I am finding it extremely tedious and time-consuming (and a bit traumatic) copy/pasting bits of my blog into a possible book about our journey into the land of Parkinson’s so I’ve decided instead to begin to write the story afresh. Going back to the sadder blog posts is only making me sad whereas writing the story with the benefit of hindsight, and from a position of acceptance seems a better way to approach the project. The blog posts are a reliable historical record of events so I can always refer to these, and even quote myself (weird!) if need be.
I don’t want the book to be in any way academic because my last book, We’ll be married in Fremantle, was a rewrite of my PhD thesis so didn’t quite get the interest (or sales!) that it might have if had been marketed differently. For instance, the title of that book in no way indicates that I was writing about Alzheimer’s disease and about how to appreciate the storytelling abilities of sufferers.
Rewriting something seems to me a bigger task than writing something from scratch; rewriting the thesis as a book was a very long process (two years!) so I don’t want to have to do the same kind of rewriting thing with the blog. I have a bit of a problem at the moment with the whole re thing!
Instead, what I want to write is a book that is partly auto/biographical, partly how-to, and partly humorous. I want each chapter to incorporate each of these attributes and to work as a stand-alone essay/story.
Today I saw the biggest smile I have seen on Anthony’s face for a long long time and the carer who came into his room to give him his pills was astounded! He has almost begun to grin again now – incredible! Is my conjuring of daily smiles actually improving the muscle function in his face? If so, maybe some scientific person could research this and send me the findings ha! Hint to the Michael J Fox foundation….
The Anthony book will not be a very big book because I don’t want to repeat stuff that everyone already knows about the hardships of disease and caring etc. I just want to write, in the same personal style I use in this blog, about our slant on the more difficult dilemmas Ants, Ming and I have faced, in the hope that this will be helpful to someone/anyone!
Here is my chapter plan so far:
1. Thinking about the unthinkable (diagnosis shock, incontinence, fear of nursing home possibility)
2. Losing the love story (how having to care for someone takes its toll and affects relationships – Ming’s perspective useful here)
3. Hiding (carer withdraws, escapes, becomes workaholic in her job in order to avoid husband’s constant needs)
4. It’s not just all about you! (finding some sort of balance between young and old, sick and well, angry and happy, sad and funny etc.)
5. Lost and found: Anthony’s smile.
Anyway, that’s what I have come up with so far in terms of structure and content and any feedback appreciated!
jmgoyder 
Good luck Julie but I am sure you can write your journey with your family quite easily.
Julie, that sounds like a great plan. Perhaps it’s included in the plan above, but I would include glimpses of the man he was, i.e., some of your love stories or his work, his easy laugh, etc. I think the contrasts would be striking… just my two cents. 😀 ❤
Diana xo
Thanks so much for these suggestions, Diana!
I, too, wish you all the very best for your book. The outline plan looks excellent.
I love it… just think you need to keep in mind the little nuances and happenings that are not expected by the spouses… this can be very helpful to those that buy the book in the hope that they find relief that it has happened to someone else and is not unusual…
I am planning a book about Linda’s three cancers that she has survived and about the treatments etc… not from a scientific point of view, there are experts that write about all that, but rather the things that happened whilst she has gone thru all the treatments… hell she once bit my head off when I told her I loved her bald head… but it was directly after a chemo treatment which lasted 8 hours… another time they drew a smily face on the back of her head during her treatment, I thought she would not like it and said so, again my head disappeared… it is such things that Doctors don’t write about, the spouse’s trauma and duties they go thru with head held high and looking as though nothing bothers us in the least, and why are we such ?? To look strong for our partner, while a ball of crap juggles around in the stomach making the nervous system run a mile…. It is these that need to be shared, so that the partners can see what they feel is not unusual…
I was once asked how I coped with all the trauma “with a smile on my face”… I answered, “Is a clown smiling under his make up?” It is this type of conversations I’ve had with others going thru the same as I did… and they are always happy to find out how I actually deep down felt, they thought they were alone….
When coping with what we have to, it is always something we keep to ourselves as we think people might think us weak…. I was so, but not any more, when asked I tell them exactly what I went through all alone as there are not many support groups for the partners, pleanty for the sufferer…
I think your book will be a winner… you go for it and from me a big STERKTE,,,
You are so wise and such a mentor to me in these matters. It feels so much to me that we have similar journeys from despair to hope. Your STERKTE has been my mantra for so long and I often think of Linda. I adore you!
