Search

Fridays with Phil

Life, family and unshakeable faith

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

IMG_7874

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.

IMG_7876

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.

img_7849.jpg

img_7824.jpg

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.

 

IMG_7852

img_7840.jpg

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.

IMG_7825

img_78211-e1523531427226.jpg

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.

IMG_7833

IMG_7826

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.

img_7831.jpg

img_7851.jpg

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.)

Peak Performance

Photo of Wanaka, New Zealand by @rachstewart_nz

Have you ever thought about your peak performance?  When have you been, are you, or will you be at your peak?

The idea of a peak suggests that there is a tipping point towards your best and that either side of that point is less than the ultimate state of the peak.

Well, five years ago, I was told, I had reached my “peak.”  I was told, it would only get worse for me.  That each day I would find my body weaker as motor neurones die out and eventually there would be none left, and I would have no ability to move at all.

In some ways, the doctors were right, I have become weaker.  My body is a physical reminder that my “peak” is behind me, as each day I live I am left with less than the day before, closer to that final day.

I have lived each day aware and perhaps more “up close” to the inevitable decline towards death that surrounds me, in my own life and also living with the death of friends with this disease.

That’s physically speaking, but my experience in every other way, suggests otherwise.

Maybe you live aware of your own peak?  Whether it’s performance-based, health, relationship-wise, or even professionally?  Feeling like you’ve reached it and it’s only downhill from here. Or maybe, it’s a place you strive for but never quite attain?

Let this be an encouragement for you today, your peak need not be a point!  What do I mean by that?

While my body has become weaker, but in and of myself, I have become STRONGER.

Every day I live in the present and with the conviction that this is my BEST day, not my worst.

By facing my own death and the death of other’s, I have never been more aware of LIFE.

Acknowledging the possibility of death only ignites a fire to live.  Being present in darkness releases the light.  Just as light becomes brighter when it breaks into the darkness.

How is this possible?

From my own experience, there must be a source greater than the available resource of your own being.

If I’m to experience life in the presence of death, then I need a life flow that comes from the defeat of death.

If I’m to live in the light whilst surrounded by darkness, then I need a light source that has overcome darkness.

It is the infusion of life and light that fills your being, dispelling the fear of death and darkness.

This is truly living at your peak.

Our human nature with its delusions and left to its own devices, wants to preserve and protect us.  It can cause us to deny our own darkness.

In doing so, I think it has actually deprived us of a deeper awareness of life and the presence of light.

And in turn, it has given us a misguided view of our own personal peak.

You see your personal peak may be simply standing in the strength that comes from victory over death.  It may be awaiting your decision to step into the light.

If you are asking again, “but how is this possible?”  Let me put it this way.

What I am talking about is eternal, supernatural, and spiritual.  It’s the eternal, supernatural and spiritual life and light found in the person of Jesus Christ.

I believe that it is only possible to experience this when we are connected to the source, that is Jesus Christ, who overcame death, and created light, for you and me.

You see, at the very beginning of life itself, God spoke and declared “let there be light” and there was light (Genesis 1:3). But it didn’t end there, He kept fighting for us to experience light by defeating death.

Jesus put it this way “”I am the light of the world. If you follow me, you won’t have to walk in darkness, because you will have the light that leads to life (John 8:12 NLT).”  Jesus made it simple for us, we simply acknowledge the pain, the death and darkness in our lives, and invite Him to be the life and light.

And then, Russell Brand sums it up nicely, saying this in a recent Relevant Magazine feature (yes, that Russell Brand, ex-husband of Katy Perry):

“If Christ consciousness is not accessible to us, then what is the point of the story of Jesus, you know?” he asks rhetorically. “He’s just a sort of a scriptural rock star, just an icon. Unless Christ is right here, right now, in your heart, in your consciousness, then what is Christ?”

[“Russell Brand: Unless Christ is in your heart, then what is Christ?”, sited 5 Jan 18, https://relevantmagazine.com/culture/russell-brand-unless-christ-is-in-your-heart-then-what-is-christ/ ]

Perhaps, while we are still at the beginning of this new year, it would be a good time for us all to look at the reality of our own death and darkness and choose light and life. 

I believe your peak performance is within your reach today, it just may look more like light and life than you expected it to.

Phil

Detour to happiness

thumbnail_25150

New findings from the Robert Half survey of 2000 workers show that employees aged 35 – 54 are the least happy in the Australian workplace, closely followed by employees aged 18 – 34.

Workers over the age of 55 are the happiest employees. Robert Half found that not only are the over 55’s the happiest, but they are also the most fulfilled, less stressed and find their work more interesting than ever before. (www.roberthalf.com.au/press/australian-workers-are-happier-and-less-stressed-older-they-get-survey)

When I was diagnosed with MND/ALS, I was 54 years old.  According to this survey, I was about to enter the happiest, most fulfilling, less stressful and interesting time of my life.

