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Fridays with Phil

Life, family and unshakeable faith

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MND

What I shared at “Belong Women’s Event”. Strength in times of weakness.

MND/ALS Awareness Week. Meet Chris and Louise Fanning.

Lenore and I visit friends who are also living with MND/ALS. Watch the end we have some fun.

 

I know where I’m going. Coming out of iso from Covid-19

I would rather move slowly in the right direction then fast in the wrong.

 

Living life with no regret!

 

 

Link to my YouTube Chanel. Why not check out this video and subscribe to my channel.

 

The last few weeks we have looked at fear, death, grief, lose and now regret.

These are circumstances and emotions we see as being negative and destroying but I have found we can take the negatives the destroying and turn them into positive ways of building our lives full of purpose and forward movement.

“I don’t have any regrets”! Have you ever had anyone say that to you?

Or ask you; “have you got any regrets”?

I have. It’s a common question that people with a terminal illness are asked. “Any regrets”?

“No regrets”, sounds so confident even courageous.

Psalms 107:10 some of us once sat in darkness living in dark shadows of death. We were prisoners to our pain and chained to our regrets.

Doesn’t say we wont have pain or regret its we don’t have to be a prisoner to them or chained by them.

It’s such an important issue as regret can drive us into depression, shame, bondage, into a life filled with being captive to the past and chained to yesterdays mistakes.

Today I want to show you how you can live a life of no regrets.

How to break the chain of regret!

To take regret and make it a positive experience a real change agent for the better that can lead to:

REDIRECTION,

REGROUPING,

REFINING,

REGAINING,

RESETING,

REFOCUSING,

REPLACING,

REENGAGING,

RECOVERING,

REFRAMING

RELEASING,

REDEMPTION,

RECONNECTION.

RESTORATION,

REBUILDING,

However, I am beginning to realize that if I never had a regret I’d never have changed.

If I never had a regret I’d never grow.

If I had never had a regret I’d never have admitted fault or sin.

In fact I think the only way to live with no regret is to admit and face up to your regrets.

REGRET can help us make sense of the present, avoid future negative behaviour, and motivate us to make the best of opportunities now given.

If you live without ever having regret then you have missed the opportunity to courageously learn and change for the better.

I remember as a young boy stealing a lead pencil from the local Woolworth store. I needed a 2HB pencil and for some reason that I can’t remember I thought the only way was to steal it. When I went home that night with my prize I could hardly sleep I was so ashamed that I had stolen the pencil, I regretted it. Regret for what I had done made me sneak the pencil back into the store the next morning. I can clearly see myself returning the pencil to its shelf.

I knew I wasn’t a thief by nature but I had stolen.

If I had not acknowledged regret then shame would have said I was a thief but by responding I allowed regret to acknowledge my guilt and I changed the direction of my life.

I acknowledged I had done wrong and regret turned into repent. I asked God to forgive me and I responded to His forgiveness by changing my ways.

So my answer in this situation is I had regret but now I have no regret because I have learned from it and not ignored it.

When we do not respond to regret in a positive and constructive way, regret will morph into shame.

Remember shame will try to define you as being a thief while regret will acknowledge you stole and redefine you as you respond to your regret.

Regret is a powerful motivator for change. It will not just change the situation from bad to good but will redirect and reframe your future for the better.

I have learned so much from people who have admitted regret and acknowledged their regret.

I remember talking to a man who refused to have a PEG (a tube passed into a persons stomach to provide a means of feeding when oral intake is not adequate) put in his stomach as he had lost the ability through the effects of MND to eat and swallow.

He came to a place when he wanted to get it but was unable to as the anesthetist wouldn’t allow the operation. He told me he regretted not getting it when he was well enough. He would have lived longer.

I have learned from his admitting regret and have counselled others who have also come to the place of deciding wether to or not get a PEG early. if the time ever comes for me to get a PEG I will get it.

The more you learn from your and others regrets the less regrets you’ll have.

Maybe being vulnerable about our regrets can bring change in others so they don’t have the same regret.

