gave me the diagnosis.

SIMON SMART: It’s a shocking diagnosis to get – what was it like at that moment when you were told this awful news?

PHIL CAMDEN: Yeah, it is terrible news, because it’s such a terrible disease. They tell you that you’ve got two years to live, and they’ve got to give you a worst-case scenario, because if they said you’ve got four and you die in two you’re going to be pretty upset with them. But if they tell you two and you live for four, you’re not so upset. But 80% die within 27 months, and the process of your death is like being locked inside a body that can’t move. So, you’re mentally stimulated, you’re mentally focused, but your whole body just shuts down until no muscle in your body can move at all, and once the lungs can’t move, you suffocate and die.

SIMON SMART: What was it like as you started to try to process that news, for you but also for your family?

PHIL CAMDEN: Yeah, really difficult, because terminal illness comes with a lot of ramifications. I had to hand over my job – I was the pastor of a church – I handed that over. So, within three months, I’d lost every position – everything that gave me a sense of self-worth and significance as a man. I’d lost my job, ability to earn income, I was on state executive heads of churches, and all of that was gone, and I was sitting at home, alone. And my wife as well, because she worked alongside me, so when I resigned she also went through that as well. So, we had to find a new sense of purpose and self-worth, I guess.

SIMON SMART: Well you’d been a pastor for a long time, so no doubt you’ve had to counsel and care for people in pretty dire situations – what was it like to find yourself in that place?

PHIL CAMDEN: Yeah, it was a huge learning curve, cause you’re the one going around and encouraging people and praying with people and helping people through some of the darkest moments of their life to the point of death, praying with people before they die and counselling and sitting with families, and now you’re in that situation. And I really had to be reminded of some of the things that I’d said to others and really, do I believe what I’d said to others? Is that the truth that’s going to hold me steadfast in this moment? And I found that it was, and in terms of self-worth and significance, I had to find that again in love, and realise that what gives all of us a sense of self-worth and significance is not the car we drive, the house we live in, the titles we come under, but that somebody loves us and cares for us, and I found that in my faith.

SIMON SMART: I remember Christopher Hitchens writing about when he was diagnosed with his cancer, and he said it was like entering across a border into another country. You’ve explained it a little bit similarly, haven’t you?

PHIL CAMDEN: Yeah it is. When I received the letter of diagnosis and the prognosis being two years to live, I really sensed that that letter was a visa to go into the world of Motor Neurone Disease and help bring hope where there was hopelessness, light where there was darkness, and faith where there was fear, and really begin to build relationships with people I never would have met in my life unless I had been diagnosed with this. So, I guess it brought meaning and purpose back into my world as well.

SIMON SMART: You met some people and had some pretty profound experiences with people suffering from the same disease as you – tell me about one of those.

PHIL CAMDEN: There was a gentleman who had Motor Neurone Disease and we were in his lounge room, and I was sharing my faith with him and we were praying with him – little did I know two weeks later I’d be taking his funeral and sharing with his family. And yet the day after that, I get a phone call from a 30-year-old young man who has two toddler kids – two little boys and a wife – and he’s just been diagnosed with Motor Neurone Disease. So, there are some horrific stories out there of people doing it really tough through this disease, but I think if we can encourage one another in it and help one another through day by day.

SIMON SMART: What does it mean really Phil for you to have hope in this situation which as you’ve said, has only one way that it can go?

PHIL CAMDEN: Yeah, well, apart from a cure, and I don’t see that coming in my lifetime. But my hope is in heaven and eternity, I believe in the reality of heaven, so that I know that all of us are terminal to a certain point, none of us have a guarantee on tomorrow, so my hope is in heaven and eternity. And yet, I still realise there has to be a hope that helps us through the reality of every day that we are here, and that hope is in me working with Cure for MND in Victoria, raising finances and money to invest into scientists, doing research to find a cure, so that if one day someone’s sitting opposite a neurologist and they’re saying “You have Motor Neurone Disease” they can also hand them a script and say “Go home, take this, you’re going to be ok.” And that might not come in my lifetime, but it will come because of what we do in our lifetime. And we have to live generationally, and we have to realise that many of the cures that we have today for different diseases are founded on the sacrifice of others who have gone in the past.

SIMON SMART: Are you afraid of what lies ahead of you?

PHIL CAMDEN: Yeah, I’d be lying to you if I said I wasn’t in some way apprehensive about losing all of my muscles, not being able to shower myself, to roll over in bed, to breathe easily, to eat, to never taste a strawberry again or a steak again. That day is in my future. And unless something miraculous happens, there is a day coming where I’ll eat through a tube in my stomach and I won’t be able to hug you and say I love you to my family and my friends. And so, I’m really apprehensive about that. But I know his grace is sufficient for today, so I’m not going to pay interest on what’s going to happen tomorrow or worry about what’s going to happen tomorrow, because I know that in that moment I’ll have the strength and the grace that I need.

SIMON SMART: You’ve got an incredible perspective on this Phil; thanks for coming in.

PHIL CAMDEN: Thanks Simon for having me, I appreciate it.