Twelve years ago, I began a project called Writing for the Future—part of the Family Support program at Cancer Focus Northern Ireland. I wanted to create a way for young parents faced with palliative illness to record memories and collate them in photo journals: not lists of remembering how things need to be done but simple, golden memories and advice for the future; suggestions on who ho to turn to and who to trust; and the sheer, raw emotion of saying goodbye to your children and your family, a chance to at least begin the real conversations that are so often avoided and lost.
Some of these books are written for children who will have no memory of their own of Mum or Dad. One of the first was with a wonderful women called Fiona. She was 37, and leaving three children, all younger than six years old. We sat together over six sessions as she talked and I typed. She spoke of a childhood growing up in Ireland; her siblings, her faith and her utter devotion to her children. In the last session she was already struggling to remain fully aware, but she laughed and said “I have loved the drama of writing!” And she also said: “Why did God give my children life, if I am then to leave?” As I am a humanist, I couldn’t speak from a religious perspective, but I searched for words that would bring her comfort, and said, “You were to bring them here.” She breathed a sigh of relief and said: “Of course.”
Dying, she still felt she was a part of her children’s future. Those children lost their Mum a decade ago, but with the books, they carry her forward. And her parents still keep the books in the front room for everyone to see.
Listening to a fading voice
It’s not always as easy or as straightforward as with Fiona. Sometimes it is acutely painful. With some, I mostly remember sitting close, so close, at a hospital bed, listening to a fading voice. Sometimes, the books don’t get written at all: people dream of writing them, but they run out of time, or write half the book and give up; or their bodies give up.
I can’t truly comprehend what it is like to be dying but I can comprehend some of the panic, loss and grief. When I began this work, I wanted to empower people who were dying to have some say in their children’s future, to live on after they are gone. I worked with a wonderful man called Neil—oh my goodness, he had a lot of words and wonderful stories! We were a few years on from Fiona, and I had decided to use a dictaphone. (Often people don’t the recordings kept and are adamant their voices are not to be heard, but a few do want them shared.) He talked, I listened, and then I transcribed—for hours. He was incredibly positive in his approach, and he was fully aware he was going to die soon. He made sure to write in his book that how kind his daughter, Melissa, was. She truly is kind, and I still know her 7 years on. She speaks of that book with love and recalls those words with a smile. She says, “I love my book and I love hearing him.” Completing the books can often be more positive than painful—they create a voice that keeps traveling forward.
When we transcribe the books, we use the exact words that are said, we keep the northern Irish accent alive within the memories. I wrote with a woman called Marie. I would to make myself tea in her kitchen and then curl up with her dog and listen. I remember saying goodbye to Marie. When you write with someone you become part of their story and their story is precious. She was so sick, I sat next to her and through silent tears I said “I wish we had met in the mountains.” She said “Yes, just out for a walk on wonderful day.” As I drove away, I knew I would never see her again, but her story would move forward and travel with me. She shared strength and kindness. A quote I hold dear from Marie’s book was: “I value love. That would be the biggest thing; love of family, love of people. Love is between us all.”
Tipping the cap at his own funeral
People might think the challenge of this work is in the presence of death and dying, but sometimes the greater challenge is in what people say—especially when they choose to bequeath words and ideas that go against my own beliefs. One parent wrote of how money, and being rich, was very important. I worried about greed—but it’s not my story. Another wrote that the children were to stay within a certain faith and there was to be no choice; some parents impart rigid thoughts on sexuality. We try not to judge or steer but help people reflect. We help them imagine how the words will sound in the future; do they really want the fact they can’t stand their mother in law written forever more?
We do give some guidance: we encourage saying what they are really proud of, places to visit after they are gone, what were they like in school and their thoughts on marriage and love. We talk about death, we talk of love, we often laugh so much that we have to stop recording. With one lady, Lorna, we forgot to turn the TV off and through all the recordings you can hear a chat show in the background. Her daughters say that when they read their books it’s as if their mother is speaking to them and in the first year after her death, it guided them on how to live without her.
The books also answer some questions about identity, so important for who we are and who we become. Children love to read the sections on how their parents met, what were their Mums or Dads first thoughts when a child was born. The funny stories too, the times their parents made mistakes.
One gentleman, Bill, wanted the whole thing filmed. We did hours of filming his thoughts and wishes, and then he wanted to be filmed reading his own eulogy, in the very church where he knew his funeral would be held. The minister was a little unsure, but Bill was determined, and so we filmed his eulogy with him standing at the front. He died a few months later, and then, at the funeral, the projector screen came down and he was standing there, telling the congregation to take care of his family. At the end he tipped his cap and walked off, saying: “That’s all, folks!” His courage was wonderful, showing that with each piece of planning and writing, the person can feel they’ve gained an element of control over a situation where all control is lost.
The truth of the conversation
I adore this work. I adore recording, and I love the truth of the conversation. I think of myself and my team as story keepers. We carry forward people’s hopes, dreams and wishes. We carry forward their past and the future they wished for themselves and their families, to be recorded and remembered. It’s easy to assume the work we do is really for the living; but it can be tremendously empowering, comforting and reassuring for the dying, too. Many people’s worst fear on dying is that they will be forgotten.
We no longer live in a world of letter-writing. Thoughts and emotions can get lost in social media posts and text messages, which are often all the written records we have of so many lives now. Memories fade and become entangled in other thoughts, and either way we often don’t really tell people why we love them.
But the books remain.
Some are treasured, and displayed in pride of place in people’s homes. Some have to be printed in multiple copies—in one case, because the person’s child was using the book for a pillow and wouldn’t part with it even for a moment. Some aren’t claimed until years later, when families have come to terms with the loss. And some still sit on my shelf, never collected: families shy away from the words and the pain, but I heard them—and I keep them. I heard their stories and I carry them forward.
Rachel Smith is a writer, drama therapist and humanist funeral celebrant living in Belfast, Northern Ireland. She can be found tweeting at @Rachelsmithni.
The views expressed in this article are the author’s own.