I have no regrets because I have turned those regrets into a change agent.

I remember getting a credit card interest charge of over $100.

I regretted not paying my credit card off, missing the date and not paying it in full. Since then I have never paid interest on my credit card. I pay on time and never allow the card to go above what I can afford to pay off at the end of the month.

Regret changed the way I did my banking and made me get knowledge about how the interest is calculated on credit cards.

If you learn from your regrets then they are truly no longer regrets.

I can say I have no regret about being charged that interest as its’ saved me ever being charged again.

This is going to be a little controversial BUT telling someone who is dying how you feel about them and how much they have meant to you is not going to impact on wether or not they get well, cured or healed but it will insure you will live without regret.

Anything said to a person who is dying and then doesn’t die has only added depth, love and benefited the relationship for the future.

What about the things you regret but can’t go back and change?

If you get stuck blaming yourself and regretting past actions, this could turn into depression and shame . Find a way to forgive yourself and let it go. Most people have an easier time forgiving others than themselves.

There is no regret that can’t be turned into a life changing experience.

You may regret your life of sin allow it to led to repentance, ASK GOD TO FORGIVE YOU AND THEN FORGIVE YOURSELF.

Mark 1:15 And saying, The [appointed period of] time is fulfilled (completed), and the kingdom of God is at hand; repent (ahave a change of mind which issues in regret for past sins and in change of conduct for the better) and believe (trust in, rely on, and adhere to) the good news (the Gospel). Amplified Bible

I hope this helps you acknowledge your regrets so you dont have to live with REGRET.

PEACE AND LOVE.

MOVING FORWARD WITH LOSS AND GRIEF.

If we love then we will not make it through life without experiencing grief.

Strategies for dealing with grief.

       

In my last vlog I said:

Life’s beauty is inseparable from it fragility.

The greatest beauty is found in love.  

With love also comes great grief.

If we love then we will not make it through life without experiencing grief.

Living with arms and hearts that embrace life and love will also bring lose.

This loss can be in the form of the death of a loved one, 

Being made redundant from your work place, 

A diagnosis that threatens your life, 

A business transaction that has been lost,

Lose of business that you have given your life to.

A pandemic that separates, isolates and devastates your security and well being.

BUT WHAT if I could show you a way to processing grief and loss that will lead to a greater depth of joy, a new perspective ON life and new purpose FOR life. 

Some real keys to living with and through grief.

First: When we deal with our grief don’t look at it like its a spiralling downward as much as its a way we move forward through pain and challenge.  It’s what Philippians calls the “forgetting what is behind and straining forward”.  

Sometimes going forward means straining and grief is THAT.

JESUS lived for 33 years on this earth and he lived in a way that not one moment or experience he had was wasted or of no value to him or those who would know him.  

In the Garden of Gethsemane we see him grieving again, weeping over his coming death and wanting the comfort of his friends with him. 

In Matthew,: “My soul is sorrowful, even unto death; remain here and watch with me” (Matthew 26:38 ESV).

And, of course, lamenting to God is praying like Jesus did. Jesus prayed a psalm of lament on the cross, crying out “Father, why have you forsaken me?” (Matthew 27:46, Psalm 22:1 ESV).

Jesus grief was seen over the death of His friend Lazarus.

He loved and in His love for Jerusalem, for humanity, for you and I he experienced real grief.

His grief was not wasted neither is our grief.

You may not see any meaning that can be immediately attached to the grief you are going through but the way you go through your grief could in itself attach meaning to it.

This is a world full of brokenness, and grief reveals the truth about that brokenness. 

I think this is a topic again so needed right now more then ever.

It’s a subject that again is 

not negative but positive, 

not destructive but building, 

not disempowering but empowering, 

not weak but strong,

not fearful but courageous.

If we lean into grief the way we should we will bring meaning and purpose to what may seem such meaningless circumstances.

Yes I believe when we see no obvious reason for loss and grief we have the grace and ability to bring meaning to it.

Can I first begin by saying sadness and grief though similar are not the same.