I felt I had entered this so-called “happiest” place at age 51. I had found my groove and was really enjoying my life. I was realising and living my dreams, fulfilling my potential and operating in my God-given gift.

All of that changed upon receiving my diagnosis.

Within months, I had lost it all. Really within seconds, emotionally and physiologically, but it took months for the consequences to play out.

My dreams had been shattered into a million pieces, my stress was heading north, and I was feeling anything but happy or fulfilled.

Imagine yourself in my shoes, maybe you have been there yourself, where your whole life changes in a moment.

It’s been almost five years since my diagnosis and I’m not dead (hence another blog).  Yes, I still have MND/ALS, and yes, according to the experts, I’m going to die sooner, rather than later.

But my life only took a detour and I’ve discovered it was not a dead-end.

Today I’m happy, fulfilled, less stressed and I would go so far as to say, I am “living the dream.”

This is not because I’ve received a miracle or have been cured from my disease. Both of which I stay very much in hope for, not just for me, but also for others.

Nor am I suggesting that removal of your pain or my disease is the only answer to rediscovering what it means to be happy, fulfilled and less stressed.

Here is what I have learned on the detour that may help you if you’re struggling to find the road back to happiness and fulfilment.

1. FACE IT 

I’ve had to realise that this is my life.  I have this one life and it’s mine.

You can too easily go through life wishing for another life, you can fantasise that you’re someone else, and you can pretend all you want, but this only stops you from being you, being present and being alive.

You and I don’t get to do this life again, not ever!  Not this year, not this month, not this day, not this hour. You live it and it’s lived, behind you.

You are the owner and as owner you have freewill to decide what responses and attitudes you will have in this journey that is yours.

You’re the “ONE” in “everyONE who believes in Me will have eternal life.” (John 3:16)

You’re the “WHO” in “WHOever lives by believing in me will never die.” (John 11:25)

You’re the “I” in “the life I now live…I live by faith in the Son of God.” (Galatians 2:20)

So own it. Face it.

A man came up to me just the other day and said “you are a realist”.  I guess I am, to a degree. I face up to the reality as a first step to bringing change for the better.  With my terminal diagnosis, I had to face the reality before I could move beyond my fear.

The usual human habit of allowing thoughts of death to remain in the background was now impossible for me.

These days, I use a wheelchair more often than not.  I use it because I have faced the reality that my legs are not as strong as they used to be.  My wheelchair is not a symbol of disability but a means to accessibility.

You have to face your giant if you are to overcome your giant.

There’s a story in the Bible about a young boy, David, defeating a so-called unbeatable giant, Goliath.

If David pretended there was no giant, he would never have picked up five stones.

He would never have experienced victory.

You have to face the reality that one day, you will die, it is at that moment you are empowered to live.

In a very real way, death is the secret to life.

Nothing will make you live more fully today than the realisation that tomorrow is never a guarantee.

So face it. And then:

2. CREATE IT

I have within my own breath the power to create what frames my world and how I live it.  And so do you!

I don’t mean this in a magical or even mystical way. I mean that the way you frame the words you use has a very real effect on the way you will think and the way you feel.  As you think, so you will be.

The words of your mouth and the meditations of your heart and soul create peace, or they don’t.

When you have lost your happiness, dreams and sense of fulfilment, you have to create them again.  How do you do this? By the words you speak and the meditations of your soul.

If I kept talking about how good the past was and what my dreams were, I would never speak new dreams into existence.

Only by letting go of past dreams are you able to dream again.

In this way, letting go is the secret to holding on.

I am learning that my thoughts and words must align for them to frame the world I want to live in. Some of my dreams are short-term, others are longer-term. Like seeing my grandson start school or seeing my granddaughter get married. You have to dream.

So face it, create it, and then:

3. LIVE IT

What are you breathing for?

I have an Apple watch and there is an alert that periodically reminds me to breathe. It also tells me when to stand (this always gets me smiling).

Anyway, when I am reminded to stop and breathe deeply, I imagine every slow, deep, prolonged, breath I take is filled with the life-giving breath of God.

This not only creates a sense of peace, but also works at reducing stress, which in turn reduces the effect and speed of disease in my body (or “dis-ease” as I like to call it).

Breathing is important.  But oxygen isn’t my only source of life.  

As a Christian, for me, it is being connected to God through prayer, the Bible and His church.  It’s allowing the life, love and light of His presence to inspire faith, hope and love.

Other ways are by being thankful, turning opposition into opportunity, by not getting offended, and by living with an eternal perspective, all of which I’ve touched on before.

