Kathleen: "I'm not a burden."

"I'm not a burden." I have Motor Neurone Disease and I oppose Assisted Suicide

My name is Kathleen Rogers. Two years ago, I was diagnosed with Motor Neurone Disease. My disease is a burden, which I must carry. But, I’m not a burden.

 As my Motor Neurone Disease gets progressively worse, more and more people are helping me to carry my burden: from healthcare professionals to my wonderful sisters; from the local hospice palliative care team to good friends and relatives. 

I have to say, the support and care I am receiving is second to none. It is not always easy for me to accept help. I have worked in the caring profession myself and, when I received my diagnosis, was caring full time for my mother who has dementia. Now the carer is being cared for! 

And I am learning to let others do things for me that I can no longer do for myself. At no stage in this process have I been made to feel that I am a burden on anyone. 

Looking back on the couple of years I spent caring for my mother, I think of it as a precious time. It wasn’t always easy but, at no point, did I or any of my siblings regard my mother as a burden. We were glad to help carry her burden as much as we could. Now the shoe is on the other foot, it helps to remember how privileged I felt in being able to care for Mum. In many ways, it was a blessing.

Having a terminal illness is horrendous. Seeing your loved ones worried for you and, perhaps, feeling helpless in the face of such a huge thing is not easy to bear. In relation to the proposed ‘Dying with Dignity’ bill, I understand why individuals in my position might be

tempted to think that ending their lives is a good option. I acknowledge the selfless motive of wanting to avoid placing a burden on others, especially family members or loved ones.

Carrying these difficult feelings is, indeed, another burden on top of the original one. But, I would advise caution. Please don’t be too quick to assume that you are being seen as a burden by others. Please don’t be too quick to deny others the privilege of looking after

you. Please don’t be too quick to write off your time here on earth. Your illness may be a burden, but you are not.

I would be very much afraid that the passing of such a bill might lead others to think of their illness and their care in this way. Once made legal, such sanctioning by the state of the death of a certain section of our population can easily play on the minds of those who are

most sick and vulnerable. It could reinforce the message that they are a burden, and the right thing to do would be to unburden their carers by ending it all. 

As a society, I think we should be able to offer our ill people more. Maybe we just need to have more faith in those who are caring for us that they will continue giving us the love and support we need up till the end. Maybe people like me need to have enough faith to know that, far from being a burden, we are able to enrich the lives of others simply by allowing them to look after us.

So, please think again about the labels that can be put on individuals like myself by others: being a burden, having no quality of life, having no dignity in death. Walk in my shoes and you might think differently!