EPILOGUE. Hopes and Dreams

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… And if you’d like to learn more about necrotizing fasciitis aka flesh eating bacteria then read this post… NECK-re-tie-zing FASH-e-i-tis... Say what?!

As always - thank you for reading or listening!

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“You will one day experience joy that matches this pain. You will cry euphoric tears at the Beach Boys, you will stare down at a baby’s face as she lies asleep in your lap, you will make great friends, you will eat delicious foods you haven’t tried yet, you will be able to look at a view from a high place and not assess the likelihood of dying from falling. There are books you haven’t read yet that will enrich you, films you will watch while eating extra-large buckets of popcorn, and you will dance and laugh and have sex and go for runs by the river and have late-night conversations and laugh until it hurts. Life is waiting for you. You might be stuck here for a while, but the world isn’t going anywhere. Hang on in there if you can. Life is always worth it.”

Matt Haig, Reasons to Stay Alive

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A LETTER TO ME IN TEN YEARS

Dear Jacqui,

It’s strange – as I type this, I have the strongest sense of déjà vu. I feel like I’ve been in this exact spot before. Yet I’ve never thought to write a letter to my future self until now. Do you still love listening to the radio? I remember that the inspiration for this letter came from a favorite show. I wonder if you still listen to the same stations – perhaps most of those hosts have retired by now. The world keeps on turning.

The events of these past two years are a distant memory by now. I’m sure that you’ve got to the stage where you don’t need to say to every person you meet that “I’m an NF survivor” – I know that I’m already more selective about who I tell. Of course it’s an important part of your story, but there’s so much more to you. Your NF journey doesn’t define you. But it has made you a better person in so many ways.

When I look back, I can see how much I’ve changed compared to the version of ‘me’ that existed before I got sick. My short fuse and hot temper are (almost) a thing of the past. I have more patience. I’m less judgmental. I’m far better at admitting that I’m wrong. On a good day I’m much more flexible when plans need to change.

I’m kinder. I have more compassion and empathy. And I’m more accepting of others. I’m less critical and better at forgiveness. I’m calmer. I’m less selfish and more considerate. ‘Hate’ rarely, if ever, features in my vocabulary. I appreciate the small things. And I definitely have far greater clarity on what I want out of life.

I know though that I’m nowhere near perfect and there’s still plenty of work to do. Continue to build on those changes and make the effort each and every day to be a better person.

Is it reasonable to assume that you’ve ‘grown whole’ over these past ten years? I believe that you’ll have processed all that’s happened and fully integrated the old and new you. I have a picture in my head of a tree trunk and at the top is another type of tree that has been grafted onto it. The trunk providing all the sustenance that the other tree needs. Helping it grow and expand into a beautiful, luscious canopy.

For a time, I was haunted by the research that suggested NF survivors had a median lifespan, after the infection, of just ten years. It’s fantastic that you’re already on the other side of that. I hope that you’re living life to the full and not looking over your shoulder – the grim reaper is not lurking and waiting to get you.

I wholeheartedly believe that the darkness I saw before that fourth operation wasn’t necessarily a hallucination, but perhaps a precursor to my life potentially ending. My heart was already failing. But you came back from that – you’re a fighter, whether you know it or not. Yet it’s important that you find peace and accept that there’s one certainty in life: we’re all going to die one day.

How’s Kim? Are you enjoying growing old together? He must have retired by now, so you have more free time to do as you wish. I assume you’re still living in your ‘grand design’ house? And have gently molded that wild garden into the haven you dream of? Have you managed to tick a bunch of travel wishes off your bucket list?

And what about Mum? Is she still around? I guess that’s less likely as she’d be hitting 100 by now. But you never know. If she’s gone then I expect that you’ve been wise enough to ask for any help that you needed to process her loss.

How’s Evie doing? She’ll be an old lady by now, but I bet that she’s still bouncing around like the puppy she thinks she is in her head. Just the thought that you’ve had another ten years of her unconditional love gives me such a warm feeling and makes me so happy.