I encourage you today, no matter the dead-end looming ahead of you: face up to the reality of it, create a new future, and live it out savouring each breath.

My prayer for you today is that you too could say without a word of a lie, that in every season, you are “living the dream” on your own detour to happiness.

Phil

Meeting my granddaughter, Maya

Last week, we met our beautiful granddaughter, Maya.

She is one year old and we are all in love!

Maya is the adopted child of my eldest daughter and her husband, their first child, and our third grandchild.

This has been a journey of over five years: a journey of faith, patience and courage as they have believed for this moment.  In fact, I remember writing a reference for Shannon and Rebecca as part of the application process for intercountry adoption. What I said then, is still true to this day.

I was looking back on that and thinking about what makes great parents. There are four traits I identified in recommending Shannon and Rebecca to the Australian government as adoptive parents, and they are four things I want to continue to cultivate as a parent and a grandparent in my own life.

These are the four things I believe are necessary for every parent to consider if they want to be the best they can be for their children.

1. Wisdom

Parents may feel overwhelmed by the increase and speed of knowledge, and they may wonder, how can we successfully raise children who may live in a very different world?

There are so many places to find more information and more knowledge on how to be a good parent and what makes a good child.

There is no doubt that in 20 years time my grandchildren will live in a far more knowledgeable world. It is not beyond the realms of a world filled with artificial intelligence and advanced assistive technology.

But none of it compares to wisdom.

Wisdom is the advantage and the great resource you can give your child.

Teaching them that just because something is able to be done or said, doesn’t mean it should be. Knowing what to do and say in any given situation is not necessarily just a matter of knowledge, but wisdom.

More knowledge with less wisdom can take that knowledge from being an advantage to human kind to a disadvantage.

For me the beginning place of all wisdom is to know God.   To bring a child to the place where they experience the love and grace of God through a relationship with Jesus Christ.

The Bible says in Job 12:13, “True wisdom and real power belong to God;from him we learn how to live, and also what to live for.”

2. Security

There are many types of security. To name a few: physical, emotional, financial security.

I love that my grandchildren will grow up in a loving, caring safe and protected family environment.

All parents have a responsibility, to the very best of their ability, to provide for their children.

Do you have a solid approach to securing future financial security? It is an important part of every parent’s role to provide their family with needed security, protection and provisions. What can you do today to help build an inheritance for your children’s children? Spend less? Save more?

Every child deserves a safe environment to grow and thrive. There are no exceptions. This should go without saying but unfortunately there are too many (while there is even one) children living in environments that are not safe, whether physically, emotionally and environmentally.  You can be the difference.

What’s more, no child should ever feel like the “only one”.  When it comes to building a secure self esteem and resilience, we all need a sense of belonging to others, to humanity, to family.

I believe that every child needs a warm and loving sense of “home.”

This secure home environment, whether it has the latest gadgets or furniture, the latest shoes or clothes, is far more valuable than any gift you could give them. Knowing you are a safe place, a security, will help them grow to live a healthy, vibrant and fun-loving life.

3. Love

We say we love our car, our house, our holiday, our food, then, in the same breath, we also love our children, family and friends.

Things can be seen as objects of usefulness or obstacles that hinder.  People should never be seen in this way.

Genuine love and concern for others needs to be passed on by example, not just speech. As parents, your integrity in how you love others will stay with your children for life.

People deserve love not objectifying.

Paul, the Apostle, wrote in Ephesians 5:2, “and walk in the way of love, just as Christ loved us and gave himself up for us as a fragrant offering and sacrifice to God.” That is what Christ was like.

He gives himself up, as Paul reminds us here. He is forever thinking of someone else. He is always reaching out toward someone else.

As a parent we are always conscious of “the someone else” in our life.

Love is a lifestyle. Love is observable and tangible.

Dr Barnhouse (March 28, 1895 – November 5, 1960), said referring to love in all its fulness:

“Love is the key
Joy is love singing
Peace is love resting
Longsuffering is love enduring
Kindness is love touching
Goodness is loves character
Faithfulness is loves habit
Gentleness is loves self forgetfulness
Self control is love holding the reigns.”

4. Hope

If anything captures the attention of children living in a despairing world, it’s hope-filled parents.

When I was diagnosed with MND/ALS, I knew my children would follow my lead through this journey.  If I lived with hope, they would also.  We as a family didn’t surrender to the “nothing you can do attitude.” I might not be able to get back the motor neurones that had already died, but I could give the surviving ones a fighting chance.  My children responded to that.

They are with me in actively fighting this deadly disease.  That’s HOPE and it’s contagious.

Some parents are unfortunately so negative about everything that they will never instil a spirit of hope for a better future in their children.

The fact is that our hope must be so observable so that others can see it.

