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Fridays with Phil

Life, family and unshakeable faith

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ALS

On the Couch – Unpacking our journey with MND / ALS

Recently Lenore and I were interviewed “On the Couch” in a heart-to-heart chat about our journey with terminal illness, how we reconcile our journey with our faith, and how we hope our story can help others.

This is a link to the interview at Riviera Christian Centre here:

Here is a full list of questions we answered about our journey of hope with MND / ALS:
  1. Was Shannon (our son-in-law) what we expected for our (eldest) daughter?
  2. Explain what MND is?
  3. So you’ve outlived the prognosis?
  4. How did you process the first time you were given the diagnosis?
  5. At the point of diagnosis, did it change what you believed about God?
  6. How do you keep caring and loving in this journey?
  7. Is there a point when you don’t want to deal with it anymore?
  8. What do you do when fear tries to creep in?
  9. What about the contradiction of living with a God who heals but who hasn’t yet?
  10. What do you do to look after yourself?

 

Please feel free to share this with anyone who you think it could help!

Phil

Why a property guru climbed Mt Everest and what it can teach us today

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I have had the privilege of becoming friends with Leah Jay in recent years, who is not only a prominent business woman, but who also lost her son Elliot (pictured below) to Motor Neurone Disease / ALS when he was just 19 years old.

Elliot Jay was a talented basketball player and bright University of Newcastle student.

At first, Elliot began to fall over, as his legs would collapse from under him and he struggled to walk up small stairs.  One day when his Dad dropped him off at work, he limped to the stairs, stopped at the base of them for a few moments, then turned, struggled back, eyes filling with tears, removed his tie and said “take me home.”

He was never to return.

In his first semester of university, his friend would joke around with him, because he would take the elevator for only a small flight of stairs.

He was walking with his mate down a popular street lined with cafes when he fell over. Onlookers thought he was drunk.  With the help of his friend and a stranger, he got back up.

Little did they know this weakening of his left calf was the beginning of the Jay family’s tragedy.

Diagnosed in 2007 at just 18 years of age, by January of 2008, Elliot had lost the use of his arms, legs and neck.  He died in April 2008, after a 12 month battle.

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In honour of her son, nine years after her his death, at 4:40am on 22nd May 2017, Leah Jay reached the highest point in the world.

She successfully climbed Mount Everest, becoming one of less than a dozen Australian women to successfully do so.

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Her goal is to climb the seven highest mountains on each of the seven continents in honour of Elliot. This was her sixth and Denali in Alaska will be her last.

 

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There is so much I never knew about the feat that is Everest.

For example, did you know, there is only a window of two weeks per year that you can climb it?

First you have to trek the Himalayas for 10 to 12 days before you even get to base camp, at an altitude of 5, 300m. Yellow tents are home for six (yes, six!) weeks.

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Things I learnt about climbing Everest from Leah’s Pursuit:

  • You climb Everest by completing three multiple rotations going up and down (back and forwards) while your body acclimatises and develops red blood cells.
  • If you could get dropped off on the top of Everest by helicopter, you would die within 10 to 15 minutes. This is why you have to do the rotations.
  • From camp 2 to camp 3 is only 2,000 feet, but it takes 7 hours of treacherous climbing an ice face.
  • Anytime your body is above base camp you can feel it wasting and become weaker.
  • As you climb, you spend about 20,000 -30,000 calories per day.
  • You climb at night, leaving at about 1am.
  • There are 30 ladders, held by ropes, between base camp and camp two.
  • Remember, you do it three times before the summit.
  • It takes six weeks to climb Everest.

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Leah wrote in her journal last year while on Everest, “I’m not super human, I’m just a girl from Newcastle. But I chose to be here.”

She said, you can’t practice the fear you will feel climbing and navigating the ladders.

With so much you can’t control, you just have to keep going and remember the pain is temporary, she said.

She was literally in the death zone.  She slept with two dead bodies outside her tent.  That’s when you start questioning your own ability and reason for being there, Leah said.

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I have learnt so much from Leah’s pursuit.