Is she still up for her long walk every morning or has she slowed down a bit? I’m sure she’s still staring at you at 7.30am (yes, she can definitely tell the time), ears pricked every time you use words like ‘so’ and ‘go’ or when you just take a deep breath that might be a signal that you’re about to get out of bed. She’ll be willing you to get up and out in the fresh air with her.

Have you managed to continue starting every day with a smile – especially on those dog walks as you meet other people (and dogs)? Those morning smiles make such a difference to your mood all day. It starts the day on the right foot.

I have no doubt that all the investment you’ve put into both your physical and mental health has been worth it. Are you still going to see Violet? I would take a big bet that you’re swimming, walking, cycling, and spending time on your yoga mat. Don’t forget that sometimes it’s time for a change – don’t just keep doing the same things.

You’ll remember that in summer 2024 you decided that you’d do the Copenhagen open water swim, around the parliament building in the city, once more. A last hoorah. Then it was time to find something new and let it go. I’m sure that you still think about it though on the last Saturday in August each year. Have you found new challenges to keep you fit and active?

I could go on asking questions all day – I’m fascinated to know how the last ten years have turned out. But let’s move on. I’ve learned a lot since getting sick and on my journey back to life. So much has changed. I thought I’d remind you of the five biggest things that I’ve learned – just to make sure you haven’t forgotten.

Here goes.

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#1 KEEP DREAMING

“You have to dream before your dreams can come true.”

A. P. J. Abdul Kalam

I realized that I’d lost the ability to dream. It had slipped quietly away without me even noticing. I’m not sure whether I had any personal dreams for a decade before I got sick. I forgot about the power of dreaming. The passion associated with chasing a dream. The feeling of being truly lost in something – that you love so much – that you have no sense of time.

Before I got sick my life was bleak. It lacked any vibrancy or color. I had no vision of the future – no hopes or dreams. It was incredibly stressful. I was permanently anxious and always exhausted. I felt like I was faking it every day just to survive. My direction wasn’t decided by my dreams, but rather by money, the desire for status, and day in, day out work.

As part of this journey, I’ve allowed myself to start dreaming again. I now appreciate the value of having and nurturing a dream. The sense of purpose it can give you. And I’m loving it. I’ve found inspiration and renewed energy in places I would never have expected.

You’re still coming up with big, beautiful, inspiring dreams – right? Who cares if you think they’re realistic or not. The whole point of a dream is the bigger, the better. Continue to harness that joyful feeling of finding a new dream.

And now you have the evidence that dreams can and do come true. You had a dream of writing a book and look at what you achieved. It gives me goosebumps. You managed to tell your story for all the people that couldn’t.

All the people who have been so damaged and distressed by the experience of surviving NF that they couldn’t revisit it, let alone talk publicly about it. All the people that sadly died as a result not only of NF itself, but also sepsis, septic shock, and all the other problems that can come along with it. This has all been for them.

I don’t know what the future holds, and I don’t need to know. But I believe that dreams will keep me (and you) on the right track to keep learning, growing, and always looking for fresh inspiration.

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#2 YOU ARE ENOUGH

You are. You have enough. You are valued. You are worthy of love. You are loved. You are appreciated. You need nothing more. You are enough.

I know this has probably been one of the toughest for you. I felt like an imposter in my own life for such a long time – before I got sick and even for a time afterwards. Using a fake persona like body armor to get through each day. Saying that I was OK, when I was anything but.

But I’ve found out that it’s safe to come out of hiding. To just be me. People don’t run away screaming. They don’t expect anything I’m not. I can be my authentic self – finally. And it feels right.

It’s not easy. That desire to hide isn’t entirely gone. It takes work each day. Are you comfortable now with ‘just’ being ‘Jacqui’ again? Have you gotten better at just being you?

You have everything you need and I have faith that not only are you ‘living lighter’ (mentally and physically), but you’ve also adjusted to a mindset of abundance instead of scarcity. Can you appreciate that life’s possibilities are totally limitless? The future, whatever it will be, is full of new opportunities. Fresh challenges that you can approach with plenty of optimism and a good dose of generosity.

