My name is Sam, I am currently a student at the University of Malta. I have two loving parents, a brother, wonderful best friends and two gorgeous cat babies. I am for the most part completely average, except that by the age of 17, I had already planned my death.
2 years ago I went through the process of being tested for a dominant genetic disease known as Huntington's disease. In short, it is often described as a mixture of ALS, Alzheimer's and Parkinsons. It degenerates the nervous system until nothing is left. And because it is incurable, death can be caused by something as simple as forgetting how to swallow food.
"Imagine [your loved ones] begging you to say something, anything at all... for you to hug them back... Imagine you cannot do any of this, and instead you sit there and watch them break."
To say I was scared of being tested is an understatement, but I went ahead with it anyway, because I had a life ahead of me which I had planned down to a T. My life had never been perfect, but honestly, no one's is. I was not a particularly bad person so in a world defined by good and evil, a God who loves and protects, these things could never happen to me.
I thought I'd been through enough to empathise with the man who died for our sins and in my mind I was untouchable. I walked into the doctor's office pretty cocky, but right away I knew something was not right. Denial really is the first stage of grieving because as I stared at the numbers on paper, and the cross behind the doctor's head, the two did not quite add up.
I had Huntington's disease, and there was no two ways about it.
"What struck me the most was the idea of the person being deemed not quite alive, not quite themselves anymore"
'Why me' was the theme of the day, but my family and I decided to try and make a 'family day' out of it all. We went to the cinema and we cracked highly inappropriate jokes... because life goes on. And though we cried the whole way there, I knew I still had a lot of living in me and this was not the end.
Later that night I began researching and read all kinds of personal experiences with the disease and the thing that stuck with me most was this idea of the person being deemed 'physically living' in their third and final stage of Huntington's but not quite alive, not quite themselves anymore.
Just imagining this brings me to tears. One of my greatest joys in life is making the people around me laugh and smile, but there will come a time when I will not be able to make that happen. I won't be myself.
"As I stared at the numbers on paper, and the cross behind the doctor's head, the two did not quite add up."
Imagine watching your loved ones suffer, imagine them begging you to say something, anything at all, to blink in acknowledgment of their presence, or for you to hug them back... and the whole time you know if you don't, they will never be the same.
Imagine you cannot do any of this and instead you sit there and watch them break, wanting nothing more than to stick their pieces back together and go back to a time where you could reach for them. But there is nothing you can do about it because that's just what incurable is.
You may shudder in thought of this, but I weep in reality of my future. So the next morning after hearing my mother cry herself to sleep, after watching my brother sob in helplessness I decided that I was not helpless. I had a choice. My life is my own and what I do with it is down to me. I could sit around moping or I could get my act into gear and enjoy the time I do have. Multum non multa; life is about the quality you live not the quantity of years you have.
I was not going to allow myself to be a victim of circumstance.
"I was made to feel like [euthanasia] was the choice of the weak and the mentally unstable. I was made to believe that this was selfish."
Although people told me that there was nothing I could do, I refused to accept that. For starters, I was no longer going to waste time, each breath was a gift, everyday an opportunity for adventure, and each person held memories we had yet to share.
Secondly, dying is not glamorous, it's not fun. Sure, it's a natural process of life, but it does not make it any easier. But as years pass we have the ability to make it easier, do we not? I live in an innovative era that allows me to shorten my suffering and of those around me, to go out with a bang and leave behind only happy memories.
I have the ability to leave when I still recognise my own reflection.
For a long time I hid the relief the option of euthanasia gave me, the relief that I would not burden anyone or add to their pain. For a long time I denied that this was an option because I was made to feel like this was the choice of the weak and the mentally unstable. I was made to believe that this was selfish because God gave me a life to live and only He should dictate when I am ready for His 'eternity of bliss'.
"I want to leave this life when I still recognise my own reflection."
The community I live in will not say this but I will. I am not ashamed of not entrusting my fate in someone else's hands. I am not ashamed that I only reached closure when I knew I would not have to suffer an agonising death and if that makes me selfish then so be it. The idea of being stripped of my dignity did not appeal to me because there is no dignity in writhing pain. We are told to take charge of our life but we are condemned when we take charge of our death too?
Some are fortunate enough not to be burdened by this but when you have been given a life sentence, it consumes you. Every happy memory I made was overshadowed by the idea that these will be stripped away when I reach my final stage of Huntington's... because pain sticks with you.
So why would it make sense to define my memory, my life, by years I will not be around to enjoy? When a dog suffers we are humane enough to put it out of its misery, so why should this be any different?
"We are told to take charge of our life but we are condemned when we take charge of our death too?"
Are we so conceited to think that we can pick and choose when we play God and when we believe in God? Because of people who have no experience in being a 17-year-old with a Huntington's diagnosis, my choice of life is prohibited and in order to retain my dignity and save my family and myself a fraction of the pain we have to go through, I have to travel to a place like Switzerland. They believe in having dignity in life... and death.
But Switzerland is not home.
Instead of being at home, in the place that gave me so much love and happiness, I have to seek out places that will allow me to end my suffering sooner rather than later because I live in a place that tells me to 'leave it in the hands of God.'
"I can tell you from personal experience that no amount of help in the world will make me want to prolong my years of dependence and illness."
What I ask of you is this, if you do not agree with those who believe in having a choice - talk to them about it. Educate yourself, walk a mile in their shoes before you ask them to blindly entrust in your God. If you believe that choosing to euthanise is the same mindset as committing suicide then open your mind and read up on policy, because places that offer accompanied suicide only do so for those who are deemed mentally fit and able to make such a difficult decision on their own, as well as face inevitable death, unendurable pain or disability.
The idea is to create a safe environment that will allow both you and your loved ones to let go on your own terms and to prevent suicide (and failed suicide attempts) which leads only to more heartache. It is a long process that involves a series of medical investigations and evaluations so no one is taking this decision lightly. So can you imagine how much a person is suffering to willingly go through more poking and prodding in order to go on their own terms?
"I will not live in fear of my body imprisoning me."
The problem with the society we live in is that no one will talk about this. We follow each other like sheep without truly understanding the context behind euthanasia because as soon as someone mentions it, it is an immediate red card for someone who 'just wants to die' and 'clearly needs help.' I can tell you from personal experience that no amount of help in the world will make me want to prolong my years of dependence and illness.
I love my life more than anything, despite everything that has happened I am lucky enough to have such a wonderful life, filled with love and laughter and I am blessed with incredible people. I truly have the best life, and this is only the beginning, but I love my life enough to know that I never want it to go to waste. I want to be fully present and enjoy every single moment.
I will not live in fear of my body imprisoning me.
I will not spend the last stage of my life worrying if today is the day and if I will be alone when it happens. We are not alone in birth so do not tell me that it is my destiny to be alone in death.