Hope is a steady persistent optimism and trust in God.  It’s not just about loving God but also trusting Him.

1 John 3: 1 “See what great love the Father has lavished on us, that we should be called children of God!”

I finish this blog by encouraging you that, everything I’ve said about an earthly parent is also true of our heavenly Father towards us.

God is the source of all wisdom, He loves us unconditionally, He provides and protects and He has provided the ultimate hope in heaven and eternity.

Not only that but with arms outstretched, He offered us adoption into His own family. Our step towards Him is to put our faith and trust in Jesus. It’s the best decision we can ever make.

Have a blessed day!

From a very happy grandpa & a very proud parent,
Phil

8 Keys to Unlock the Door to your Destiny

Opening-Door

Do you ever feel confused about which doors, which opportunities, which path, or which way to go?  Do you think some doors should be pushed open and some should be left closed? Do you understand what doors are right for you?

I got to thinking about doors, the literal, not the figurative type, because very soon the door to our home will be modified so I can get my wheelchair in and out of the house.  I was amazed at how many different types of doors there are.  There are sliding doors,  doors inside other doors, expanding doors, automatic doors, swinging doors, revolving doors.

And it’s the same with life, it is filled with so many choices.  It is filled with doors we need to walk through and some we need to leave closed.

Even the Apostle Paul in the Bible (e.g. 2 Corinthians 2:12) used the metaphor of a door to speak about opportunities, obligations and opposition that were in front of him and I want to do the same today.

So how do you know which door to walk through and which to not?

Well, my wife collects old keys. The keys are so unique and tailor-made for the doors they were made to open.  I want to encourage you, that with the right keys, we can tackle even the most daunting, even the heaviest, even the oldest or newest of doors.  But, without the right keys, we can be left frustrated and hopeless.

In life, I think it’s the same.  There are certain keys to use before you walk through any given door.  These are a few filters if you like, that you can use to test that this is indeed the right door for you.

I hope this blog can help remove some of the frustrations associated when we are presented with doors of choice and opportunity.

8 Keys to Unlock the Door to your Destiny: 

Key 1.  Does the door align with your natural talents and giftings?

You can live in a way where you are in tune with who you are, even more than what you do.  It’s important not to make any decision based on a fantasy of ourselves but on who we really are.

You see, I’m a fan of F1 car racing. When I watch it, I fantasise about being able to drive one of those cars.  That’s what fans do deep down, they FANtasise.  But I’m not going to give up my current life to do something I fantasise about if it has nothing to do with my talents and gifts.  Knowing which door is right for you starts with knowing who you are and what you are good at.

Key 2.  Does the door align with personal and family values and priorities?

Every decision we make has consequences for us and for those around us.  If we can step back and ask ourselves what we truly value as a family, then it helps focus our priorities.  If an open door causes you to compromise your family priorities, then don’t walk through it.  If an open door causes you to compromise your faith, your beliefs or yours standards, keep it firmly closed.

Key 3.  Does the door align with your development and growth challenges?

It’s wrong to not walk through a door just because you’re afraid of what may or may not be on the other side.  That is living in fear.  Life, I believe, is lived more fully at the place of courage and faith.  Sometimes we have to take a risk to be able to enjoy all that the door has on the other side of it.

Key 4.  Does the door align with affirmations of those closest to you?

Whenever I make a move toward an unfamiliar door, I like to ask those who know me best what they think.  Are your friends and family supportive?  You know it’s your door when they are saying things like “this is you” or “you can do this” or “you were born for this.”  Don’t ignore positive affirmations from those closest to you.

Key 5.  Does the door align with future hopes and dreams?

The doors you walk through lead you to your future.  That’s the truth.  When your life is filled with hope for a better future, then you make decisions that will help achieve those dreams.  Walk through doors that are a step towards your goals.  You can see why having goals, hopes and dreams are powerful in forming your life today.

Key 6.  Does the door align with your understanding of biblical truth?

As a Christian, I would have to ask myself, does this opportunity align with my commitment to live according to the words of Jesus?  Does it allow me to love more, help more? Does it bring life? Is it’s motivation others centred? Will the outcome be peace and wholeness?  That forms the basis of my life.

Key 7.  Does the door align with a sense of destiny?

Does the door lead to what I believe to be my reason and purpose for being?  Do I sense this is where I belong?  Do I bring with me what is unique to and from others?

For those of you that know my recent journey with MND, you know that I have been presented with a door that takes me into living rooms, hospitals and bedrooms of the suffering.  It’s not a door for everyone, but for me at this time and for this season, it’s my door and I need to use it or I could easily fail to live to the full potential of my destiny.

It can be tempting to look around you and see what doors others are walking through and feel like you have to walk through that same door.  But you see, they have a different door presenting.

