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Saturday, 18 January 2014

Why is death a taboo?

Why is death such a taboo? It's the only thing guaranteed in life. Everyone knows they will die at some point or another. So why do we shy away from it? Whatever your beliefs, it will happen. Some people die before they're born, others die after a long, fulfilling life. The rest of us fit in somewhere in between. 



Not many of us actually want to die. We might want the suffering to end, the pain to stop, for things to change; but when it comes down to it, very few of us actually want our lives to end. Dying is not a sin nor necessarily a bad thing. Why is it treated as so? Death should be as important as birth; there should be more emphasis placed on a good death as is placed on a good birth. I wonder if as much funding goes into death and dying as goes into bringing life into this world, when most hospices receive little-to-no funding from the government? 


We need to talk about death. We need to make our wishes known, discuss things like organ donation, what measures you want to be taken to save your life, whether you'd want to be kept alive by machines and what you want to happen after your death. We often don't talk about death until we are confronted by it; by a cancer, a terminal illness or life limiting diagnosis. The same went for me. I never thought about death until we were told that my life will be limited. I was terrified of dying, mind you I still am, but I know those around me will endeavour to make my death as peaceful and painless as possible. We've done my end of life plan, and we have talked many times about what I want. I've started writing down how I'd like my funeral to be, as I want it to be a celebration of my life. Partly I want to do it because it gives me a feeling of control. I struggle with the lack of control in my life, so the things I can control are very precious. The other reason I want to do it is because I want to reduce the stress on my family after I die; they don't have to think too much about what to do because they will know what I would like. As I said I like the things I can control; though I can't control my death, I certainly can make plans and make my wishes known. 


I often wonder what will happen when I die. Will it be peaceful, will it be painful, will I be scared, will the people I want be with me, will I be at peace with the fact I am dying? There's so much to think and worry about. I am a worrier; always have been, always will be. I'm always worried about something. I worry about leaving my family and friends behind. How will they cope? Especially my mum and my sister. My mum has given up her life to keep me alive; what will she do when I'm no longer here? How will she cope without our lovely chats, walking the dog together and the laughter we share; laughter at times when most wouldn't know how to? How will Vicky continue with her life knowing she won't be able to share the highs and lows of life with her sister? Knowing I might not see her get married, meet her children or be able to share special moments together? Who will miss me? Will anything be different because of me? Will my life have meant something? One of my biggest fears is that nothing will come out of my life; nothing will be different, better even, because of me. Everyone wants their life to mean something. Will I be lucky enough to have made an impact on the world? I hope so. My goal in life is to make a difference, something that I seem to be on the way to doing, but I want the impact to be as big and as good as it can. I don't want to be famous; I don't necessarily want people to know who I am and know what I did. I just want something to be different because of me. This extends to my wish for my organs to be donated if they can. Statistically you're more likely to need an organ than to be able to donate, and the same applies to me; I will probably need a bowel transplant at some point in the future, and I probably won't be able to donate my organs due to my conditions etc., but I want my organs and tissues to be donated where possible. 


My mum and I have had to have some tough conversations; conversations no parent should have with their child. We have regular, hard discussions with my hospice nurse too. We talk about trivial things also, but many a night do we spend discussing serious, some heartbreaking, subjects. Subjects about life and death. We talk about my fears and my feelings, and occasionally we cry; though neither of us are criers. My mum has to watch me suffer day in, day out, see me reach some terrible lows and watch me deteriorate, losing more and more function as time goes on. She will most likely watch life leave me altogether; watch me breathe my last breath and slip away. It's supposed to be the other way round. No parent should have to bury their child. 

My mum, my sister and I in 2011
People seem to have such a fear when the words "hospice" or "palliative" are used. They immediately think death and dying; but it's so much more than that. It's about quality of life,  symptom control, living well, laughter, fun and yes, also death. It's about your interests, your hobbies, achieving what you'd like to and being able to live for however long you have left. It's not about how long you've got; it's about how much you can fit into that time. You have to live quickly while you're dying. If you feel well enough: great, then do something. If you're not feeling so well: take it easy and save your energy for another time.  Your priorities change. When time isn't on your side it's not about the latest gadgets, having the nicest house or impressing your friends, it's about getting all that you can out of life. It's the little things that mean the most. The smell after it rains; watching the sun rise or set; seeing the sea; listening to your family and friends talk and laugh; decorating the tree at Christmas; hugs; being able to taste and eat food; anything that is usually trivial and things that we take for granted. You savour every moment you get. 