Leah didn’t just wake up one morning and go and climb the biggest mountain she could find.  She began with high tracks, then small mountains and then Everest.  Once she decided to climb Everest, she lived and breathed it.  Her whole focus was on fitness, diet, sleep, equipment and training.

I believe there is much we can take from Leah when it comes to how we live in the pursuits of our own lives.

Things I learnt about leadership from Leah’s pursuit:

  • There’s no escaping the importance of setting goals.  Those goals need to have incremental victories attached to them.  Leah had a strategic plan in place to conquer Everest.  In fact, she climbed many smaller mountains before Everest, giving her both confidence and credibility.
  • Leah knew she needed a team around her before, during, and after the climb that could make her better than she was on her own.  Her climb was only made possible by the commitment of others in her team.
  • Leah showed commitment and dedication to the team by her personal discipline to her own preparation.  She prepared her mind, body and soul.
  • Leah, to achieve what she needed to achieve, narrowed her focus.  She lived and breathed Everest.  Her eating, sleeping ,and exercise was totally focused towards the climb.  Every activity was attached to the purpose of the climb.
    Activity without a purpose is like a boat with a roaring motor but no rudder for direction. 
    Why not remove the activity in your life that is not producing or moving you towards your purpose and passion?
  • Leah was not just about being prepared, but it became her passion. When Leah shares her passion, her goal and the reason behind why she is doing what she is doing, people rally around that.  People want to attach themselves to things that matter and have meaning.
  • Remember the rotations that Leah did I outlined above?  They involved her climbing for seven hours, returning to base, and climbing another seven hours, then seven more, then again, returning all the way back down to base camp.  This is a test of how your body and mind adjust to the higher levels of altitude.  As her body adjusted, she went a little further.  Leaders note, don’t try too much too early.  Prove yourself in the small things and then you will be ready for the bigger challenges ahead.

Leah will pursue Denali, her final mountain, before returning to Newcastle for the Big Freeze, seeing locals slide into ice water, raising much needed funds for a cure for MND.

For those who want more info on this year’s Big Freeze on June 23rd 2018, you can visit www.newcastlefreeze.com – a worthy cause, I am passionate about and proud to support.

I’ve said it before and I’ll say it again, for all those who are fighting or who have lost anyone to MND, you are not alone.  There is an army of friends, family and a community who are behind you to conquer this beast, this mountain, of a disease.  And like any great endeavour, it will be one step at a time. 

Have a blessed day,
Phil

(And sincere thanks to Leah Jay for allowing us to share her amazing images of Everest and of her beloved son, Elliot.)

Primary Colours

Here we are, the first Friday of February and my first blog of 2016.

I hope for you, the canvas of this year is beginning to fill with the colours of new things, plans realised, and dreams for the future.

Maybe you haven’t given it much thought and one year has seamlessly drifted into another. Or maybe, already this year you are feeling discouraged, even lacklustre, about what is to come.

Whichever filter you are looking out from, I would encourage you to see the unrealised months ahead as a blank canvas beckoning a masterpiece.

It was 26 years ago in London when I first began appreciating art.

With some free time on my hands, I visited the London Art Gallery. I was astonished by the beauty of the pieces and the way the artists could capture, not only the light, but also a precise moment and emotion.

About a year later, I was sitting in a teahouse in Morocco and saw a painting by Mohamed Toumi. I didn’t hesitate. After a lengthy negotiation, I left that day the proud owner of the piece I had admired (pictured above).

I love the way Toumi uses the primary colours of yellow, blue and red.

It makes me think, what primary colours will frame your year?

The bible talks about three elements that should permeate the life of a Christian: faith, hope and love.

Faith is our trust and confidence in God. It is a trust that brings victory in the midst of defeat. A trust that says, I may not understand but I lean on you God, I believe in you, I rely on you.

Hope is knowing that tomorrow is always better when heaven and eternity are a reality. It’s a hope that says, while the clouds may come and go, my hope is secure in a positive expectation that there is a better future beyond what I can see in my present day.

Love, rightly considered “the greatest of these”, is both unconditional and eternal. It is first received deep into our soul, but also finds expression through the way we live for others. Love is best revealed in the selfless sacrifice of Jesus on the cross so that we could live. Greater love has no man.