Key 8.  Does the door align with a sense of obligation?

Does the door carry a sense of “I need to do this”?  There are so many external needs that cry out for our attention and one person cannot meet every need there is.  We can’t do everything, but we must do something.  What is it that YOU NEED TO DO?

I hope the above keys can help you determine which doors are for you to open and walk through and which ones are to walk past.

Bless you,
Phil

Not alone

19424397_297623244032216_2880350275565371129_n

In the aftermath of the Big Freeze in Melbourne and Newcastle, I can’t help but be amazed at the support of the Australian public and our own local community rallying behind the fight for a cure for Motor Neurone Disease.

I’ve had a number of requests for a copy of the speech I gave at Newcastle’s Big Freeze Ball, so I thought I would publish it for you as this month’s Fridays with Phil.  My heart is that no matter how alone you feel at times, you would know you are never alone.

Hi everyone, my name is Phil Camden.

And I am not alone.

I am honoured to have been asked to speak for this wonderful occasion.  Not only because it is a wonderful occasion but because I am in a room of people who are fighting with me.

I am not alone.

There was a day, I was very alone.

It was the day I found out I had Motor Neurone Disease.

I was a fit and seemingly healthy 54 year old guy. Happily married, two grown girls, enjoying all Newcastle had to offer.  Some would call it the prime of life.

I noticed my leg muscles cramping when I would do even the most standard run.

My physio saw the cramps first hand and referred me to see a GP.  The GP referred me to a Neurologist.  The Neurologist did some tests.

He was the one who delivered the fateful news that I was facing a terminal disease that had no known cause nor a cure.

I had Motor Neurone Disease.

I drove home that day, alone.

It wasn’t a loneliness that comes from a lack of company.

I was alone in this disease. 

I had never heard of it.

I didn’t know anyone else who had it.

I couldn’t really explain what it felt like to be told I had maybe months, possibly a year or two to live.

It didn’t seem fair – why me? Why now?

I was alone with my diagnosis.

I sat in my car with the doctor’s letter on my front seat.  I sat at home staring at disbelief at what google was telling me. I sat with my wife and my daughters weeping, at times unable to stand from the grief that was all consuming.

I was alone in my death sentence.

But that was then.  And this is now.

What a difference the team at Fight MND and you, each of you here, have made.

I don’t just want to thank you for your money, but I do thank you.

I don’t just want to thank you for your tireless effort, but I do thank you.

I don’t just want to thank you for courage, but I do thank you.

I don’t just want to thank you for your being here, but I do thank you.

I thank each of you.

For those who have sacrificed, campaigned, and supported to make this inaugural Big Freeze a success!

You may not realise what you have done just by being here tonight.

I want to tell you…

From the bottom of my heart, and on behalf of all those who have been touched by this disease, we now know: we are not alone!

You see, there is an army rising up , growing everyday, and you are part of that army.

It’s an army that is not satisfied with no hope.

It’s an army that is not satisfied with no treatments and no cure.

It’s an army whose actions are louder than their words.

It’s an army who knows that we are stronger together.

The reason why we have got behind Neale Daniher, his daughter Bec and Fight MND – is because we are stronger together – and the legacy of what we have seen today will live on beyond my lifetime, and beyond yours.

Together we can achieve more, together our money goes further, together we bring greater awareness, and together we will bring a fatal blow to the beast that is MND!

To take down this beast will mean all of us doing our part.  You may think your part is only small, but the sum of all of those parts creates a great impact.

Friends, today is not about me or Neale Daniher or any one person.  This is about all of us together.

I realise tonight, that many are here because you have suffered the loss of a loved one with this disease.

We want you to know their death has not been forgotten and has not been in vain.

We are building tonight on their memory and their legacy.

I hope as you look around this room tonight, and as you saw the support these past weeks, you would know you are not alone:

in the memory of your loved one;

in honouring their life;

in what was the greatest fight of their life;

Tim, Jim, Leah, Janine and Janine, you are not alone.

To all those who have lost loved ones to this insidious disease, you are not alone.

When we do find a cure, we will owe it to all those who have gone before us!

And I say “when” we do find a cure, because I wholeheartedly believe, there is a cure, we just haven’t found it yet.

As very good friends so aptly put it, “when we do find a cure, we won’t be able to put a price on it.”

It may not happen in the next year or two and many may die before it does…

But what we do know is in Australia 2-3 people died today, 2-3 will die tomorrow, 2 or 3 died yesterday – and it won’t change without action.

This disease needs to be taken down!

You see, I still have a death sentence hanging over my head, I don’t want to sugar coat that.

I can barely walk.  Others I know can barely talk.  They can barely breathe.   This disease is a beast.

I have buried men who only months before were strong and healthy.

I meet them at our MND support group.

