My name is Sam DeBattista. I am the 19-year-old euthanasia campaigner who wrote here a few weeks ago to share. Two years ago I was told that in years to come my body was going to betray me. Is going to betray me. My memories are going to be dust in the wind. 

At 17 years of age I was told that no matter what I do, how much I fight, I was going to die of a degenerative disease that is totally and utterly incurable. It’s a battle already lost. In that same moment I was told to go on with my life as if nothing happened. 

Up until then I was a teenager. I believed I was invincible because that’s what teenagers do. They are reckless and infinite all in one breath. I was no longer invincible. My breaths became numbered. Sure everybody is destined to die but how many of us live with that knowledge day in and day out? How many are stripped of their life and left only as a shadow of a person? 

My family were willing to take my place but life doesn’t work like that. They made countless deals with God but no one answered. The same year the 10th person was sworn as president and celebrated our country’s livelihood, I mourned my liveliness; I regressed while Malta progressed. 

They say when something bad happens you experience the world from a rejuvenated perspective and it’s so true. The air tasted sweeter, the sun warmer, the stars brighter, the rain wetter but the darkness seemed deeper, the abyss closer, and the world was bigger. Too big for me. I felt alone and isolated because, despite everything I did, it was all so futile. I wasn’t going to remember any of it in years to come. 

“So how do you give closure to someone who was stripped of hope? I found it in euthanasia.”

I would have to get used to depending on people because HD does that to you. It strips you of your dignity – but maybe you know that. Let me share something you don’t know. I have HD, it’s in my genes but I don’t feel like I’m terminally ill, I feel fine. Sure there are days when I forget, or I shake. There are days I feel like my mind is playing tricks on me. But I brush it off and I try to be a teenager. So you’re probably thinking why is it such a big deal? 

It’s because of the bad days, the days when ‘nothing you can do about it’ is all I can think about. When I rack my brain for the name of the person in front of me. When thoughts of the unknown are worse than the disease itself. There are days when I think today is the day I forget dancing around the living room with my family, that I forget playing indoor baseball with my brother, that I forget sitting alongside my friends putting makeup on for a night out. I fear today is the day I look at the people I love most in the world and feel indifferent. 

So how do you give closure to someone who was stripped of hope? I found it in euthanasia. It’s shocking I know. 

I had picked out my future children’s names, the song I would dance to at my wedding, (it’s Righteous Brothers’ Unchained Melody in case you’re wondering). I had imagined the porch I was going to grow old on, I had imagined many Christmases with my wonderful family. I don’t know if I’ll make it to those things, if my mat will be forever placed at the dinner table, if my bed will remain undone because I never make it anyway. I don’t know if you will remember me but what I do know is that if I am going to get to experience any of it I want to be fully aware of it. 

I want to be me, not a stranger I don’t recognise and I want to cherish those memories for this lifetime and the next. HD doesn’t let you do that. It robs you of the happiness you have built and though my foundations are as fragile as everyone else’s I plan on my tower of happiness being tall enough to touch the sky. I want to feel invincible again. Remember what it feels like to feel untouchable, to have such insignificant worries? 

You are probably wondering why I am telling you this but I have spoken to the people who make these decisions. To the ones that cared enough to listen. They have treated me kindly and smiled at me as I shared my story. They have exchanged courtesies of condolences and remorse for someone who is still breathing. They have welcomed me with open arms and hearts however their minds have been conflicted. They have heard me, but they have not listened. For some that’s a lot more than they have been willing to do. 

Some put their foot down and stick their fingers in their ears like children on a playground refusing to hear the realities of the world. They choose to live in a world that is black and white yet they ignore the many shades of grey. They would rather listen to those who simply make claims about understanding not having gone through it themselves than the person struggling to keep ahold of their sanity.  

“I have been polite and accepted as I have been told my campaign is not on the agenda but, in reality, death is not on anyone’s agenda.”

I have been polite and accepted as I have been told my campaign is not on the agenda but in reality death is not on anyone’s agenda. Yet it’s something we all have in common. Some a death harsher than others. No one else will fight for my right so this is me doing that because I believe in you. I believe in the country that against all odds fought for the rights we take for granted today. An island that once fought for its freedom is now limiting my own. 

