Writing For The Future: Recording Conversations At The End Of Life


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It is my great pleasure to introduce you to today’s guest writer Rachel Smith. Rachel is the family service co-ordinator for Cancer  Focus Northern Ireland.  Before reading Rachel’s guest post on the impact on children when a significant adult has cancer, please take some time to watch her inspiring TEDX talk: Writing for the future — recording conversations at the end of life.

The family support service started in Cancer  Focus Northern Ireland about 7 years ago. It was realised that there was a lack in services  for families where an adult had cancer and Cancer Focus wanted to look at the impact on children when a significant adult has cancer. I was extremely lucky to get the post and started researching what was needed.  I spoke  to families affected by cancer, children and adults and asked what they felt was lacking; and what was asked for was one to one support and groups for the whole family.  I was lucky enough to go to America and train with the Childrens Treehouse Foundation in The CLIMB program which stands for ‘children’s lives include moments of bravery’. This is a 6 week program for primary school aged children looking at what cancer is through arts and drama.

As my experience has grown through meeting families, I have identified  more gaps.  I have written two children’s books, based on the stories of children I have met through the service . One is called “ Who Will Do My Hair “ the other “ Who Will Cut the Grass”. Both these stories look at what happens when  a parent dies and are written for young children; looking at the practicalities of loss and also the simple questions that young children need the answers for.  As part of the project we have developed ‘writing for the future’ and in September 2014 I completed a TEDx talk on this subject.

I have always felt honest conversations are important and that telling the truth to children or to relatives is really important . When the prognosis might not be  positive, my experience is, people feel they have no control and also there is a desperate sadness that they have no say in the child’s future or that they will be forgotten,  So I began to devise a working system about writing and recording for the future.  I sit with my Dictaphone or video camera and interview people, I ask questions such as what makes you proud, what are your values in life, what are your family traditions etc. These are recorded with pictures and made into a book that is then given to the family, I was finding that often people wanted to write but the overwhelming emotion of trying to do this alone was too much.  So we buddy them, we hear their wishes, dreams and hopes. We listen and record them for the future. We create books that are lasting memories for the families, but also empower the individual to feel they have control. For very young children it is a memory of a parent and confirmation and assurance that the parent loved them wanted them and dreamed for them.

I want everyone to have an opportunity to write. By talking about a future without us does not will us into death. I explain it to people that it is like insurance. You don’t buy house insurance because your house will burn down you buy it in case of an emergency.

On a personal  level I feel  I am extremely lucky to have this opportunity to listen to peoples’ stories and to be the keeper and the carrier of people’s dreams and wishes. I feel so honoured to be allowed into peoples’ lives when time is so very precious.  It changes my perspective on the world . Time and time again the young parents I work with say that they have been so lucky that they have no regrets, that their lives have been amazing. It humbles me to feel lucky for what I have.

Contact Rachel for further information about writing for the future, the family service, or Cancer Focus Northern Ireland.