I meet their partners, I meet their kids.

I watch as they can no longer move their legs, their arms, their tongue to speak or their jaw to eat.

I see firsthand as they become prisoners in their body, all the while fully aware of what is happening to them.

Being a minister, they have asked me, and it has been my honour, to eventually bury them.

But it has to stop!

I’ve buried too many people who have died to this disease.

I’ve sat with too many grieving families losing their loved ones far too young.

Just last month, I met a child with MND.

It makes me so angry.

The people I have met through this disease can only be described as wonderful, courageous, salt of the earth, the real deal. Did I mention courageous?

Their families are astounding in their relentless support, care and resilience in caring for loved ones who can no longer care for themselves.

When I have looked into the eyes of families who with tears running down their cheeks, mourn the loss of their husband, father, sister, mother, it spurs me on!

I don’t want to just be angry or sad or defeated and the beast wins.

I want to use every breath I have, by every means I can to deal a fatal blow to this disease.

I want to be an ambassador that there is always hope. Always.

To the disease I despise, your greatest days are behind you and an army of us are coming at you with all we can muster.

Why?

So that, one day, whether in our lifetime or not, a doctor, can sit across from a patient, like I did that fateful day, and hear the horrible news that they have Motor Neurone Disease but then be told:

YOU ARE NOT ALONE.  THERE IS SOMETHING WE CAN DO.

Every cent given says, “you are not alone.”

Every message of encouragement says, “you are not alone.”

Every time you help share awareness of this disease, it says, “you are not alone.”

I am not alone. And neither are you.

Straight talk: wheelchairs etc.

Processed with VSCO with kk2 preset

No man is an island.  In one form or another, we all need help.  Isolation, as tempting as it can be, will not achieve the purpose for which you have been created.

Your life: the good, the bad, the ugly, can help someone else in their journey.

I wonder what your journey could teach me?  I hope I will always stay open to that.

I wanted to write today’s blog to help you.  It’s also written to help me and people like me.

You see, when I was first diagnosed with Motor Neurone Disease (MND) or ALS, I was not familiar with disability.  I knew of it, I had touched it, but I hadn’t been immersed in it.

Four years on, I wouldn’t say I am an expert but I would say there are things I know now, I didn’t know then.

Those in my world would know I have started using a powered wheelchair (PWC) more often than not.

My leg muscles have progressively weakened over the past four years, but at a slow rate for which I am thankful.  My neurologist reminds me rather bluntly, “you should be dead.”   Well, I am not dead and I am very happy about that.

I have maintained by upper body strength, but in this part of my journey, it is difficult to walk, to balance, and there is a high risk of falling.  One friend in Queensland with MND at a similar stage as me, expected to live at least another year and a half, fell, hit his head and tragically passed away.

That I have started using a wheelchair may come as a surprise to many.  Especially those who haven’t seen me for a while and when they do I look physically ok.  I’ve had someone say, “You don’t even look like you need a wheelchair!”

There is no way I would be using one if I didn’t need it.

If for no other reason than I love fast cars and these things don’t fit inside those.  I rely on my family to help load and unload me and my chair.  That aside, it’s the right thing to do.

Using my wheelchair is not giving up.  It is actually the opposite.  I use it to fight on, to stay connected, to have independence and to live life to the full.

Do I wish I could walk like everyone else? Yes.

Do I wish I did not have to use a wheelchair? Absolutely.

Am I giving up? No. I am trying to stay alive!

Can I walk? Yes, for short distances.

Should I walk? No, not often.

I can walk short distances but I am safer in public to use my wheelchair.  Muscle fatigue can cause me to be off-balance and at risk of falling.

My wheelchair has thousands of dollars worth of support and cushioning to support my core and backside so I’m more energy efficient and comfortable in the chair when out and about.  By using the chair, I’m able to conserve energy for the more private necessary walking, personal care and even driving every now and then.

Recently I was travelling by plane with my wife Lenore.  While waiting for the gate to open, a flight attendant came towards us.  She glanced at me in my chair and then proceeded to ask Lenore, “Will he need assistance to get on the plane?”

Their conversation about me went on while I was sitting there.

My wife is now an expert at this situation, and is helping direct the person speaking back to me when I am the topic of conversation.

Just because a person is in a wheelchair doesn’t mean they don’t exist, cannot comprehend, speak for themselves or make wise choices.

On the other hand, I was in a store, Universal Store in Charlestown, and the young shop assistant walked confidently up to me and asked, if she could help move anything around to make it easier for me, to please let her know.  I was so impressed.  She got it.