I wonder what shape this year would take if we offered up our faith, hope and love and placed it on the palette of the master artist.

Knowing God, He is well able to take what you give him and produce in your life something others would look at and marvel.  And not only marvel at, but would cause them to consider what their own life could look like with more of what you have: faith, hope and love.

I am at this moment taking drugs to try and help slow the advancement of a terminal illness, MND/ALS.  These drugs may or may not work. I hope they do. But, here is the thing, if they don’t, I will not lose my hope. Why? Because my ultimate and greater hope is in an assurance that heaven is a reality.  If I look up, hope will never die.  My hope is an anchor that all is well with my soul.

I can’t help but consider eternity when I consider life.  To think that one day, we won’t need faith or hope, but we will fully comprehend love. Not love as a feeling, an emotion, or commitment but love as a Noun, as a Name, as a Person. Love that is God Himself, love that is filled with light and life. Love that is Jesus.

On this side, we may look at the splashes of colour, the strokes that don’t make sense, the messiness of it all and not comprehend where the painter is headed or what on earth is taking shape. Indeed, if I look at Toumi’s painting, it was a mess before it was a masterpiece. Only when it is finished, we see the purpose of the individual strokes.

It encourages me to consider that we are God’s workmanship (Ephesians 2:10). The very wonder of life is that we are God’s masterpiece in the making.

We may question what God is doing but we must trust the Master’s strokes. The way He uses our faith, hope and love in our lives. The way He mixes those elements through our life and enhances other shades of beauty.

I pray this thought would cause others to stop and wonder and that it would inspire you to live life more fully and alive.

Phil

A decision not taken lightly

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,
Phil

When you don’t know what to say

Do you struggle with what to say to someone when you know they have a terminal disease, a disability, a mental illness or even when they are facing a seemingly insurmountable challenge?

As someone living with Motor Neurone Disease, I find myself on both sides of the conversation, receiving comfort and offering it, so maybe I can help.

I think a good rule of thumb is to stick to conversation, questions and condolences that match your level of relationship with the person.

Just because someone is going through something doesn’t automatically give us license to extend beyond the level of our current relationship with them.

As a casual friend or acquaintance, I ask people, how they are going “today”?  It means they don’t have to answer what can be an impossible question: “how are you going?”  Unless that person has been cured, they probably don’t want to relive everything that they are currently facing in what they are going through. The word “today” allows them to remain focused on the present.

For those I am closer with, I may ask, how they are “feeling”? This moves a conversation beyond the factual realities of the situation and towards how they are coping, emotionally, spiritually, or mentally with what they are going through. Their answer could be about how they are feeling about the future or the courage they need to face each day’s challenges.  It may be as detailed as treatment plans and the potential side effects of trial drugs.

So for your sake, for their sake, only ask if you really want to know. 

It’s shocking some of the things people come out with when they don’t know what to say. I’ve had people invite me to go into a closet with them to pray and not come out until I am healed. Some have asked me if I am really that sick as I look so good. Others have suggested that a forty-day fast with lemon and water will cure me.

All well meaning I’m sure, but there are better things we can say and they are often the simplest things: How are you going today? How are you feeling? How can I help? I’m praying for you, I’m sorry, you are inspiring, we love you, we are proud of you.

These words acknowledge the seriousness of what they are going through and yet still inspire hope for the future.

If you get a response like “I’m doing great” or “this is a great day”, it is not necessarily a contradiction to the challenge they have, it could just be a reflection of them trying to have the best day possible and not dwell on their less-than-perfect situation.

It is always good to consider that a person travelling through a tough time is most likely digging deep to find the strength to be positive. You never know, they could just be on the brink of taking a leap of faith. Their breakthrough could be just around the corner.

Your words could make all the difference.

Phil

The victorious life

We all want victory.  I don’t know anyone who is happy about losing or being defeated.

However, the truth is that if we are living at all, we will have experienced times of loss and defeat.  Does that mean we are not victorious?

I believe that although we may have times of defeat, we can still have a victorious life where the rhythm of our life is victorious and where the theme or banner over our life is victory.

We can live in such a way that our heart is not discouraged from a single defeat, but is courageous knowing victory is measured over a lifetime, not over one day.