My hospice nurse from The J's Hospice, Bev
The word palliative is somewhat comforting for me; it means I don't have to explain my pain or justify myself all the time, it means that someone will listen, it means my quality of life - rather than the length of my life - will be of the utmost importance. It means living well, relief from symptoms and reassurance. Palliative care is a word associated with dying, when in fact it couldn't be more opposite. It's about living well and symptom control in life and in death, not just about death itself. 



Hospice has an even worse association with death than palliative care. Palliative care is for the dying, whereas hospices are where people go to die. However, they are also so much more than that. When I think of the word hospice, death is low down on my list. If you know anything about hospices, you'll know that they're not just a load of death beds. They help to improve the quality of your life, get on top of your symptoms, support your family, offer respite to give carers a break, can give complimentary therapies, be a step between hospital and home, AND can be a place to go at the end of your life for those who cannot be treated at home and those that do not want to die at home. The words laughter, love, fun, support, happiness, care, quality, family and comfort come to mind. I want to break the negative associations with hospices and palliative care. People need to realise they are not just about death, they're about living well in life and in death. 


So be grateful for every day, make the most of it, make your wishes known and sign the organ donor register today rather than getting round to it another time. Nobody knows when they’re going to die, so do it today, not tomorrow, as tomorrow might not come. 


Related links

http://www.organdonation.nhs.uk
















http://www.thejshospice.org.uk 

http://www.togetherforshortlives.org.uk



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.
View all posts by Lucy →

9 comments:

  1. Lucy, you don't need to worry about having not left your mark on this world....you are an inspiration to us all. Beautifully written....have you thought about trying to get your writing published? Love as always to you all...Nicci Hazlem xxx

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    1. That is my goal, to have some of my work, and/or a book published. Thank you xxxx

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  2. Lucy, you sure have made a mark in this world. Touching so many lives and bringing awareness of young persons with serious illness. Thank you, you are always in my thoughts and my prayers. Love to you, your Mom & precious Molly.
    Carol Sutphin

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  3. Lucy never fear that you haven't made a difference because you have already done more than many with your writing and raising awareness of your disease. You continue to educate as well as inspire with your courage Take care and as always I'm sending you warm healing thoughts

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  4. Lucy you are a true inspiration. Many a long life has been lived with no (or worse, negative) impact made on others. Your positive stoicism has touched me and I am sure, many others. Love to you, Mum & Vicky, Julie Wiseman xxxxx

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  5. Lucy, you asked "Will I be frightened? Will I be at peace with the fact that I am dying?" Of course, I don't know the answer, but I suspect you will make peace with the idea. My Dad died of cancer. Towards the end, he was so calm and so at peace. He was not an especially religious man, but his situation caused him to find God and peace.

    As for making a mark - leaving something behind - you have done that already my dear. For all the people who follow Lucy's Light and Molly, dog with a blog, have been deeply touched. You have made me think differently about many things and I suspect you have made many people pause and evaluate their life, their choices, and their actions. I cannot begin to tell you how proud I am of you, and I don't even know you.

    Thank you, for sharing, and more importantly, for being you. Gentle hugs and much love to you, Mama Kate and sweet Molly.

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  6. Lucy..beautifully written. So much thought and inspiration all in one blog. I have only known you for a short while and you have been an inspiration to me. Your courage, your fortitude,your positivity, your humility, your caring and your love shine out like a beacon of hope. You have made a difference and I am very sure you will continue to do so. Love to you,your wonderful Mum and your family , not forgetting the gorgeous Miss Molly. XX

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  7. Lucy you are such an exceptional lady and the most besutiful and couragous cousin I have ever had , your struggle in life has given so many people hope and strength and some days I don't know how you and auntie kate cope, it is so hard fir us sitting on the side line knowing there is nothing we can do but pray, I can only pray that when your time on earth is over nan will be there so you are not alone or scared on the other side, and to give us all the strength we need to come to terms with the lose of such an intelligent and outstanding person who clearly does not deserve all the pain and suffering that you are going through..you were such a happy child all them fun times at center parcs I will never forget them and I hope what you are doing now will continue and make such a big impact on the world love you all loads so much keep being strong and fight everyone who dashes your hopes and dreams you are one of a kind the mould was broke after making you and there will never be another its a pleasure to be your family xxxxxx

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  8. You are a role mode. I admire you and think about you a lot since i started following Molly's blog. I also think you are a great writer. Hope you will be ok. love, r

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