Last week I had the pleasure of speaking to a lovely, receptive audience at a Grey Power meeting. I started by talking about why I wrote What Are You Doing Here? Reflections on Dementia, but spent most of the time discussing why it’s important to talk about dementia and why personal stories are so important.
There are plenty of very good caregiving handbooks or guides around, and they are invaluable for people in the middle of day-to-day coping and caring. But I wanted to reach a wider audience of people who probably know someone with dementia or a caregiver, but don’t necessarily have those daily caregiving demands themselves. When I first started writing, people told me that they weren’t so interested in caring tips—they wanted to read personal stories.
Here are just a few of the things that make personal stories powerful and engaging:
- People connect with stories
- Stories are a way of sharing experience and can illuminate a subject in a way not otherwise possible
- It’s reassuring and validating to read of others with similar experiences
- Stories ‘fill in the gaps’ and can reveal what not obvious to outsiders
- Stories come from the heart and touch our hearts
Stories invite other stories. One person tells their story and another adds theirs. When I invited questions at the end of my presentation, one woman stood and told a little of how she and her husband coped with dementia. I had spoken about the importance of concentrating on what a person can still do, rather than what they can’t. The woman illustrated this point beautifully by telling us how her husband was still able to add figures and she would give him lists of figures, which kept him happily occupied doing something that he could do well.
Obviously this was just a glimpse of a much larger story, but it was important for many reasons. I’m sure, for example, it’s a revelation for many that a person with dementia is often capable of intellectually demanding tasks.
It’s so rewarding when people connect with stories and a talk becomes a conversation.
How exciting! A five-star review of What Are You Doing Here? Reflections on Dementia on Goodreads.
I wanted to add a widget to this blog showing Goodreads reviews, but I can’t seem to do it on a WordPress blog.
Instead, I’ll quote the final paragraph of the review here:
‘I can’t help but feel the world would be a better place if ‘What Are You Doing Here?’ was recommended reading for anybody either working with dementia sufferers or responsible for making policies that affect their lives.’
Of course, I agree! There is a lot in the book about my mother’s experiences in residential care and in hospital—some of it good, some of it not. I discovered how easily people with dementia can fall through the cracks. They get overlooked, and sometimes ignored. Assumptions are made, reactions to confusion and stress are labelled as challenging behaviour and no one has the time to listen and reassure. There are some amazing people who work in dementia care and treat the people they care for as people, but we need more of them. And we need policymakers who realise there are people behind the statistics.
In my last post, I commented that the workload and learning curve don’t slacken off once a book is launched. This post looks back at just what was involved in getting as far as the launch. Back in January this year when I decided to go ahead and self-publish, I happened to see a post on author Catherine Ryan Howard’s blog where she listed all the steps in self-publishing one of her books as an e-book and a POD paperback. I love making lists, so I immediately started my own, but mine is for a traditionally printed book.
Here’s my list:
- Make a rough estimate of unit costs for digital printing using the online calculator of a local digital printing digital firm
- Request estimates from other printers
- Request estimates from book designers (for cover and interior design and layout)
- Crunch numbers
- Visit a printer to discuss requirements and request a quote
- Receive quote from printer and re do numbers
- Start working on blurb (harder to write than the entire book)
- Arrange editing (editor can’t start until following month)
- Begin work on marketing materials
- Send draft manuscript to editor
- Receive edited manuscript
- Work through changes one by one (very time consuming)
- Response to editor’s changes
- Receive final version from editor
- Check to make sure no errors in edits
- Meeting with printer
- Meeting to brief the designer
- Apply for an ISBN
- Meetings with designer to review design suggestions for cover and interior
- Interior to designer
- Start work on website
- Arrange head and shoulders photo for back cover, website etc
- Receive PDF printout from designer and proof read it
- Apply for Cataloguing in Publication record
- Two more rounds of proof-reading
- Negotiations about design cost overruns that I wasn’t informed of until the work was completed; re-do figures and feel slightly ill
- Check final proofs before printing
- Prepare fact sheet about the book
- List book with Nielsens (best thing I did!)
- Start arranging talks and preparing presentations in anticipation
- Contact a small number of magazines, websites and organisations offering review copies (and defer sending review copies to bigger publications until I’m generating some sales)
- Arrange interview on local community radio
- More work on website and blog
- Send out launch invitations
- Pick up boxes of printed books from the printer
- Send two copies to National Library for legal deposit
- Receive and process first orders (invoicing, packaging, repeated trips to the Post Office)
- Record radio interview
- Arrange a distributor
This is just a summary; it doesn’t take into account how long it took to complete some of the tasks or the hours of figuring out how to do some of them. And it doesn’t even hint at the previous two years of research and writing. The best thing about this list, for me, is I can use it as a starting point if I ever embark on another self-publishing adventure, although I probably wouldn’t do it quite the same way again.
Even though I stopped my list at item #40, the work is never-ending. Sure, having a distributor lessens the workload, but I’m still busy marketing and hardly a day goes past without me doing something related to getting word out about the book. Yesterday it was a presentation and today it’s a blog post.