In brief, some of the things I found helpful in navigating this new part of the journey and hopefully has made me more aware of others in chairs too:

  1. Speak directly to the person.
  2. If you are in a moving crowd, be aware the person will need to stop the chair before they can shake your hand.
  3. Treat the chair as an extension of the person. Touch it as you would someone you were speaking to, but don’t lean on it, hang things on it or take over the controls without checking first.
  4. Focus on the person, not the disability.
  5. Always ask if the person would like assistance and accept their answer.
  6. Express yourself naturally.  It’s ok to say “let’s go for a walk” or “let’s walk to the café” even if the person can’t “walk” – just be yourself!
  7. Keep your feet safe and clear.  Chairs are heavy and the tyres are solid. The person driving it can’t see behind them and doesn’t want to hurt you.
  8. View the chair as a means of freedom to move independently.
  9. It’s ok for children to notice and ask questions. Adults discouraging a child from talking can be more confronting.
  10. If talking for an extended time, and the person isn’t able to raise their chair to eye level, find a seat so as to be at eye level with them.
  11. I hate the idea of blocking someone else’s view due to the size of the chair.  From my experience, people in chairs are more than ok with being asked to move if they are in the way.
  12. If you want a person in a chair to move forwards, backwards, or out of the way, just ask as you would an able-bodied person.
  13. Don’t think you can outrun me, I can go 10km/h for 70km 🙂

Thanks so much for reading this. Means a lot.

Love,
Phil

To the disease I despise

image1

Let’s get one thing straight. I am not thankful for Motor Neurone Disease.

It’s a hideous disease. No, I’m not thankful for it.  In fact, I despise it.

People with Motor Neurone Disease (MND) progressively lose the use of their limbs and ability to speak, swallow and breathe, whilst their mind and senses remain intact (some say it resembles being buried alive). The cause is unknown. There is no cure.*

I meet and watch as strong healthy men, in a matter of months, can no longer move their legs, their arms, their tongue to speak or their jaw to eat. I see as they become prisoners in their body, all the while fully aware of what is happening to them.

I’ve buried too many people to this disease. I’ve sat with too many grieving families losing their loved ones far too young. Just last month, I met a child with MND. It makes me angry.

Personally, there have certainly been moments living with this disease, for four years now, when I grieve what I can no longer do, but I try to keep them to moments and short ones at that, while focusing in on what I do have and can do.

I have become more aware of the small things I can be thankful for.

I’m not thankful for my MND but I try to be thankful in the midst of it. Maybe you have heard me say that before, but you need to understand that it’s not a passive, absent thankfulness.  It’s very active.  It’s very intentional.

I wonder in this fast-paced and full life, if our thankfulness, as good as it is, doesn’t turn into something more?

I wonder if we sat with our thankfulness for just a few more moments, if it would cause us to become not only thankful, but also thoughtful, and not just thoughtful, but active?

I have noticed that each time I am thankful for being able to walk, I am drawn to pray for those, who for the first time will be placed in a wheelchair and never be able to walk unassisted again. But what if there was more I could do?

Each time I am thankful that I still get to taste my food, it triggers thoughts of those who will be getting a feeding tube and therefore never taste food again. But what if there was more that could be done?

MND is no respecter of persons; it can strike anyone; and each day in Australia two people die from MND. Average life expectancy is 2.5 years. For every person diagnosed with MND, it is estimated that a further 14 members of their family and their friends will live with the effect of MND forever.*

I, by no means, wish to diminish the power of thankfulness in our lives.

Research shows that daily discussion of gratitude results in higher reported levels of alertness, enthusiasm, determination, attentiveness, energy, and sleep duration and quality.

Grateful people also report lower levels of depression and stress, and although I do not think we should deny or ignore the negative aspects of life, there is a significant importance of gratitude.

When we are unaware of what we have, we are also unaware of what others don’t have. It is the breeding ground for self-focus. Thankfulness and gratitude develop thoughtfulness and compassion for others as we realise what we have.

We may live in a thankless world, but it is important that we increase our compassion for the less fortunate.

I do wish to encourage us all today, that there is more we can do!

You see, I want to use every breath I have, by every means I can to deal a fatal blow to this disease. I want to be an ambassador that there is always hope. Always.

To the disease I despise, your greatest days are behind you and an army of us are coming at you with all we can muster.

Why?

So that, one day, whether in our lifetime or not, a doctor, can sit across from a patient, like I did that fateful day, and hear the horrible news that they have Motor Neurone Disease but then be told, “THERE IS SOMETHING WE CAN DO!”

In hope for that day, and in action towards it, I have partnered with Cure for MND and the Big Freeze to help host a huge awareness and fundraising campaign locally in Newcastle. If you are keen to join me, you can follow the links below.

