AlzAuthors contributor Deb Bunt, author of Slow Puncture: Living Well With Dementia, guest blogs for us in honor of World Alzheimer’s Month. Deb believes it’s essential that those living with dementia tell their stories while they can, and she offers suggestions on how to get this done in a trio of blog posts exclusively written for AlzAuthors. Here she reports on her interview with Wendy Mitchell and how she tells her story of living with early onset Alzheimer’s via her blog, Which Me Am I Today?, and her book, Somebody I Used to Know, written with the help of Anna Wharton. Last week she shared her discussion with Dr. Jennifer Bute, whose story is told in Dementia From the Inside, written with Louise Morse, and on her blog, Glorious Opportunity. And, in the first of the series, she told her story of working with her good friend Peter Berry to help him tell his Alzheimer’s story in Slow Puncture.
By Deb Bunt
The pen is the tongue of the mind. (Horace)
I have never met Wendy Mitchell in person although, somehow, I feel that I know her, and I imagine that this is an experience which many people share. Hers is almost the go-to name when Young Onset Dementia is mentioned, and through her blog “Which me am I today?”, her book, “Somebody I Used to Know,” and her numerous appearances on the radio and television, Wendy’s voice is certainly being heard all around the globe. And, on a personal level, I feel particularly connected to her as she lent us a little part of her voice by writing the foreword to Peter Berry’s book, “Slow Puncture.”
Recently, I chatted to Wendy about how her book emerged from its catalyst to its full-grown state and why it was so important that others were able to hear her voice.
The Gift of the Ghost Writer
Wendy had been asked many times to write a book, but the publisher neither appreciated the complexity of this nor acknowledged that Wendy was simply unable to do this on her own. Like Peter Berry, she had much to say, but lacked the loudspeaker through which she could say it. She balanced on the precipice of frustration until a solution was found when Anna Wharton emailed her, offering to facilitate the writing of the book.
The two met at King’s Cross station and Wendy instantly and instinctively trusted Anna. She vividly retains the image in her head of Anna’s “beaming smile” and rather flamboyant coat and she knew, in that moment, that this relationship would work. There was a trust between the two women, but also an empathic synergy within the relationship because this was an opportunity for Anna to write a book she wished she’d had when her father was alive.
For Wendy, the memories of her work days remained crystal clear, and she had also kept a blog from the point of diagnosis, but there were, nonetheless, eighteen months of memories missing.
“Everything was blank,” she said. Even now, several years on, I could hear the sadness in her voice at being unable to access those missing months of her life.
Fortunately, at this point, one of her daughters, who was training to be a nurse and who had been living with her, had by chance been keeping a journal for that period. The gaps with the missing information were plugged and gradually the book started to take shape. Anna and Wendy spent every day using WhatsApp or emails to share snippets of the story. Each morning, the two discussed which section they were to work on. Wendy typed the text and emailed it to Anna, who kept it in chronological order. She then worked her magic where Wendy was lacking the experience of a professional author. There was enjoyment, frustration and laughter. As Wendy said (although regretfully she did not elaborate which leaves one to speculate): “Emojis certainly took on a new meaning in our messages!”
Not only was this a perfect writing partnership, an enduring friendship has grown since that first meeting. This fascinated me and I understood exactly how this could happen. The act of writing Peter’s book cemented a burgeoning friendship into something very solid for us, and has been one of dementia’s more endearing consequences.
In Her Own Voice
It was of paramount importance to Wendy that the book be written in her words and that her voice be heard through the print. After all, this was her experience to share and she is pleased that the majority of the book contains her words. True, they were shaped using Anna’s understanding and skill of how to write, but the story was Wendy’s and her voice and experiences exploded onto the world, loudly and forcefully.
Wendy experienced a new direction and purpose by writing this book and, certainly, it was more than just a book. There was a fierce and visceral need to hold a printed copy in her hand. There’s a great image on The Alzheimer’s Society’s website of her holding her book; there is a smile on her face, and to me it seems as if she is clutching her life and her memories in her hands, wistfully, reflectively, before letting them loose on the waiting world.
And so, Wendy’s lived experience of dementia was being shared with others and, whilst this gave her huge pride and a purposeful direction in life, she was also overwhelmed with responsibility. Suddenly she was the recipient of thousands of emails from strangers, the majority of which were positive, and some, quite simply, filled her heart with pure joy. One email in particular, from an eighty-year-old from Hawaii, resonated with her. This stranger told her that she had read the book and was now employing some of the same strategies Wendy used around the home to make her life easier. This was Wendy’s voice in action. It had skipped through Yorkshire, frolicked down south, popped briefly into London, sashayed to the coast, boarded a ship, and journeyed on to the Central Pacific Ocean where it was received with open and grateful arms.
