"Why I’m writing this now"
by Julie Rackebrandt
Some time last year I was contacted by this book’s project manager who met my daughter Emma while they were in Hampstead Rehabilitation Centre Spinal Unit and asked if I would write a contribution on Emma’s behalf.
Emma would have been doing this project had she been asked. Having learned how to manage her “new normal”, she loved participating in anything and everything. She advocated for disability regarding the limitations and different methods required to function in the wider community. Given that Emma would have definitely wanted to be part of this writing project, how could I say no?
My biggest challenge was to “get inside Emma’s experience” retrospectively and remember her experiences and our chats. She passed in 2016. So I went onto her Facebook page (and mine) and looked for posts she’d shared, notes she’d written in books, discussed her experience with family and care professionals and reflected on significant memories of my own.
This writing gave me a sense of purpose for her, to be able to share with others her experiences and personal achievement against a degenerative disease. I hope it may influence others diagnosed with similar conditions to have a positive outlook as well as bringing wider acceptance, tolerance and inclusion.
I think the success of this book will come from the variety of stories written which span abilities and life circumstances. I think it will be of interest not only to those with a disability, but to those facing the challenge of accepting change and hopefully to those who care as well as those in the wider community. Overall my wish is it that it puts a human face on disability and facilitates wider acceptance of individual difference without judgment.
Emma was diagnosed with a rare brain and spinal cancer which left her paraplegic after her initial surgery aged 19. After a fierce fight punctuated with lots of great experiences, Emma died just before her 25th birthday. She was my tag team buddy in life both before and after her diagnosis so writing this was the least I could do for her and others to raise awareness of living every day.
Please provide support for our book project by viewing our documentary, and pre-ordering our book.
To select closed captions click "CC".To select subtitles
1) click "settings"
2) click "Subtitles/CC"
3) choose language
Click here for the documentary with audio description
Return to the list of Blogs.