Part III. NECK-re-tie-zing FASH-e-i-tis
Hold My Hand: A Journey Back to Life
If you missed the previous chapters of Hold My Hand: A Journey Back to Life then you click here to find them all - Hold My Hand - The Book. Want to know more about me? Oops! I forgot to introduce myself…
As always - thank you for reading or listening!
You can breathe a sigh of relief this week - I’m taking a mini break and not posting a new chapter. You get a pass. A week to recover from some of the hard stuff that I’ve been sharing about my necrotizing fasciitis journey. Though there has been at least a bit more positivity lately. So why is there no chapter this week when there are still more to come? Let me bend your ear and explain.
Since May 1st I’ve been consistently publishing a chapter a week. And last month before we set off on ‘the big UK camper van trip’ I had (I thought) finished draft 5 of the book. All the remaining chapters were in Substack and scheduled to publish.
We started out, back at the very beginning, with the opening Prologue: Life is a Game of Chance.
Then we went into Part I: My Story - covering those first two weeks after the tornado hit i.e. after I got sick. If you haven’t read it yet then start with Chapter 1. Out of Nowhere where it all kicks off on 22nd December 2022. Or catch up on the audio recording of each chapter which are published together here.
And then last week we finished Part II: A Journey Back to Life - stories from the subsequent two years as I fought to recover both mentally and physically. That section starts with Chapter 12. Alien World which is the most read chapter of the book thus far. I wish I knew the magic sauce that has made it so popular.
Today we should have been moving on to Part III: NECK-re-tie-zing FASH-e-i-tis. But sometimes even the best laid plans go awry.
I always envisaged having a specific part of the book dedicated to the science and that was more educational. Of course it also includes more of my own story from the medical perspective. That goliath of a single chapter about NF was way too big to handle. So initially it was split into two posts when I made my last revisions, copied it into Substack, and recorded the voiceovers last month.
But… as of earlier this week my brain kinda exploded. It happens sometimes when my emotions (and all those memories) suddenly get the better of me for a little while. In a weird way these episodes always lead to a breakthrough of some kind. It’s a bit like unblocking a drain. Once again I could see things more clearly. And there was a distinct light bulb moment while I was swimming up and down my beloved pool.
What was that idea? Well, what started originally as a single chapter, that then split into two, morphed again and I’m now convinced that it needs to be split into three chapters. Why? Simply because I think it will be so much easier to absorb. And secondly because there was a personal story in there that was drowning in the other material and which needed to be able to breathe and stand on it’s own.
Below you’ll find out more about what’s ‘coming soon’ and a summary of the upcoming chapters in this part of the book.
Have no fear the science and medical stuff isn’t quite the end. There will be a closing chapter - Epilogue: Hopes & Dreams - that will be published at the end of October.
As always thank you for reading (or listening). I live in hope that this more informative section of the book will perhaps help save a life in the future.
Now I’m off to finish editing those revised chapters and do the voiceovers all over again! Now where’s that duvet gone?
Have a wonderful day,
Jacqui
COMING SOON
Chapter 21. Science & Statistics - next Thursday (9th October)
What is (and isn’t) necrotizing fasciitis? What causes it? How many people get it? What are the risk factors? How can you recognize the symptoms? Aka the bloody hard, but so important bit.
Chapter 22. A Trip to the Deep - landing 16th October
How is NF treated? What are the options? And why is there a photo of me hugging what looks like a small white submarine contraption that has some kind of 1970’s space age control panel?
Chapter 23. A Life Changed - landing 23rd October
If you are unlucky enough to get NF what are the possible medical consequences - including skin grafts, amputations, and even transplants. What is going on in terms of NF research, including possible new treatments on the horizon. And finally, how can you find your community and people that you can relate to…
References
Many of the same references are used repeatedly across these three chapters of the book so if you’re interested in getting back to some of the source data I’ll be publishing the list at the end of Chapter 23 along with a few useful websites.
If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.
If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.
Thank you!
If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.
Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter.
Image caption: a totally gratuitous picture of Evie in ‘gimme gimme gimme’ that treat mode! I can hope that’s the look on the faces of my Substack audience when they read about the upcoming new chapters, right?! LOL
your posts came across my feed and I binge read them. I was fascinated by the subject matter but on Substack great subject matter can be wrecked if the writer can't write but you can write! I realize that sounds Arrogant of me but some of Substack is just high school journalling, ha. This is probsbly because I am old and haven't high school journalled since the early 80's myself. Anyway, I'll keep reading.