“My words and my story provided opportunities to other people. This was so important to me,” she said.
Trust
Wendy has not read her book in its entirety and this brought up the notion of her implicit trust in Anna’s ability and integrity to reflect her words and thoughts accurately.
“I felt trust for Anna in my heart,” Wendy told me. “I know instinctively if I like someone or not. And I generally have an instant bond with others living with dementia.”
I remember Peter pounding his hand on his chest and saying he stores emotional memories and senses in his heart, and it was touching to hear Wendy echo Peter’s words so fervently.
The whole concept of trust is something which intrigues me. Where does this seemingly intuitive sense of trust come from, given that as we go through life we learn not to trust people so readily? Does this sense get heightened as other abilities fade? I know Peter has absolute confidence in my ability to project his voice for him and, whilst it warms me, it also has the capacity to frighten me as it feels that his faith in me comes with great responsibility.
And, of course, deceit is often the central thread in novels, and television is frequently based around trust being exploited for personal gain. Inevitably, Shakespeare has the ability to sum this up so much better than I: “Love all, trust a few, do wrong to none.” And yet, Wendy and Peter, and Jennifer Bute, have all invested great trust in each of their ghost writers. This is one of the greatest gifts invested in me and it’s one I will always treasure.
Wendy also has great trust in her dementia “playmates” – her word when referring to others living with dementia. It is not a word that everyone likes and Wendy has now learned to use it sparingly, but the word does rather capture her need to mock, perhaps flout, her dementia. She describes her playmates as her second family and she values them hugely. And, curiously, she seems to find a value in her dementia too.
Magic Moments
“I have done so many amazing things since my diagnosis and had so many opportunities. I wouldn’t have done half of these things if I was not living with dementia. I suppose it’s a gift of dementia. I suppose these are my magic moments.”
This phrase was analogous to Jennifer Bute’s description of dementia being her “glorious opportunity” and also brought to my mind Peter’s conviction that his life is fuller now and he has achieved more since diagnosis than prior to it.
Here are three dementia warriors, standing in the eye of the dementia storm, and they are standing as firm as they can. The storm shakes them and, if they stumble, they will clamber back to their feet and shake their fists in defiance at the approaching tempest. They are taking as much as they can from dementia to balance out what it takes from them. It is a battle which requires a steely mind and an ability to look at the glass in its half full state – and to see it as just that: half full.
Like Peter, Jennifer, and many others, Wendy has been able to turn a negative into a positive; she believes that she must do so. Whilst she recognises that her positive attitude is not for everyone, she also wonders if those who live with the condition but are unable to have their glass half full feel hard done by in some way. But for Wendy, the driving need is for positivity as she goes in search of these “magic moments.” She is convinced that this is what has helped her to live alongside the condition.
Working With Television and the Theater
The conversation turned to Wendy’s role in a British medical soap drama. She was asked to input her knowledge and understanding of dementia when the script writers were writing about a character who developed the condition. This, she said, was a “gift that turned sour.” It was, in a way, an instance of her voice only being peripherally heard. The dementia plot in this soap lacked authenticity; the rapidity of the deterioration and then the death of the character did not ring true. This unnecessary early death was partly due to the necessity to “kill the character off” as her contract was ending.
However, this storyline meant that Wendy’s voice was not reflected at all, and she fears it might have done more harm than good – so much so that she backed out half way through as writers changed and little notice was being taken of her feedback to scripts. However, she re-joined when another writer came on board, one who both valued her involvement and her voice. Whilst this couldn’t change the ending, it did impact some of the story line for the good.
Conversely, her involvement in the stage production of “Still Alice” was a much more satisfactory experience. Sharon Small, the actress playing Alice, initially played her as an aging character until Wendy explained that what needed to be reflected was not an “aging process but a cognitive decline,” Wendy was delighted to see how the actress was able to depict this in her portrayal of the role.
Wendy is happy to have been given the opportunity to tell others what it is like to live with Young Onset Dementia. Whilst recognising that projecting her voice into the world required assistance from Anna, you can rest assured that it is Wendy’s voice which comes across loud and clear and which has touched so many thousands of people across the world. It is “trundles” in the countryside and her photos of wildlife (ahh, those ducks, those adorable little ducks!) which she shares on her blog that continue to capture people’s hearts and which sits alongside her very clear message: “If today is a bad day, tomorrow might be better.”
About the Author
Deb Bunt is married with two sons and two grandchildren. She’s retired from working as a family practitioner and living in glorious Suffolk, where her days are spent with friends and family, cycling, drinking coffee, eating cake, trying to play Beethoven on the piano and, above all, trying to perfect the skill of “living in the moment.”
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