"How do you fight perceptions that the disease you are facing makes your life not worth living?"
I came across an article almost a decade ago that perfectly encapsulated my feelings and personal experience. Its title is “They asked me why would I want to live” and it was written by Simon Fitzmaurice, describing his desire to carry on living with Motor Neurone Disease (MND). It feels particularly relevant just now as the value of people’s lives is being questioned – and the priority of some receiving medical treatment over others is being assessed.
Since lockdown measures were introduced, we have seen some reach their conclusion. Whether it’s Toby Young arguing for a cost cap on treatments for an individual or the Welsh GP who encouraged people on the shielded list to fill in “Do Not Resuscitate” forms, there is a minority who have already passed their judgement.
It has been an unsettling time and people I know are deeply concerned. How do you quantify the value of someone’s life, assess their quality of life and prioritise it against someone else’s? How do you fight perceptions that the disease you are facing makes your life not worth living?
Indeed many might not wish to ventilate and they may put that into writing. I was one of them. When I was diagnosed with MND at the age of 29, the thought of living with a ventilator 24/7 filled me with fear. It’s very different, however making a decision about an abstract time in the future. When push came to shove the realities of the situation and my life were clearer and I changed my mind. I wanted to live with every fibre in my body.
That’s only a part of the story though. Just deciding you want to live with a tracheostomy and a ventilator doesn’t mean you will automatically get one. Your doctor has to agree to do it.
Nobody is saying these conversations are easy. There is an undeniable health crisis. But too many people have fought too hard and overcome too much to give up during the current situation.
What have I got that’s worth living for? Simon had already answered that question – “Love for my wife. Love for my kids. Love for my friends, my family. Love for life in general. My love is undimmed, unbowed, unbroken. I want to live.”
About the author
Euan was diagnosed with Motor Neurone Disease in 2003. Since then he has established two charitable organisations, the Euan MacDonald Centre for MND Research (this link will take you away from our website) and Euan’s Guide (this link will take you away from our website), the disabled access review website. Euan was awarded an MBE in 2009 from the Queen for his services to people with MND in Scotland. He has also helped establish SpeakUnique, a company which creates personalised synthetic voices.