real life

'I have terminal cancer and this is what a movie taught me about dying with dignity.'

This afternoon my husband and I had a good old fashioned cry – I was more a blubbering mess and Serge was more controlled with the number of tears let loose.

This afternoon we went to see ‘Me Before You’ at the cinema. Serge had no idea what he was in for, he simply heard the word ‘movies’ and decided that he must accompany me. However, I had planned to see ‘Me Before You’ since I heard that it was being made into a movie.

I had read the book by Jojo Moyes twice – before my cancer diagnosis and after. It is a bit of an epiphany writing that because it is quite right, my life is now defined by life before my terminal diagnosis and life since – life since living knowing that I am dying.

Before I delve into the movie and my thoughts, I want to acknowledge the uproar that has surrounded this movie. There has been a lot of backlash from the disability advocates and groups regarding the representation of people with disabilities in the film. As someone that has worked with people with disabilities, and specifically in the area of improved accessibility, I acknowledge the upset.

However, I am writing this from the perspective of someone with terminal cancer. I am writing this as a 24 year old, who knows she is dying, who has actively thought about whether assisted suicide or ‘dying with dignity’ would be an option I would consider if it were legal in Australia.

dying with dignity the fault in our stars
'My journey with cancer and our love story is so intertwined.' Image via 20th Century Fox.

I read 'Me Before You' when it was first published in 2012. I was 21 and a little naïve. Although it was a great story of love, I didn’t understand why someone who was ‘only a quadriplegic’ would choose to end his life. How unbelievably selfish of him to do this to his family and his new love (aren’t they supposed to live happily ever after, it’s a romance novel after all)?!

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At the end of last year I re-read ‘Me Before You’ ahead of the release of the sequel, ‘After You’. In the three and a bit years since a lot has happened.

In 2013 I was diagnosed with Stage 4 Melanoma, a terminal diagnosis, at the age of 22. I had only just met my now husband, Serge. Serge has never known me without cancer. He married someone who he wouldn’t have the chance to grow old with, instead only hope for a year at a time. My journey with cancer and our love story is so intertwined.

The second time I read it, I was in an extremely different headspace.

In January 2014, I had been given three months to live after my initial treatment failed. I had met with palliative care and planned my death. I wanted to be in control. I wanted to make sure that I could die with as much dignity as possible. I wanted to die in my family home, in the arms of my husband and surrounded by my family.

Watch Andrew Denton discuss dying with dignity on Q&A. Post continues after video...

Video via ABC

I had written on my blog Dear Melanoma, as well as interviewed for Cleo, about the ‘Death with Dignity Act’ in the USA. I totally understood why people, in the few American States it was legal, would choose to ‘die with dignity’ and end their life. As someone with terminal cancer I don’t want to spend my last weeks or days in pain or in and out of consciousness from the pain killers, unable to say good bye to my husband, family and friends. When all the treatment that is prolonging my life fails, I would rather choose a time to end my suffering and die the way I described above. Why prolong the inevitable?

In saying this, this is not an option in Australia so it is easy to say that it is something I would choose, but I honestly don’t know if I would follow through. At present, I am happy to have the conversation and I understand the reasoning behind people’s, in a similar situation to myself, decision to end their life.

When reading the book the second time I was (somewhat) more compassionate for Will, the character who is a quadriplegic, and his choices to go to a centre for assisted suicide in Switzerland.

At first, I was angry with Will. I was angry that someone who could live for years or decades, have a family, have a career and participate in society could be selfish enough to not just get some help and learn to ‘get on with life’. This sounds harsh, but I was a 24 year old reading this aware of my mortality. I couldn’t just ‘deal’ with my cancer and get on with life. My cancer wasn’t going anywhere. I could learn to enjoy life in the meantime, but that was it.

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But, as the book went on and as I watched the movie today, I sat back and asked myself who am I to judge?

Like me, Will knew how he wanted to die. But, he also knew how he wanted to live. He knew how he wanted to be remembered.

dying with dignity me before you
'I wanted to be in control. I wanted to make sure that I could die with as much dignity as possible.' Image via Warner Bros.

I think this is best highlighted in the last moments of the movie, especially in the letter he left for Lou, his carer who he fell in love with. He told her to live boldly and to simply just live.

For Will, he didn’t feel like he could live out these sentiments after becoming a quadriplegic. He could not find the strength to go on with life when his life had been altered so drastically.

He also made it clear that he didn’t want to be a burden. He didn’t want the illnesses and complications to define his life. He didn’t want to be dependent. He also was aware that the complications of his disability could lead to an early and painful death. In a life where he has little control, he could control how he wished to die.

And what brought me to blubbering tears was the moment that Lou moved to lay beside him in bed and he asked for his parents to come in for his final moments.

As I rested my head on my husband’s shoulder in the cinema I thought this is what I want. This doesn’t mean that I want to go down the path of assisted suicide, but I hope for a peaceful death. The image of him and Lou is exactly what I wish for.

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Will, a fictional character, and I have totally different stories. I am definitely not denying this. Maybe Will could have received greater support to help him see that there is life after his accident.

dying with dignity me before you
"I left this movie blubbering, but with the wisdom of Will to ‘just live’ and ‘live boldly’." Image via Warner Bros.

Just because I am compassionate of the decision made by this character and understand he just couldn’t live this life, I am in two minds whether I believe that someone with this type of disability should be allowed to end their life. Similarly, I don’t know if terminal cancer patients should be allowed to either.

This is not a post advocating for assisted suicide. It is a post about a movie that brings to light a very important topic of euthanasia, assisted suicide, and death with dignity (and what else you would like to call it). I am glad that I am not the experts that choose whether this should be legal or not and who it should be legal for... As humans, we do not talk about death enough.

I left this movie blubbering, but with the wisdom of Will to ‘just live’ and ‘live boldly’,

I know how I want to live my life.

I know how I want to be remembered.

And, I am comfortable in saying that I know how I want to die. I can only hope that when the time comes I can have what I want.

Emma Betts is 24. She’s a wife, a daughter, a sister, a crazy dog-lady, a lover of pavlova, a former international aid and development worker, and current writer/blogger/advocate. She also has terminal melanoma and writes a blog called Dear Melanoma.

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