Hold My Hand: A Journey Back to Life

A Book in Parts – Starting May 1st

I’ve written a book. Have I said that before? Yes. I know. I most definitely have. More than a few times. But did you know that as soon as next week you’re going to get the opportunity to read it? And it will be entirely FREE. And I’m a nervous wreck!

Maybe at some point in the future I’ll have my book published more formally, but for now I’ve decided (like a bunch of others here on Substack) to channel the great Charles Dickens and share what I’ve written as something called a ‘book in parts’.

It wasn’t unusual in the Victorian era that books were published, a few chapters at a time, in low cost monthly instalments – hence the term ‘book in parts’. But what made Dickens special was that his books weren’t finished when he started to publish. He could then adapt his story as he went along depending on reader feedback on the parts published so far. I liked that idea.

Starting on Thursday 1^st May I’ll be publishing my book Hold My Hand: A Journey Back to Life chapter by chapter. I’m so excited (and nervous) to finally share my story with a wider audience.

I plan to publish a chapter each week. There will still be some posts on other topics now and again, but you’ll be able to spot the book posts – the post title will be the chapter heading and the sub-heading will always be the book title.

If you look on my Substack website you’ll see a specific page dedicated to the book posts so you can find them in one easy location – just click HERE. Don’t get excited - it’s just this post that will be there until next week.

My book is still a work in progress and like Dickens I’ll be furthering developing each chapter as I go. So your feedback will be much appreciated and really will make a difference.

If you haven’t already then please do hit the subscribe button below and you’ll never miss a chapter.

Will you be able to relate to my story?

Most definitely.

There are few certainties in life. We are all born and at some point we will all die. The in-between is the great unknown.

Yet we can guarantee that every one of us will have to live through one or many more traumatic events in our lives which change us. And that force us to adapt, evolve, and grow. Whether it’s a major medical event like mine or one of a multitude of other events that can affect you.

I know you, and many other people, will be able to relate to my story.

Image caption: finally not a picture taken by me! No, these are not our real hands. One day I will share a picture so that you can see how tiny my fingers are compared to Kim’s sausage-size ones. He naturally has big, strong hands (great for hugs and opening lids!) and once acquired the title of ‘biggest ring ever made’ when he had one custom made by a local jeweler. Apparently he lost the title a few months later to a blacksmith with even bigger fingers! Image credit this time goes to Adobe Stock.

What can you expect from the book?

Sandwiched between an opening (scene setting) prologue and a final (letter to myself in ten years time) epilogue the book is broken into three main parts.

Part I: My Story I was just an ordinary middle-aged woman. Nothing special. Relatively fit and healthy. No major diseases. Yet in the space of just 24 hours, I went from feeling a little under the weather to being close to dying from sepsis and septic shock. The doctors knew I had an infection. But where? What type? Why was it exploding? How could they keep me alive?

This first part of the book will tell you the story day by day, in some parts hour by hour, of what happened in the first two whirlwind weeks from the day I got sick. It was nothing short of a tornado that upended my life and the lives of those I hold dearest.

Five operations in eleven days. A drug-induced coma. Lying unconscious in intensive case. Liters of antibiotics poured into my body. Treatment in a hyperbaric chamber. Horrific hallucinations.

And when I awoke I experienced an uncontrollable fear that if I didn’t get out of the hospital as soon as I possible… I’d never leave alive.

Part II: A Journey Back to Life When I finally shuffled out of the hospital it was into an alien world. In a body that I no longer recognized as my own.

This second part of the book tells a number of stories, centered around specific topics, about how I’ve fought to recover, both mentally and physically, over the past two years.

It’s been a huge mountain to climb and there have been plenty of setbacks - some expected and some very much unexpected.

Physical wounds and scars are obvious and horrific in their own right. But everybody can see them and the progress of the healing process – if you let them.

The mental scars are a different matter - invisible – only perhaps recognized by the most experienced onlooker that knew me well and spotted a look in my eye or a micro-expression that flashed across my face. Maybe not even then.

“I’m OK, right?” “I’m OK.” How often did I say that? To myself and to other people. But it wasn’t true. It was fake news. I thought I could make myself OK if I said it often enough. Did that work? No. Not by a long shot. It just made it all worse.

