I have made my decision and it wasn’t one taken lightly.
It is with much thought, prayer, research, investigation and hope that I have decided to take a trip to Europe to have some tests and start a trial treatment that isn’t available here in Australia.
It’s not a cure, but it could slow down the progress of Motor Neurone Disease (MND, also knows as ALS) in my body. While I’m doing reasonably well, and have already outlived my initial prognosis, this is the time to act. It’s a “sooner rather than later” approach.
With ALS / MND, it’s not like you wake up one morning and suddenly you can’t do something. Instead, little by little, you lose your strength, some people faster than others. I’m the only one who really notices that decline day-by-day.
In the past 76 years, since the famous baseball player Lou Gehrig was diagnosed with this disease, there has only been one drug approved for ALS / MND patients: Rilutek. Rilutek was approved in the 1990s and is said to add 2 – 3 months of life to your prognosis. In some parts of the world this drug costs up to $4000.00 per month. In Australia, I pay only $37.50.
While I understand that there is more awareness, finances and scientists than any other time in history dedicated to finding a cure for this disease, I also understand that any new drug could take many more years to be released to the general community. In that sense, the money we are raising now is for the next generation of sufferers.
Some people have inferred that I should just relax and wait for God to heal me. My thinking is that when your daughter breaks her leg or your tooth needs filling, do you just pray or do you do what you can and leave the rest to God?
I’ve seen God miraculously heal people of cancer through divine intervention and I’ve seen God heal people through medical intervention. I’ve also seen people experience their healing through entering into eternity.
I have always seen God move in my life when I do my part and leave what I can’t do to Him.
Faith, trust, rest and hope are not couch potatoes, they are active and courageous as they approach the battle.
So for those who are praying, thank you, your prayers are effective and mean the world to me. Be encouraged, I am also doing what I can do to partner with your prayers.
My treatment in Europe will cost in the many thousands of dollars per year, but it has also been known to add 3 – 4 years to a patient’s life. Next week I go to Europe, hoping for the best, mainly because I want what you would want in my shoes:
I want more time with my wife.
I want to see my grandchildren go to school.
I want to be around long enough so they have some memory of me.
I want to hug my own children for as long as I can.
I want to be around to cheer them on in their lives and adventures.
I love this life.
I want to finish the race at the finish line, not mid-field.
And so, Fridays With Phil will take a short break. If you are interested in updates while I am away and post-treatment, you can follow me on Instagram (@pcamden) or Facebook.
I covet your prayers over this time,
Most of the time when I sit down and write this blog, I’m not totally sure where it will land. This week is no different as I sit in a cafe at Airlie Beach.
I’m here celebrating my mate Steve’s 60th birthday.
Mateship is a well-celebrated value in Australian culture. We are quick to call someone a “mate” – a taxi driver, a bank teller, or anyone whose name we have forgotten. But I wonder what a true mate looks like?
Steve is a true mate.
I met him 20 years ago when he was 40 and I was 36.
For all those years, most separated by distance, we have watched our kids survive their teenage years, we have talked about the highs and lows of business and personal life, we have attended one of our best buddy’s funerals, navigated some dark moments and celebrated each others triumphs.
So why do some friendships, like ours, last the test of time and distance, while others fade and fizzle out?
I’ve always lived by the philosophy that to have good friends, you need to be a good friend.
A true friend is first, friendly.
If a dog is a man’s best friend then it’s the loyal, predictable, friendly companion not the crazed, aggravated, vicious attack dog. If we are approachable, easy going, kind and agreeable, friendships will follow us. If our countenance is hard, stand-off-ish, or attacking then we will probably find it hard to make friends.
A true friend is second, true.
Truth, honesty and integrity is what to look for in friendship. A commitment to respect each other’s confidentiality when it comes to sharing deep personal struggles and realities creates an environment of trust.
Friendship can only flourish in an environment of trust.
When Steve and I first met, we started playing golf together. I would inevitably hit the ball into the trees and at times, to save my club from damage, I would have to move the ball (in golf, this is a shot). Steve wouldn’t see me move the ball so it would have been simple to hide it and not concede the shot. But, true friendship wouldn’t let me get away with not telling him. It’s a simple example, but friendship and trust are in the small things as well as the big.
A true friend is third, a listener.
Transparency in friendship includes not just what you say, but more importantly, how you listen. Listening reveals that you genuinely value the other person and you are interested in what they are going through.
To be honest, listening is one of the hardest of the communication skills to master. We are so quick to want to speak that it’s hard not to cut the other person off mid-sentence before we forget what is so important for us to say.
The practice of listening is a powerful friendship adhesive.
Finally, remember that a real friendship is not about what you can or can’t do for the other person, but who you are free to be.
Steve and I are no longer in the positions we were when we met, there have been significant changes in our public lives, but thankfully our friendship has never been about what we did but who we are. Any good friendship is.
That’s my two cents worth on being a good mate.
Most of my trips overseas have been to visit, and hopefully help, people who are suffering far worse conditions than those in my homeland of Australia.
The poverty I have seen in parts of the world like Kenya, Rwanda, Nigeria and DR Congo is extreme and can be crippling to families and communities.
To try and paint a picture of this poverty with statistics, according to the World Bank, the Gross National Income per capita in the DR Congo is $220 compared to $59,570 per capita in Australia.
However, in the midst of the massive challenge that is poverty, I have observed people who have chosen to have trust, hope, faith and love towards Jesus. This heart attitude sets their life on the path of looking for answers, not giving in to the trial.
What has always struck me is that even in their suffering, they seem to understand that circumstances are not always a good measure of God’s goodness.
God is still good.
They have taught me that, even when it is difficult to see or understand any reason, true love for Jesus is manifest in deep trust in times of trial.
God is still in control.
I believe the reason for this unique life-giving perspective is that they are courageously lifting the word of God and the name of Jesus above their circumstances. They are choosing to graciously respond and not react to daily struggles. They respond with the grace that God provides daily and daily respond to God’s grace!
If you’re facing your own challenges: sickness, addiction, relationship breakdown or whatever it may be, it is not just about whether you can believe God to fix that problem, but do you believe in the goodness, love and grace of God regardless of what you face?
The only way I know how to do this, while waiting for God’s provision, is to live with the presence of the Holy Spirit at work in my life. It is what causes me to say, “His grace is sufficient for me.” This is not by your own might, will, or power but by God’s Spirit, the great comforter.
God is still with you.
Psalm 136 says over and over again that “God’s mercy endures forever.” Some translations say “His love endures forever” or “His kindness endures forever”. The word “endures” tells us something: to endure implies that there will be tribulation, trial or persecution to overcome or to outlast. It also tells us that God’s love, mercy, and kindness never quits!
Have you ever wanted to quit? I’m sure you have, as I have at times, however strength is found in the fact that Jesus will never quit on you.
God is still for you.
Can I encourage you to do a heart check today – like my friends living in extreme poverty, is your heart open towards God, trusting his mercy, love and kindness, relying on and responding to Jesus’ grace that is all-sufficient?
Live in the slipstream of His grace today.