There are two small and beautiful books in the world that are connected and I want to tell you how.
The first is The Diving-Bell and the Butterfly. After reading this slender memoir it was one of the few times I resolved to write to the author and tell them the impact it had on me. But as I handled the book reading all its background and detail I noticed that Jean-Dominique Bauby, the author, had died. I cried. I also felt the mixed and strange emotions around trying to understand and console myself about death, that Bauby may have found peace. And I was so glad he had managed to live and struggle that long and write the book.
Bauby wrote his memoir after a stroke, a stroke of the magnitude that in the past would have led very quickly to death. He survived for a while, but with Locked in Syndrome.His physicians and carers did not know his mind was right at first, that he perceived everything, that he just could not communicate, for quite some time. But eventually they did find out.
He wrote a book in his mind without the freedom many of us have to make notes, to refer back, to record and recast as we write. His was an act of memory, of practice and refining. (I can’t remember an edit I have made a few seconds after I have made the decision, so I am in awe.) He wrote with a scribe by his bed responding to an alphabet offered to him, blinking his left eyelid to indicate letters to spell out words.
His book is very worldly, he was an editor of Elle, he had many advantages in writing that book, his education, his work, his support, his connections, his culture, his medical care; but his determination and grappling with truth is compelling nonetheless. And as in much of great literature it gives the reader an idea of an experience most likely beyond their own, while we can also relate to it. It is an exquisite memoir. I regularly referred to it in lectures while teaching creative writing. Students would talk to me about it afterwards. It is a story about someone with a need to write and keep writing against great difficulties. But it is also just a story of a life.
I kept telling my friend and colleague Jenni Heckendorf (in my role as artist collaborator) as I read The Diving-Bell and the Butterfly out loud to her, this book has a twist. But I realised while reading it at her dining room/meeting table over many sessions that it didn’t really. In my earlier readings I was struck by the revelation of Bauby’s infidelity and that his wife and children stood by him after the stroke. Each re-reading of a book casts it differently. I can’t even tell you what version appeared to me as I read it to Jenni. I was anxious while reading it out loud that I stumbled over pronouncing French place names which had before been quietly imagined by my inner reading voice. I was also desperately hoping this book connected with Jenni, that she enjoyed it, that it was worth her time. She seemed to enjoy it. We read it, for me, quite slowly. It was a pleasant Tuesday afternoon activity. Jenni kept her eye on the clock as her day is necessarily very organised. I imagine she was also keeping in touch with her energy levels.
She told me later that she thought her condition, Cerebral Palsy, the effect it has on her, is akin to Locked-In Syndrome in some ways. I love matching people with the right books. I felt chuffed. I think it showed Jenni that memoir though it contains much of a life can be short, and that there is nothing wrong with short chapters, in some ways the reader savours the words even more.
The second book is of course Jenni Heckendorf’s memoir Through the Years published this year by Ginninderra Press. Jenni wrote it with eye-gaze control technology, where a camera tracks eye movements to control a mouse on a computer screen. Through Belconnen Arts Centre (BAC) with the support of the Australia Council, Robin Davidson, Emily Beergah and I worked as artist collaborators with Jenni as editors and mentors to help bring her memoir to the next stage. Ann McMahon of BAC knew of Jenni’s memoir project through connecting with her over Jenni’s photographic work (which appears on the cover of her memoir). Jenni joined the IGNITE Creatives group co-ordinated by Ann McMahon and that is how I got involved.
So Jenni Heckendorf’s memoir is here. It is published (just before Christmas – hint hint.) Through the Years is being launched this Tuesday 3 December at Harry Hartog Bookseller at ANU 5.30pm. It is the International Day of the Disabled Person. Here is your invitation if you are in Canberra or nearby.
Professor Donna Lee Brien, Central Queensland University, writes ‘This beautifully written memoir by Jenni Heckendorf reveals a woman with firm opinions, a warm sense of family and a keen sense of her own value. She has also lived with cerebral palsy her whole life. A must-read for anyone who has ever doubted the indomitability of the human spirit.’
Jenni captures the innocence of growing up in Through the Years. She captures family and institutional life. But primarily, for me, it is a love story. It also provides a history of disability during her life from the point of view of a person living with a disability in Australia at that time.
Jenni and I are a similar age, and we both grew up in Sydney. We watched the same TV shows, played similar games, know similar places, and many of the patterns of family life of that time she so beautifully evokes I remember as well. And like Jenni I moved to Canberra and have lived a significant amount of time here. We connect. And you will too. To a life well lived.
In my mind The Diving-Bell and the Butterfly will always be entwined with Through the Years. I have seen Jenni’s Japanese Maple outside her office window that spoke to her of seasons and beauty and working beside her husband. I will imagine it while reading her memoir again.
I think of the French man and the Australian woman connected through writing and literature and the determination of self reflection and what they have given us.
On a personal note, when I returned to the project after dissapearing from a debilitating episode of depression, Jenni, in her generosity just said to me, ‘Stuff happens.’ It meant so much. It always will.