Recovery takes time. It can’t be rushed. You can’t force it. I was desperate for everything that had happened to be in the past.

The mental recovery has been far harder and much longer than the physical recovery. Two years on I’m still only part of the way through the process. Some days it feels like I’m almost there. Other days I feel like I’m still only at the beginning.

Part III: NECK-re-tie-sing FASH-e-i-tis This is the science bit. What is it? Do the bacteria really ‘eat flesh’? (Spoiler alert: no, not exactly.) How many people are affected? How do you get it? What are the symptoms? How is it treated? Could you get it too? The answer is yes.

What have people thought of the book so far?

A HUGE thank you to the small group of people who were kind enough to say yes when I asked them to read an earlier draft of the book. Each and every one of them were willing to put in significant time and energy to give me feedback, spot (the multitude of) typos (there were way too many!), and convince me that what I’ve written genuinely needs to be shared with the world.

You all know who you are - please know that you have my heartfelt thanks. And ‘tusind tak’ to the Danes among you.

You’ll be glad to know that their feedback has already been incorporated in the version of the book that I’ll be sharing here on Substack.

Now for a bit of shameless self-promotion which makes me distinctly uncomfortable, but I think it has to be done. Doing my best to ignore the anxiety.

Here’s what some of those early readers have said:

“A brutally honest account of Jacqui’s horrific ordeal of contracting NF and sepsis, how she overcame this devastating disease and the resulting impact this had on herself, her family and her outlook on life. Combined with her personal stories, Jacqui presents detailed scientific explanations of NF, helping to raise awareness for others who may contract this mysterious and deadly disease.”

“I was incredibly captivated by it and read it in 3 days - I was equally moved by both part I and II ... You share a lot of yourself in a very honest and raw way … The way you are able to write one can truly feel your anxiety, fear, sadness, and confusion. It's a crazy journey you have been on and still are, deepest respect for this and for where you are heading in your healing process and beyond this…

…I love the ending and your letter to yourself in 10 years; there is so much self-kindness in it, and a release from others' opinions, allowing yourself to be who you are and believing that it's enough to be loved, I guess that is what we all fundamentally long for.”

“I really enjoyed it, but I also feel touched, moved and inspired at the same time. What an achievement. To survive this horrible event of course, but also to then go through so many challenges, to be able to so fundamentally shift your outlook on life and manage to come out on the other side that person you are now. And to have written this book about it!”

“If I had to describe the book in just three words I’d say life-affirming, insightful, and honest. Jacqui is such a great storyteller – reading the book I felt as if I was there myself!”

“I was touched on so many levels and there was so much I could relate to!!! I did not have NF, but I had my fair share of surgeries … THIS BOOK NEEDS TO COME OUT… besides touching me so deeply, it gives me hope.. it made me warm inside when you were describing how your hand fits in Kim’s. Made me think that it’s probably safe to let someone hold my hand again.”

Please can I ask for your help?

Getting any book published is hard as there are thousands and thousands and thousands of people trying to get their books on to bookshop shelves at any one time. And getting a ‘survival memoir’ like mine published seems to be even harder.

Finding an agent is like looking for a needle in an incredibly big haystack and of course even if an agent is interested it doesn’t mean that a publishing deal is guaranteed to follow. I am getting my book proposal out, but progress is glacial and the majority of agents don’t even reply. But I’ll keep on trying.

However, I feel such a strong need to get this book out into the world and Substack seems like the perfect platform to be able to share it on my own terms and in my own time.

Whatever happens I’ve fulfilled one of the biggest dreams of my life – that I’ve had since I was a little dot and hadn’t even learned to write the alphabet. I’ve written an entire book. A whole book! All 80,000 words of it. Nobody can take that away from me. For once I can put my hand on my heart and say that I’m truly proud of myself.

Here’s what I ask of you:

Request #1 If you ‘enjoy’ the posts please do click on the heart and add a comment to share what resonated for you. I’d love to hear from you.

Request #2 Please do share my posts with anyone you know who might appreciate the content. The more widely it’s shared, the more it will help a wider audience find Hold My Hand. It would be great if you can help me spread the word. You never know, knowing the symptoms of NF, might even save a life one day.

You have been warned so watch out world – Hold My Hand is setting sail for it’s maiden voyage next Thursday! I very much hope that you’ll join me.