You have some great thoughts on your book which will make good reading
Sounds like a good chapter line up and a more carthartic way for you to write it. Wishing you well with this, Jules. Love, Paulette
i look forward to this book, and it will make all of your efforts worthwhile once it’s done )
It will be an extraordinary book Jules! I completely get what you mean about the rewrite thing, switching gears from one platform to another is exhausting. You are an amazing lady Jules. 😀
Hi… The chapter ideas look good. Are you going to include in whatever depth you decide on, about how you and Anthony met, and his personality etc. before the disease began to show symptoms… Just my thought… Diane
I love what you are doing – I have those same thoughts quite often, as far as rewriting or working from my own huge blog.
But what I do sense is that perhaps there’s no rush on this because the story is still being writen. As long as Anthony is alive, there is a different spin and when he’s gone your feelings might be different. Just as when you first started, every part of your journey is filled with different emotions that will frame your book.
There is definitely more to come – and of course, no reason not to get started now.
You’ve got this, Julie. I look forward to the finished product.
Jennifer x
just keep at it Julie. You have a very valuable story to tell
I don’t care how you write it, just know when it is done I for one will like to read it and did read We’ll be married in Fremantle,which I found to be very interesting
This sounds like a good plan, but like somebody already said, I think the book would benefit from some stories, glimpses from the time he was healthy. Those could be weaved in at appropriate places and wouldn’t necessarily need to be a separate chapter, or history, in the beginning. You can do it!
Once you’re done, it might be worth comparing the memory to what you wrote at the time.
I am excited for you and I know it will be therapeutic in so many ways, as well.
I lost my husband suddenly 3 weeks ago (3 weeks ago today as a matter of fact) and I wonder whether the finality of what I am feeling is really not as bad as the pain at reliving that shadow of what has been lost, over and over every time we look into the eyes of one we love who is so changed…
I guess this is why I find your posts which see reality at all the right angles, and in its best light, so captivating!
Good luck!
Oh Mandy I am so sorry to hear this terrible news. Please know I am thinking of you and sending love. Julie x
I love that you are writing a book about this! Maybe start writing the good parts first. Start with now, when despite everything you all have achieved a level of “happiness” that surprises even you!
What I find so compelling about your story with Ants & Ming is the strong foundation of love, your honest portrayal of the good, the bad, and the ugly, your determination to keep love and humor alive and that your story isn’t all about Parkinson’s disease. The rest of life keeps happening. I do hope you talk about the disease, too. Even caregivers and doctors probably don’t recognize how comprehensively your life has been impacted and changed.
I really like the idea of a book that’s not academic, but personal and intimate. You weave so much into your blogs, the past, present, and emotional, that I can see you doing that in your book, too. That’s why I love reading your posts. I get the reality of what’s happening, along with your thoughts and reactions on how to deal with it in your beautiful, positive ways. AND I get to know Antony and Ming, both of who are pretty darn wonderful.
Thanks for sharing your journey. It will be a challenge. The very best of strength and wishes to you.
Writing a book is very time consuming. Plan it well and you find it easier to do.
Those chapters sounds like great ‘starting points’ but like Bulldog, Diana and Tiny said, there’s lots more to include and I hope you’ll do so. Like Bulldog, I think it’s really important to include how you felt through the diagnoses of Anthony’s health. Relating some of those gut wrenching incidents & thoughts might be traumatic, but they will go a long way towards helping other carers in the ‘same boat’.
I think the most important point to get across to readers is that they’re not alone in their own struggles with serious health issues.
Chronic and potentially terminal disease is devastating, but the way in which we can accept this and live with the knowledge, defines how well we can move on (at the end).
Vicki
x
Love this idea, it’s wonderful. My mother is currently going through a tough time, not with the particular disease but with similar themes (memory loss, dementia, seeing a loved one morph into something different) so it would be nice to have something to give her for comfort. Plus, you’re a wonderful writer, so I know it will be great.
I wish you much success in your writing endeavor. The worst part to me is the marketing! I would rather write than sell 😏
Sounds like you’re off to a good start. I admire your perseverance with getting your book done. Mine is still sitting on a shelf. At least I think it’s under that inch of dust.
Get that book off the shelf!
wow, i so admire you on so many fronts!!
I know you will have probably have it covered already somewhere but I was thinking about possibly a chapter about having let others help, by that I mean accepting that you are not super woman and cannot do it all, you mentioned being ill and your mother stepping up to do nursing home visits in one post but I am thinking more than that that for some people there will come a point when they have to accept help that they are not comfortable with (I have no experience here just trying to put myself in your place) for example having to let someone else bathe your loved one, I can imagine the logical part of my head saying I need help that is what hey are doing but the irrational part screaming get your hands off my hubby. Maybe by that point that part has been quieted but I can still imagine that there is an internal conflict between what you can realistically do and what you feel you should be doing? I have probably explained what I mean very badly hope you can pick something useful out of my waffling