Terminal illness has robbed me of a future, so I want full control of when and how I die

Motor neurone disease is killing me.

It has taken my speech, my ability to swallow, and is now robbing me of my breathing. You may be surprised to see me walking around, or doing a bit of gardening, or cooking – but make no mistake, I am dying. 

I was given the diagnosis in October 2019 at the age of 68. I was shattered.

All my dreams of time with my husband, children and grandchildren; of watching the little ones grow up and waiting to see who they become, of seeing my middle daughter awarded her PhD, of sitting in my garden as the years pass with a glass of wine and good friends.

All that was taken from me, by one single sentence: ‘I am afraid you have MND.’

The condition has rapidly progressed. There is no predictable pattern to the development of the disease, but what is certain is that losing swallowing and breathing will kill me, far more rapidly.

The recent estimate is that I probably have six to nine months left.

I want to be able to choose how and when I die, with the support of an assisted dying law.

A second lockdown here and in Europe, with restrictions on travel, has now made this option harder – even if Matt Hancock has said that assisted dying travel is permitted.

Unsurprisingly, the prospect of travelling alone to end my life has little appeal, and would require tremendous desperation.

It feels like the only option left for me at the minute is to let nature take its course, and hope that there will be adequate, timely care and a good cocktail of drugs to make the exit tolerably comfortable.

It’s not something that’s guaranteed and is a terrifying prospect. It does nothing to put my mind at rest or enhance what little time I have left. 

Alternatively, in an attempt to maintain control over my final days, there is the option of refusing my tube ‘feed’ and water when I find my condition intolerable. 

It would undoubtedly, over time, achieve the desired result but it is appalling that anyone should have to resort to such lengths, especially in a country such as this where human rights and compassion are valued so highly. 

Those who are sceptical of a change in the law often cite concern for the vulnerable. But I would ask them, how exactly are the vulnerable being protected at the moment?

Terminally ill people – arguably some of the most vulnerable people in society – are being forced into deaths at their own hand at home, with no safeguards in place and investigations into any suspected wrongdoing only taking place after someone has died. 

An assisted dying law, however, would provide far more transparency, safeguards and accountability than there currently is.

The option would be open to anyone to those who are terminally ill, in their final months of life, in full possession of their mental faculties and making a clear, settled decision of their own free will.

Two independent doctors and a high court judge would have to sign off on the request, and any suspected mental ill health, abuse or coercion could be identified from the start and addressed.

If the request is granted, the individual would take the medication themselves at a time and place of their choosing (or indeed, not at all) meaning they remain in control throughout. 

If it was not possible to craft safe laws, why would it be the case that increasingly across the world, jurisdictions are introducing legislation in favour of assisted dying? Where it has been established for many years the system is providing much-needed comfort to dying people.

It is long overdue that the UK joins the increasing number of enlightened countries around the world. 

I find it extraordinary that any person would consider denying the choice to others. What if it was their spouse, parent, child, friend, or even themselves, who had a terminal illness and wanted to have control of when they would die?

Why is it that we give better protection to our animals than we do our fellow humans? It is a criminal offence to permit any unnecessary suffering or pain to an animal, quite rightly. 

I try to enjoy what every day has to offer, and I am lucky enough to live in a beautiful location. I try to see my family and close friends as much as I can, within the limits of feeling constantly tired, and the restrictions imposed by Covid-19

I count myself lucky to be 69; many people develop MND much younger.  

But life has been difficult since my diagnosis. There is no ‘getting used to’ this because very soon something else will go wrong. The goal posts keep being moved. And there is the knowledge, all the time, that things will only ever get worse… until one day, you die. 

Add to that the restrictions imposed by coronavirus and you begin to get the picture of how life is for any terminally ill person.

2020/21 is a particularly bad time to be in this situation; forget achieving a bucket list, forget spending extended time with family and friends. It is not a joyful time.

An assisted dying law would make all of this easier to deal with – to not have to worry about a traumatic or protracted death and to know I would be able to say goodbye, peacefully, when the time feels right for me.