If we think of sadness its not depression and its not grief.

Sadness unlike depression and grief is shorter more temporary emotion we have in lose or disappointment.

When we see that 958 people died in England we are sad but for the loved ones of those who died they will experience deep grief.

Our sadness may only last for a few days or until the next commercial or news report of another tragedy or triumph.

Their grief will stay with them  in some form or another for the rest of their lives.

When I was diagnosed with MND a terminal illness for those who loved me deeply it was a time of grief for others it was sad to hear about Phil.

And thats ok because none of us who love deeply will go through life without grief.

May I also say that grief can have many levels and layers too it.

If your mother was to die at the age of 98 from natural courses your grief will be real but for you to loss a child at a young age to cancer or some other illness or tragedy. May I suggest that grief would be a whole other level and depth so profound that it would impact your life story for ever.

Grief goes deeper, its life changing, its an experience that brings a changed life. 

There is a before and an after this happened when it comes to a life impacted by grief. 

Before this loss and after this loss!

For me it was I was healthy before i was not, with this MND.

I will continue to live, love and enjoy life but life will be different and so will I.

Even if I was healed today my life will never be the same as it was before the diagnosis.

Grief has the ability to make us more loving, patient, compassionate, accepting and gentle.

This will only happen if we face up to grief, truth up to it.

To do this with any sense of truth we have to know that with grief, 

its ok not to be ok, 

until you are ok, 

and you will be OK.

When I lost my sense of self worth and significance after being diagnosed with MND and as a result having to leave a job I not only deeply loved but that I had been called to.  

I loved being who I was and doing what I did so when I lost that ministry as i knew it then my grief was real and tangible.

Grief is not sinful.

It’s  a good and godly response to love and passion lost.

Sometimes we repress grief and try to move through it quickly, or even deny that it is there. 

We might fear that it is a sin to feel this way. 

If we believe it is sin, it follows that we should move away from this negative feeling quickly. 

We fear our grief may cause us to question the presence and work of God in our lives.

What I learned during this time is that it was not the end of me or my life but a continuance of it in ways i never imagined.

I would get up but I would be different.

It was going to be a straining, a stretching,  a reaching but not a breaking.

What i suggest you do in your time of grief is be honest with your feelings and emotions.

Either write them down like no one will read them, so there is no filter by what you should say or be expected to say.

Lament to God as though he is the only one who hears and he knows anyway so your not going to shock Him.

Confide in a wise friend, pastor, counsellor, therapist who you can trust with the truth about how your feeling.

Lamenting to God is a good and holy way to grieve.

Listen to a Lament in Psalm 102:1-2

“GOD, listen! Listen to my prayer, listen to the pain in my cries. Don’t turn your back on me just when I need you so desperately. Pay attention! This is a cry for help! And hurry—this can’t wait!”

 When you write or talk about your grief your showing up to it.

Life is lived when you move forward with your story not by separating yourself from it.  

We become integrated and whole able to move forward in healthy ways.

This week and indeed the months ahead will bring with it sadness for some and grief for others.  

If we are global christians we will not just see the blessing of living in Australia at this time but also feel the pain of what many others in our world are going through especially in 3rd world countries where the news seems to have no concern.

The way we move forward with these real emotions will determine the depth of love, joy and wonder that life is.  

Without grief we would never really fathom the profoundness of love.  

Grief is only possible because we have loved and love is ultimately measured by the depth of our grief.

Grief journeyed rightly, honestly and truthfully will bring new purpose, new direction, new perspective to life.

This new life wont come by ignoring the grief but facing it truthfully and fully until we are change for the better because of it.

So:

 Write it down

Lament and pray to God.

Talk to a friend

Confide in a councillor. 

Remember grief is a stretching, a straining but its a forward movement not a backward one. 

You will be transformed by the experience as you face your grief with grace and truth.

You will find new perspective, new purpose, new love for life and living.

Thanks for listening.  

If your on YouTube why not subscribe to my channel or

 go to my blog at fridayswithphil.com

God bless you all.

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

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