I’m sorry if I seem outspoken but no one wants to hear about the pain and the suffering because it’s not glamorous, it’s not marketable. No one wants to be the person to say yes to death but by saying nothing they are saying yes to unendurable pain, yes to inhumanity, yes to turning their back on allowing people like me the comfort of their own home in their greatest time of need. 

By now people are probably sick hearing about me mentioning it. I have become the Huntington’s girl because that’s all the world hears about and I see what is said. I see that my campaign is not priority to some because why would it be if I am not family nor friend to the people who share this opinion? I have seen things like ‘she should take pills, poison,’ because all they see is someone who wants to die but I intend to live far more than any of them ever will in a full lifetime. 

The craziest thing is that I am so estranged from these people yet they hold more of a say over my life than I do. Unless it’s happening to us or the people around us, we don’t care. The system does not care. We are selfish by nature because it is impossible to imagine something that seems so improbable. It was impossible for me to imagine it. 

We are this great democracy yet I am being dictated on how I should deal with my incurable illness. Nothing will ever change by turning a blind eye. We’re all still going to die only you will get to do it in this wonderful country we both love so much. 

I hope you get to take your memories with you too and do not have to endure a long winded process of passing. I hope you will not have to stare at strangers crying in relief because that is my reality. It is okay if you too have to be politically correct and tell me that while we are progressive, euthanasia is not for this lifetime but maybe for someone else’s hands to deal with. I understand that euthanasia is incomprehensible, a betrayal of life to those who are not walking in my shoes. A sacrilege to those who have the privilege of entrusting their future in someone else’s hands. However, life can no longer be measured by years but by quality. If you are truly living then you have nothing to fear in death. I don’t. 

I should feel elated that I do not fear something as inevitable as death but what I do fear is a future I am not mentally or spiritually a part of. In this whole process I have been told to ask God for help because he will answer. I have been told that only he has control over our lives. I know you may believe that too but when I was begging for help, for a sign, when I swore a lifetime of blind devotion to have a couple of more years just to be with my family no one answered. 

“I was told it is Christian to take care of the sick and disabled but what right does a religion have to take away my autonomy for the sake of not breaking sanctimonious rules in a book?”

This is not the first time I screamed for acknowledgement and I doubt it will be my last, but it is only ever the people who love me that answer. It’s funny how people think, it does not cross your mind to just ask. 

I snatched my life from passiveness and took control and for that I am not apologetic. If I have learnt anything from this process and the countless number of people I have encountered it is that you do not have to understand it to agree with it. Through this crazy journey I have met wonderful people who have thanked me for voicing the right to a choice and it makes me sad to think that we can only speak of such things. 

So, if you have made it this far that’s me. 

I am only one of many Maltese citizens who believe that we have progressed enough to have a fundamental human right to our own life. See how much faith we have in this great country? 

I am tired of smiles and small talk that lead to nowhere. I was told it is Christian to take care of the sick and disabled, but what right does a religion have to take away my autonomy for the sake of not breaking sanctimonious rules in a book? If we thrive in diversity then why condemn those who choose life over spirituality? If I do not have the right to my own life then what is the point of rights in the first place? 

Maybe this will never reach you or maybe it will and we will go through the pleasantries of beating around the bush and not making any real change or listening to people like me, people worse than me. Maybe all this will be for nothing. Maybe in years to come when generations swap over and I am long gone you will be the one to help put this on the agenda because the time is right and the country is ready for it. Maybe in years to come you will encourage people to demand a referendum. And when it passes you’ll think of that teenager who wouldn’t shut up about the fundamental right to a choice. 

Maybe then it will all be worth it. 

I know you may not know me but we want the same thing; the right to our own lives, the simple want of a peaceful death surrounded by loved ones.

I know you may put it off until tomorrow to talk about because the time is not right but in truth, the time will never be right to talk about it, so why don’t we start now? 

Malta you are resilient and as a country we have achieved so much. 

I believe in you so please, believe in me. 

If you have an important story to share, write to us on [email protected] and we will help you bring your message across.

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Chris Peregin

Christian is an award-winning journalist and entrepreneur who founded Lovin Malta, a new media company dedicated to creating positive impact in society. He is passionate about justice, public finances and finding ways to build a better future.