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.
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.