Appreciate your continued support as you help us fight the beast,

Phil

 

For tickets to the Big Freeze Ball (selling fast) visit: https://www.stickytickets.com.au/50467/big_freeze_newcastle_ball_2017.aspx

Join me for a night filled with music, laughter, and community spirit as we raise awareness for Motor Neurone Disease and vital funds for Research into a cure. Saturday June 17, will be a great evening in the Starlight Ball Room, at Wests New Lambton.  All Proceeds from the night go directly into funding vital research into a cure through the Cure for MND Foundation.

For more information visit www.newcastlefreeze.com

*Source: Deloitte Access Economics report Economic Analysis of MND in Australia:  http://m.mndaust.asn.au/Get-informed/What-is-MND/Facts-and-figures

Five qualities I can’t live without

Processed with VSCO with c1 preset
Another day in the office. Some of the great people helping me fight MND.

A while back, one Boxing Day, my son-in-law and I bought remote control helicopters. Well, mine has not been working for a while, and I find out, neither has his. Mine spins and flashes but doesn’t take off the ground. It doesn’t fly, which is what I bought it to do.

My son-in-law suggested recently that we should take parts from his and make at least one that works.

Because they are the same make and brand, this is a possible solution.

It made me think that much of our lives can be spent spinning and flashing, like my broken remote-control helicopter, but not really getting anywhere, not taking off, not flying.

Maybe the answer is getting the missing parts of our lives from others with a similar culture or DNA. Maybe the broken or missing parts we need can be found in others, in partnership and togetherness.

Maybe we were never meant to fly without the assistance and help of others.

When I was diagnosed with Motor Neurone Disease (MND) and given only a short time to live, I knew if I was going to give this my best shot, then I would need to get some people on my team that thought and fought like me, so I could “fly”, if you like.

What will get you through the challenges of life and make you stronger, are people who share the same values and the same perception of your world. They don’t have to be the same as you, but would be willing to bring their unique parts to the table.

I wouldn’t be where I am today without the multidisciplinary team of friends, family and professionals who have become a lifeline.

If you are going to be the best “you” that you can be, to achieve all that you have in your heart to achieve, then believe me, you will need others.

So what exactly do you look for in others? There are five great qualities that come to mind.

First: someone with answers.

A million people will find fault, find the one who finds answers. When I was choosing an Occupational Therapist (OT), I was looking for someone who had vision, foresight, a sense of mission and a positive outlook on life.  I chose someone who could see the challenge but was creative enough to come to me with answers.

Second: someone who is fruitful.

I want my team to show fruitfulness in what they do; they have results from past endeavours. I have a physio who is very new to the field but in the short time she has been a physio she has shown great dedication and already has great references.

There is a passage in the Bible when Jesus walked up to a fruit tree and cursed it because it didn’t have fruit.  The funny thing was, it wasn’t the time of year for fruit. So why was Jesus so hard on the tree? Perhaps because He knew this tree would not bear fruit.

Third: someone willing to be in alignment.

To get people moving in the same direction and in the same way may mean firstly identifying misalignments and then creating realignment.  When the tires on your car are aligned regularly, they last longer and give a safer and more comfortable ride.

When it comes to the people on my team to fight MND, I have to first address the misalignment that “I’m just going to surrender and wave the white flag.”  NO WHITE FLAGS on my team thank you very much.

We will acknowledge the reality but we will not give into it as having the final say.  When it comes to new assistive technology, it’s about bringing me more freedom, not less. I’m not afraid to adopt early suggestions from OTs, but the reason must be for longevity and freedom to live. The motivation for incorporating this technology is not because of a disability but because it will give me greater ability.  It’s only a small alignment in thinking. And it makes a big difference to me.

Fourth: someone who makes me feel good.

I’m not afraid to say that I want people in my life who make me feel good.  They are good for my mind and emotions.  When I have an appointment with my neurologist, naturopath, counsellor or doctor, I want to like them and their attitude.

God calls us to a life of loving those who don’t show that same love back, but that doesn’t mean we have to rely on them to help us fly, so to speak.

In hard times, you will need people you like. You may not want to necessarily holiday with them but you can honestly say that they are a nice person.

If you are thinking, “well I don’t know any nice people,” then maybe you need to start being nice. Nice attracts nice.

Fifth: someone of faith and courage

I want people on my team who can see beyond today’s limitations, someone who is not satisfied with the status quo, someone who finds better ways of doing things.

I want my team to be courageous enough to tell me when it’s not safe for me to drive, but at the same time, keep me driving for as long as I can.

People who encourage are people who put courage in.  It’s not just by their words, but by a sense of their being.  Sometimes, it is just knowing that they are with you. The net is made stronger and bigger by them being there.

There you have it:  five things I look for in people I do life with.  Who knows, it may just be part of the puzzle that keeps me going to fight MND.

Phil

Blog at WordPress.com.

Up ↑

%d bloggers like this: