An open letter to PM Abbott: the choice of a lifetime

Dear Prime Minister Abbott,

Respectfully I am extending my hand of hope on a matter that confronts and challenges our deepest philosophical convictions about the meaning and purpose of life.

The matter is readily shaped and influenced by our religious and moral upbringing. It is also a matter that usually lies dormant until unexpectedly, one's foundation is rocked by the reality of one's or loved one's mortality with diagnosis of an illness, a disease determined by the medical world as terminal.

In a society that values, promotes and encourages personal responsibility, self-empowerment and ownership in how one shapes and lives their life, this freedom is not extended to the freedom to choose when to end one's life.

In life we must accept to expect the unexpected, for better for worse. I came to witness the realisation of my own mortality three days prior to Christmas Day 2011, when diagnosed with an insidious disease known as Motor Neurone Disease.

Motor Neurone Disease is a terminal condition where the nerve cells that control the voluntary muscles throughout your body are destroyed. Muscle weakness and wasting occurs throughout the whole body, leading to gradual paralysis, loss of speech, difficulty swallowing and finally death from respiratory failure.

The average life expectancy for someone with this cruel disease is only 27 months. About 1,900 people currently have Motor Neurone Disease in Australia, and this number is increasing.

Unfortunately, research funding is inadequate and root causes of the disease still an unknown. A cure is not on our immediate horizon and sadly, not in my diminished lifetime.

It is a slow and gruesome death. It is terrible to watch yourself physically fade away, while your mental state remains in pristine condition. If I am to describe my state, it is simply that I am becoming trapped within my body.

In fact, my body has become my coffin, alive within and virtually lifeless without.

But what is more painful and sobering than watching yourself accelerate toward an death before your time, is your family and friends watch someone they love and care suffer, waste away, and ultimately die before their eyes.

My wife and daughter do not deserve to witness such a tortuous end to a life, and the associated emotional trauma etched within their memory and heart.

When an unexpected event occurs in your life, one where the prognosis is a malignant one, you simply have two choices – to wilt away and succumb to the perceived burden placed upon your shoulders, or rise to the occasion.

I take comfort from something Muhammad Ali once said, "God will not place a burden on a man's shoulders knowing that he cannot carry it." Today, I see my predicament as a blessing in disguise, an opportunity to rise, to inspire, to fight for causes in which I am passionate, and give hope to others in similar situations.

This 'dark night of the soul' journey tests all facets of your essence - emotional, mental, spiritual, and of course, physical. Things we take for granted are stripped away. Today, I am unable to feed myself, bathe myself, toilet myself, dress myself, walk, and my speech is now also slowly failing me.

But it is more than these physical attributes that is stripped from you. It's your dignity, your pride, your privacy, your independence, and a sense of helplessness, when your partner is also diagnosed with a serious disease in breast cancer, and you are unable to hold, comfort and care for your partner.

And this for me, more that anything is the most painful, as a husband and as a father unable to be there in their hour of need.

But my life challenges do not deter me. I continue to have an extraordinary passion for life, my family, my friends, and community. Ironically, this passion and thirst for life has grown exponentially in the last several years following my diagnosis.

Despite my situation, I continue to find ways to participate in life. I believe I still have something to contribute to society. While my ability to speak is diminishing, I believe I still have a voice worth listening to. My breath is gradually fading, though my zeal for life is left untarnished. The body is frail and failing me, but my inner spirit still roars.

And while my sunset is approaching, the afterglow of my essence will hopefully remain in the memory of my wife, daughter, families, and friends.

Each year, my festival partner and I organise the Newcastle Italian Film Festival. In our fifth year, we organise events that contribute to promoting Newcastle as an economic and culturally diverse and vibrant hub.

Through the lenses of foreign films, our key goal is for people from all walks of life to come together and understand, be compassionate, embrace and respect each other as individuals, and as communities regardless of your heritage.

Another important goal is to raise awareness, and contribute back to our community by donating net profits of the film festival to a charity. In the past four years, we have proudly donated $35,000 to charity.

This year, in 2014, our Festival takes on a more personal tone with the Motor Neurone Disease Association NSW being the financial beneficiaries of the Newcastle Italian Film Festival.

In our small way, we wish to raise awareness, raise much-needed funds for research, and to assist the people and families suffering from this dreadful disease.

I have the utmost respect for our public institutions, and in particular the office of the Prime Ministership. Growing up, I loved listening to my father and uncles passionately discuss the political issues of their day. This helped shape my values and sense of community service, and how I can make our world a better place.

I once had personal, though some may say delusional, aspirations in leading this great nation of ours, and even completed a Master of Politics and Public Policy as my hobby to better my community and myself.

While we may have differing philosophical policy positions on certain economic and social issues, I greatly respect and am inspired by your explemary leadership during the Malaysian Airlines Flight MH17 disaster, which has tragically taken the lives of innocent people, including Australians.

It reveals your extraordinary compassion, empathy, and strength in a time of uncertainty and pain for suffering families, friends, and Australians as a whole.

Today, I reach out to you in many Australians' time of need on another serious matter. Your leadership on this matter means a great deal to many Australians with a terminal illness, to their families, friends, and those Australians who believe in freedom of choice in ending one's life with peace, serenity, and dignity.

This is an issue that needs our Prime Minister to be fearless, courageous and lead from the front. It is an issue that politicians cannot continue to afford to dance, duck and weave which makes Muhammad Ali proud. I believe Australians overwhelmingly support the freedom and empowerment of choice on this matter.

We are rightly proud and accepting in fighting and heroically dying in war for a nation's cause or ideal on foreign soil. But that bravery and acceptance does not extend to those battling from a terminal illness, and who wish to end their suffering.

We have the decency to end man's best friend and other animals suffering to relieve them of their pain. But that decency does not extend to our human kind, at least not in our country.

And at the other spectrum of life, we permit the termination of life by aborting a life within a womb, a life that is unable to express their right to live or die. A life is a life at conception and not some arbitrary date post conception. So it seems illogical to prevent someone with the ability to think rationally and express the desire to end his or her life unable to do so.

The debate should not be decided based in favour of one's personal religious beliefs. We need to rise above the tribalism of religion, which is contorted by personal agendas and misunderstandings of Biblical references dependent on one's faith, and which has killed countless innocent lives in the name of God.

While raised a Catholic, as time goes by you realise we are more than a particular religion, and that humanity is one church of souls learning, teaching and supporting one another. Whatever your definition of God, God does not take sides based on one's religious leaning.

I believe in Jesus, but as a great prophet who understood the timeless universal principles of life – to love unconditionally without judgement, to live with compassion and gratitude, to give without expectation, and forgive others but most importantly of one's self.

While I have a great respect for the institution of the Church, has it lost its relevancy and relinquished any perceived moral superiority by their sexual abuse of innocent children and to then have the audacity to hide behind God's cloak?

Religion needs to rediscover its true original intent, find its spirit again, and teach in the language of unconditional love that resonate with the people and who are craving for its guidance.

And while I do not attend Church physically on a regular basis, I always endeavour to carry the concept of Church based on these universal principles. When we rediscover and reconnect with these gifts of spirit, we become empowered to make choices from a place of strength and wisdom.

I am not fearful of death. And I don't believe to end your life is sinful when you are suffering. When Jesus died on the cross, his act was one of redemption of all of humanity's sins. Our sins are already forgiven. There will be no judgement day. We have judged enough of others and ourselves in this life!

In fact, as a result of my health challenges, I realised we do not have to die to go to heaven, whatever your definition of heaven. Heaven is a state of Being rather than some place we must aspire to at the end of our lives. Make earth your heaven.

Strangely, I am grateful to my disease. In the midst of my physical disintegration, I have found contentment, peace of mind, a love for life and importantly of myself, and discovered the things that truly matter in life.

And it's not that support and care is lacking. The support my family and I are receiving is inspiring. The National Disability Insurance Scheme is a blessing. The carers, nurses, doctors and other mainstream and complementary medical practitioners in our circle of has enriched our lives and alleviated the stresses associated with the disease.

At times, our home is more like an international airport terminal, with the hustle and bustle of people coming and going. But we enjoy the friendships that have developed, the banter, and discussions on the meaning of life.

While once my focus was on materialistic goals, including being Prime Minister, today my goals are more holistic, including to grow old with my wife, to walk my daughter down the aisle on her wedding day, and to be a grandfather.

I support strict regulations that ensure only those individuals with a terminal or incurable illness, suffering unbearable pain, their quality of life profoundly affected, has the right and choice to legally end their life.

Safeguards can be implemented to protect those unable to protect themselves, for example, the individual to be of sound mind, and a request to die verified by three medical practitioners - a specialist with expertise in the field of the individual's condition, a psychiatrist to determine one's state of mental health, and an independent or the individual's GP.

I do not want to end my life on foreign soil. I prefer to end my life surrounded by my families and friends in the city and country I love dearly.

As Australia's ageing population grows in the foreseeable decades, the voice of this generation for the right to die with dignity will become louder. You can be defined as a Prime Minister for the ages, by sponsoring the right to die legislation, legalising same sex marriage, and accepting that climate change is real.

You can go down in history as a greatly revered and respected Australian leader who put aside the politics of fear, of self-interest, and the politics of divide and conquer, to one that embraced inclusiveness and the beliefs of the majority of Australians.

Prime Minister, I have no desire to end my life right now. I love life too much and my quality of life is such that I still enjoy aspects of it, despite my situation. But there will come a time where I choose to end life because it will be too unbearable. This is a right I believe all Australians should have.

I end with a quote by William Jennings Bryan - "Destiny is not a matter of chance. It's a matter of choice. It is not a thing to be waited for, it is a thing to be achieved". I hope that you will take my hand of hope and offer individuals such as myself to be empowered to make the decision of our life - to end it with dignity, serenity and peace at a timing of our choosing, and not by chance.

I hope to stand beside you and many Australians, on the right side of history, and extend to people their last and lasting wish of their extraordinary life.

Thank you Prime Minister for allowing my voice to be heard.

Yours respectfully,
Dino Cesta