Fridays with Phil

For the past five years I have become friends with some really amazing people on this journey with Motor Neurone Disease (MND) / ALS.

They are people who I have come to love dearly, people who I have shared the highs and lows (mostly lows) with, as the disease continues to relentlessly ravage their body and eventually take their life.

Recently, I lost three of these friends to this disease, all within two weeks of each other, and all from my hometown of Newcastle. Then, I lost a fourth friend a month after that.

I was emotionally drained. I’m not proud to say, I began to build a wall of resistance around my life.

I built a wall that I believed would protect me from ever again feeling the pain of loss that death and suffering had brought.

My prayers had become prayers of self indulgence and self focus. Prayers like, “God I can’t and won’t do this anymore. I won’t reach out to people who are dying, just to be hurt and disappointed.”

To my shame, I didn’t want to get to know more people who I would come to love, just to lose them.

No sooner did I pray these prayers than I was being introduced to four other people who had just been diagnosed with MND. In fact, today, I am meeting up with two of them for coffee.

However, to tell you the truth, I was really struggling to open up, to again build relationships, only to see my friends suffer at the torture of this disease.

I knew that unless a miracle happens in our lives, we would be separated by a cruel death.

Then something shifted.

In my pain, I began to think about all those who have loved and been hurt.

I thought about others who have loved and lost: the partner who has loved and been abandoned; parents who have buried children; children who have seen the parents they love separate; anyone who has loved and seen that love rejected; the young person who opened their heart to have it crushed by abuse or unfaithfulness.

I came to realise that there were others like me who had built or were building this same wall to protect themselves from further pain.

I could see how easy it would be to build a wall of resistance for self preservation.

Why? Because I was doing it!

How easy it is to believe the lie that it is better to not love than to lose the one you have loved.

Soon after the funerals of my friends and being introduced to others who would soon become friends, I was chatting with God and reading my Bible (something I try to do each morning), in particular Ephesians 5: 1-2 which says:

Watch what God does, and then you do it, like children who learn proper behaviour from their parents.  Mostly what God does is love you. Keep company with him and learn a life of love.  Observe how Christ loved us.  His love was not cautious but extravagant.  He didn’t love in order to get something from us but to give everything of himself to us.  Love like that.

The words, “His love was not cautious but extravagant,” just captured my heart and my mind, they penetrated deep into my soul, challenging and at the same time changing me.

Those words, like a bulldozer, began to smash the walls of my resistance and defense.

This Jesus who loved and yet was hurt, rejected, ridiculed and eventually put to death, continued to love without caution. Jesus loved without a sense of self protection or preservation.

In fact, His love was extravagant.

I again began to understand that a life without love and loss is not a life that we are called to live.

We are meant to live life loving courageously.

I found that when my heart decided to love, the resistance that my mind had built up began to crumble.

I may not fully feel the deepest of pain that you may be feeling today, but I do now understand the resistance you may have to fully loving again.

Can I encourage you to courageously find a way to communicate from your heart to your head that love is worth another go?

To love will have its challenges but to overcome those challenges and to love again means to begin to live again.

To live again means that your love is not cautious but extravagant.

You may have had a broken marriage, but you can love again.

You may have had a friend die, but you can love again.

You may have had a colleague manipulate or bully you, but you can love again.

Your trust may have been smashed into a million pieces, but you can love again.

Will it be easy? Are there guarantees that you won’t be hurt again?

No. It won’t be and there aren’t, but if you don’t learn to love again, then the guarantee is you won’t experience all that life has to offer.

Begin today, at least in your heart, to go where you have feared to go. You don’t know where your next step will take you, but a step takes you forward, and through your built up walls of resistance.

As you allow these walls to come down, watch how your life opens up to new possibilities. You will find that the walls didn’t just keep you locked in, but kept others out who can love you and with their love, help you love again.

As for me, I will continue to meet new friends or as they are affectionately called in the United States, PALS (people with ALS). I will love them and at times lose them, but as Alfred Lord Tennyson once aptly said, “’Tis better to have loved and lost, than never to have loved at all.”

And it’s true for you too.

Happy Friday,
Phil

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

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

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

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

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.

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