Seeing a ghost: writing for people with dementia

Some days, I am a ghostwriter. I don’t work with celebrities or the rich and famous. I work with ordinary people who want to write their memoir for their own pleasure, and to share their accomplishments and family histories with anyone who will listen. This afternoon, I have an appointment with Allan, who is 84 and has dementia, to help him write his book.

I have been working with Allan, a retired surgeon, for a few months. The first time we met, my 11 year-old daughter came along. We walked up to his front door, which was slightly ajar. I knocked cautiously, and then more loudly until out of the corner of my eye I saw a shadow, and the door opened to reveal Allan with his thick, bottle-top glasses and enormous grin. “Aha!” he trilled, “my ghostwriter is here!”

We followed him into his study, past a large, circular wall sculpture made up of dozens of corkscrews in curious shapes and sizes. The room was filled with books, papers, bookshelves and cabinets filled with objects from old surgical blood-letting dishes to Café Royal memorabilia. “Now may I offer you a cup of tea? I have Lady Grey, Earl Grey or proletarian PG Tips.” Daisy thought he was wonderful.

During that first interview, Allan told me his life story. His memories were filled with extraordinary detail and richness. We were probably there for about three hours. To my daughter’s credit, she sat and alternated between reading her book and listening with interest to his stories, until near the end when I started getting little tugs on my sleeve and it was time to go. Allan and I pinpointed the events and themes in his life that would make up the chapters of his book, and then we agreed to meet and cover the themes week-by-week until we had a manuscript to work with.

This is how it goes. We meet, he talks, I guide him and ask him questions and make notes. I capture everything on a digital recorder. I go home, transcribe the interview fully, and then I shape and edit it. He often repeats things week to week, and he’ll tell you himself that he can ramble at length! I don’t mess with his words, unless I need to tighten a story, make sense of something, or do additional research: if there is something particularly interesting historically that adds some colour, I’ll put it in. He’s a man who loves words, trivia and history. I’ve learned so much from this man, from the story of George Lansbury and the Poplar Rates rebellion (did you know an entire town council was jailed for refusing to collect high rates from their constituents? What council would do that now?) to the story of New Orleans jazz coming to London in the 1940s. Allan may not be a “celeb”, but he’s definitely not ordinary.

As time has gone on, Allan has had his difficulties. His wife is dealing with secondary breast cancer. He had shingles, then a minor stroke, then a fall. On his way to the hospital after one calamity he told the ambulance driver, “This can’t be my last journey. I’ve a ghostwriter you know!” Worried that Allan wouldn’t get to see his book in print, I suggested we publish his stories online in a blog format. That way, Allan gets to see his story published chapter by chapter and doesn’t have to wait. He has the potential of an immediate audience (an idea which he loves), and he also gets the multimedia experience that an online format can offer. Songs, sketches, photographs, anything he mentions in his own story can be fleshed out and placed in its historical context. I had the most wonderful time researching the music and writing up his chapter on 1940s jazz.

When I go to Allan’s house today, I will share the jazz chapter online with him. It’s been a while. I suspect he will tell me off for picking the wrong songs, but I know that he will be thrilled to see and hear some of his old buddies singing along with his story. Our progress on the book may be slow, but it doesn’t matter.  I know that just talking about his life cheers him up. Seeing a ghost is doing him a world of good.

Kelly Stevens

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Tattooing: the final creative touch after mastectomy

Ever since I had breast cancer surgery, I have been fascinated by the idea of surgery and reconstruction as art. Down to creating a fake nipple and colouring it with a tattoo, the process is a creative  one. I wrote about my own experience of medical nipple tattooing in my Oncoplastic Fruit blog a while back; it was quite something to see the range of colours at my nurse’s disposal when I had it done – not unlike seeing the range of nail varnishes when having a manicure!

nipple tattoo colour crop Someone recently gave me a copy of Rose, a free French magazine for breast cancer patients. It’s beautifully produced, with ads for luxury brands like Chanel, making it possible to pay for well-researched and meaningful articles, illustrations, and photography. This copy has a comic-book style article about nipple tattooing in it, which stopped me in my tracks.

The images of the tattooist at work are brilliant. It’s like art describing art. You can see at a glance how it works; I instantly recognised the rows of ink, so similar to mine. You can see how the tattooist reassures his client and how pleased she is with the result, which would give confidence to patients who are weighing up whether to have this done or not. I love the idea of sharing knowledge with patients in this visual format, and I wish we could do more of it. It would be a lovely thing if patients were given graphic articles and illustrations like this to make even complicated medical issues more accessible and easy to understand – as long as it’s in the right language of course…

tatoueur de baltimore crop