Michael Clarke has retired as Australian cricket captain at the end of one of Australia’s biggest Ashes losses.  Yet Michael should be remembered as a great cricket captain, for his triple century in 2012, his 161 with a fractured shoulder, his century after the death of Hughes. He is not to be remembered for a single loss, but for many victories.

How do we keep our heart victorious in the face of defeat?

Here are some keys:

1. Remember the wins of the past.  

Think about what God has accomplished in and through your life to date.  Psalm 103:2 says it like this, “Bless the LORD, O my soul, and forget not all his benefits.”

One of the traps of time is that the further we get away from the work we saw God do, the more we are tempted to make it not such a big deal or even worse give ourselves the credit, rather than God’s provision and divine help.

It is important that we remember what God has done for us if we are going to walk in continued victory.

2.  Win the private battles.

To have victory in public, we need to win some battles in our own soul and spirit. This is the hardest battlefield at time because it takes more courage to change ourselves than to find fault in others.

Finding fault in others only superficially gives us a sense of victory. That’s why some people gossip because it’s easier than having to look at themselves and see areas that need changing.

Maybe, it’s time to look for any rubbish that needs removing and “take out the trash.” Maybe it’s time to get off the gossip train!

3.  Let God in.

Many people have a concept that God is looking for an opportunity to punish them. Nothing could be further from the truth.  God is in fact actively looking for opportunities to show Himself strong in you and through you.  When we are ready to win battles in our own lives, then God is ready and willing to help.

Be encouraged today, you can win in the end. Victory can be your hallmark even in the face of loss and defeat.

Phil

I need help

When I was 13 years old my mum and dad separated, leaving my sister and I living with my mum in a tiny apartment. Each Friday I negotiated between mum and dad a weekly support sum given by dad to mum to help raise us. I hated it.

I clearly remember sitting with mum on one side of Epping train station in Sydney while dad sat on the other.  I would walk across the footbridge between them, back and forwards, communicating the terms of how much money mum would get for the week ahead.

At the age of 13, it seemed like dad was only providing for us, not out of love, but because of an unwilling obligation forced on him by mum. And I was mad at my mum that she couldn’t speak for herself and put me in the middle of them.

It’s only after decades have passed that I can see that I had drawn childish conclusions about both my mum and dad at that time. Those conclusions influenced reactions in my life, not only a fear during the early years of my marriage that Lenore would leave me suddenly, but also a difficulty in accepting help from others.

I grew up struggling to believe that when people did help it was out of love, not obligation.

I wonder what childish conclusions you may be living with to this day?

Today as a 55 year old who needs to rely more and more on the help of others, I now realise it was unfair of me to assume ill motives on others. There are people who are neither unwilling or under obligation that want to help and do help. I was the one with the issue.

Maybe like me, you need to acknowledge your own false conclusions.

What I now know is that my dad did love me and my mum was not using me. They had stuff going on in their lives that had nothing to do with me. My dad’s tough negotiating, for example, had more to do with his need for money to feed his addictions and pay his bills, not to mention his anger over mum leaving.

What about you? What childish conclusions about life and relationships are you living with?

Have false conclusions in your life stemmed from disappointments, from past experiences, or just incorrectly processing information?

Are you like me, reacting or responding to people and their actions from a dysfunctional mindset built upon false understandings and conclusions that have framed the way you now think?

You see, not only as adults do we need to put aside childish behaviours, but it may also be time to put away seeing life how a child sees life – recognising, there may be more to every story.

There is so much potential for our lives as we mature, not only in age, but in actions, and in how we perceive the world. I leave you with this verse today, 1 Corinthians 13:11:

When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put childish ways behind me.”

Phil

P.S. If you want to help me end MND / ALS, visit www.curemnd.org.au

Choices that hurt

We all make choices. Some of our choices both help and hurt at the same time. They are beneficial but uncomfortable. They are right but they go against the grain.

When you have a debilitating illness, there are certain medications that are prescribed which alleviate pain and the body’s response to illness but at the same time take their toll in other areas.

To help me manage the effects of Motor Neurone Disease (muscle fasciculate, cramps, shakes), my neurologist has given me medication. Unfortunately the drugs come with warnings of blurred vision, dizziness, drowsiness, high blood pressure, weight gain etc. You get the picture.

It’s the dilemma of many people in our world who neither choose the illness, nor choose the effects the drugs may have.  But in the end we make a decision, it’s the lesser of these evils.

I wonder, how do you make the right choices in life? Choices like:

What medication do I take, if any?
Will I marry this person?
What degree do I study?
Should we start a family?
Should we buy a house?
Do I spend $200k on a trial drug?
Do I want quality of life or extended life?

Here is how I try to make the right choice.

Don’t let happiness be your guide, let peace.  When you have peace, joy is around the corner and joy is a necessary ingredient for lasting happiness and satisfaction. As one person put it, “Being sick well means living with joy despite the illness.

Seek counsel from experts in their field and wise people.  Remember sometimes those with knowledge aren’t the ones who have wisdom.  Wisdom is knowing how to use knowledge. Give time to thoughtful contemplation, this is different to just accumulation of facts.  Value other people’s opinions but remember they may have different values and life goals to you.

Consider this: what will be the impact on others? Try, to the best of your ability, to play out the consequences and see if it ends with increased experiences of love for you and the ones closest to you. Don’t base your decisions on what YOU want but on what is needed.

Allow your heart to get involved and search for what is instinctively true and right.  I’m not talking about what feels good to the senses but what has a deep and pervading “I know” attached to it.  It reaches to the personal integrity of what you believe is morally and ethically right.

For me, the Bible has given me some moral and ethical absolutes and prayer helps me practice those by God’s grace.  Sometimes the absolutes outweigh the popular and the majority.

Your decision to have life may mean certain things you now live with must die: bad habits, unhealthy relationships, negative thought patterns. In this way, sometimes life is found in death.  Don’t let pride or fear stop you from changing a wrong choice or making a right one.

Making the right choice, even those that hurt, is a balance between heart and head. I would encourage you to trust yourself and know yourself, don’t fear what others may think. Sometimes the right decision costs us something personally.

Remember this, right decisions take courage no matter what the outcome may be.

My hope for you today is that you choose the best life possible.

Phil

I believe we can Freeze MND!

With my family, looking forward to the Big Freeze!
With my family, looking forward to the Big Freeze!

Like me, Neale Daniher has Motor Neurone Disease (MND), also known as Amyotrophic Lateral Sclerosis (ALS).

This weekend, Neale is spearheading a campaign to raise money for a cure.  On Monday June 8th, several well-known footy personalities will be dunked in a giant pool of ice before a blockbuster Collingwood FC vs Melbourne FC game at the Melbourne Cricket Ground.

MND in Australia alone kills 2-3 people each day and they are replaced daily with others being diagnosed.

Neale calls it the BEAST.  My neurologist, Professor Dominic Rowe, a leader in research for a cure at Macquarie University, calls it the BASTARD.  Doctors, in university exit surveys, are known for voting MND the disease they would LEAST like to get.

MND kills most of those with it within 27 months of diagnosis. Death comes by the muscles wasting away until the person can no longer walk, talk, eat, or move any part of their body but the eyes, and then eventually, they can’t breath.

There is a cure, we just haven’t found it yet!

Personally I’m believing a cure will be found in the not-too-distant future.  I think we can turn Motor Neurone Disease around.

Why is a cure so important?

I believe a cure is the best way we can honour those who have died of the disease before us.  They courageously and valiantly faced their death.  All those who have died from MND have somehow contributed to the cure of the future.  Their death has motivated many to desperately and tirelessly work to find a cure today.

I think of those who can now give testimony of having been cured from cancer and at the same time, I think of those who, because of their death, are the reason we can celebrate that cure today.

Another reason I believe a cure is so important is that it aligns itself with the heart of God for humanity, a good God who desires for us to live life abundantly.  Whenever anybody works to protect, provide and promote life, they work in line with the will and purpose of God for humanity.

I am throwing my full support behind Neale and his team to help raise as much awareness and funds as possible.  If you would like to find out more or lend your support, you can visit www.freezemnd.com.

Phil

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