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Sunday, 17 May 2015

Dying Matters - Talk, Plan, Live


It's Dying Matters Awareness Week (18-24th May 2015). This year’s theme is Talk, Plan, Live. This is my way of showing support and encouraging people to make plans for when they die. 
Knowing you will die earlier than normal, for some people like me, is something the vast majority of us are scared of, so we don’t think about it and face facts. But why? Dying is something we all have in common; in life, it’s the only guarantee. I will die. You will die. We all will die. So why don’t we talk about it? As a society we have a huge emphasis on birth, there are nurses and doctors specifically trained to deliver and care for babies, a whole industry specifically for birth and babies, there are lots of charities and support groups for pregnancy, birth and babies, it gets a lot of media attention, and it is celebrated; but why don’t we place the same emphasis on dying? Talking about birth is not a taboo, so why should death be one? It's not the most inviting topic, talking about something that some of us are frightened of, or just don’t want to talk about, but that doesn't mean we should ignore it and put it to the back of our minds. Parents spend the whole pregnancy planning for their baby, paying particular attention to the birth, family finances, baby-proofing the property etc., including putting their wishes down on paper in a birth plan. Why don't we do the same when it comes to the end of our lives? Why do we wait until we're sick, or even terminally ill, before we face up to death and make all the necessary documents and arrangements? 


I’m not saying death should be a dinner table topic or pint at the pub subject, or something that is discussed every day. However I want people to open up to their loved ones, let them know your wishes, to put everything in place, draw up a will and a document of your wishes or end of life plan. Also, join the organ donor register now if you want your organs to be donated. Think about death now rather than leaving it till you’re ill or in the final stages of life. It takes the worry out of the situation. You are then free to live your life. You can change the plans whenever, or how often, you like or need to. 


Doing my end of life plan was difficult at first. How do you think about your death, and put all your wishes down on paper? How do you talk about your intimate wishes with loved ones and/or a health professional? It’s not a pleasant topic. However, at the same time, it was a relief that my wishes were known and down in writing, a relief that my family know my wishes should they ever have to make decisions on my behalf, and a relief that my hospice nurse knows my wishes and she can send or convey them to another professional. Having a life-threatening and life-limiting illness means you have to confront death head on. You are forced to think about it. I will admit, I’m terrified of dying. What frightens me most is that I will be in a lot of pain, but palliative care in the UK today can be very effective. Plus I just don't want to die, not unless my suffering becomes intolerable. My ability to talk about my own death may seem like I'm totally at peace with it but I'm not. Maybe I will accept it over time, but right now all I want is to keep fighting to stay alive. However when the time comes, whenever that may be, I hope I will be accepting or even welcoming, and I would like to think someone's life can be saved or enhanced through my organs or tissues. If not, there's always medical research or training. 


Are you an organ donor? If you aren’t but want to be, join now (click here). I am an organ donor, despite it being highly unlikely that many, if any, of my organs will be suitable enough for transplant or for my body to be used for medical research. On average three people die every day waiting for a transplant. Organ donation saves and changes lives. 

Talking about death is hard, especially if you’re scared or would rather not talk about it. I’m not saying I want people to talk about death on a regular basis, but talk to your loved ones and make all the necessary arrangements. Do it now, as anything can happen. 

You may say #YOLO, but don’t forget #YODO (You Only Die Once) too.


To learn more about Dying Matters go to their website here 



About Lucy Watts MBE


Lucy is a disabled 22 year old young lady with life-limiting complications of Ehlers-Danlos Syndrome. She writes and speaks for a number of charities and runs this blog. She is an Ambassador for Together for Short Lives and Dreams Come True, Trustee for the Pseudo Obstruction Research Trust and is the first Youth Ambassador for the International Children's Palliative Care Network, also working with charities such as Scope and the Council for Disabled Children as well as Association for Young People's Health via the Young People's Health Partnership, the Children's Health and Wellbeing Forum and the Children and Young People's Health Outcomes Forum. Lucy was appointed MBE in the Queen's New Year Honours 2016 for her Services to Young People with Disabilities.
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1 comment:

  1. Had a similar chat like this at uni, talked about planning for our own funerals, which I didn't take serious. Wanted the tune for my funeral to be, Another One Bites The Dust.

    ReplyDelete

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