I thought that my purpose after this experience was to be happy. It was an impossible quest. It made me miserable and anxious. It dragged me down, because I couldn’t find it. I was trying too hard.

In the past few months, I’ve found my purpose and tapped into my creativity. Sharing stories and information to help others. Creating something that inspires people. Something that makes them feel something. Something that moves them. I jump out of bed in the morning and can’t wait to get started. I feel valuable again. I’m contributing to the world. And I feel less alone.

Over the past ten years I’m sure your purpose has continued to evolve. What is it now? I’m almost certain that you’re still writing. I wonder what you wrote next?

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#3 KEEP WALKING ON RAINBOWS

“The only moment in which you can be truly alive is the present moment.”

Thich Nhat Hanh (Buddhist monk)

I have that old Katrina and the Waves song in my head – whatever the weather I hope that you’re still ‘walking on sunshine’. Experiencing the joy of seeing the blue sky that is such a special color over Denmark. Or perhaps it’s more about walking on rainbows with your love of colorful shoes?!

I believe that we can’t fight the universe, but I don’t believe in us each having a pre-defined destiny. I expect that you’ve continued to learn how to lean into the flow. To stop fighting the current. To trust the process. The future will be whatever it will be.

Today I still find it challenging. Ten years on I’m sure that you’ve become an expert. I have an image in my mind of you floating like a starfish, on your back, in a quiet, gently drifting stream. Letting yourself bob along. Totally relaxed. Curious to see where life takes you next.

I hope that you’ve continued to find more ways to get into your state of flow. Just like you’ve found with the process of writing. And that you’ve found ways to channel that energy into letting yourself be happy, and into recharging and healing both your mind and your body. Don’t forget – happiness comes when you try the least.

Have you managed to find a ‘lightness of being’? Not the unbearable kind made famous in the book by Milan Kundera, but the pleasurable kind. The ability to relax and go where the energy takes you. Instead of trying to drive, control, and hold too tight – choking the life out of any enjoyment.

I’m very much aware that I still have a challenge when it comes to doing nothing. To letting myself just ‘be’. I fret. I get anxious. That little voice in my head tells me over and over that I should be doing something.

But realizing that’s the case is half the battle. I hope you’ve been able to make progress. If you didn’t manage it today then there is always tomorrow to have another go. Don’t beat yourself up. Worry less.

Remember. Let it be. Just let go.

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#4 GIVE YOURSELF PERMISSION

Nobody else can give you permission to eat that delicious slice of cake. It’s up to you to make that decision. Don’t go looking for permission from others – you’ll never find it. Remember to let yourself enjoy that sweet treat sometimes.

I still have a hard time being kind to myself – I’ll gladly admit that. I’m a strict task master. I’m stubborn as hell. Once I get it in my head to do something it’s difficult to change direction. I bet you’ve continued to fight that good fight.

I’m optimistic, that if you’ve done nothing else, that you’ve learned to be nicer to yourself. Being kind doesn’t mean lazy. It means giving yourself permission to take a beat – maybe take a day off your exercise regimen once in a while. Or give yourself a cozy afternoon sat on the sofa reading a good book. Or just let yourself write, to recharge your batteries, when you should be doing something else.

Give yourself permission to be happy. And to feel whatever you need to feel at a given moment – feelings always pass. Permission to have a good day. To have a bad day. To be yourself. To dance whenever you fancy to a song you love on the radio. Don’t take yourself too seriously.

Don’t keep waiting for a day, that may never come, to be happy or be whatever it is you’re waiting for. Today is the best day to enjoy life. The only day. Don’t wait until you ‘retire’ – for that matter, don’t ever retire. You still have plenty to give and share with others.

Revel like a pig in muck in joy. It’s the most wonderful feeling. We talk so much about happiness, but joy is next level. It fizzes in your veins. You can’t help but smile. And you infect everyone around you!

And most definitely give yourself permission to simply get on with living your life.

Let yourself just be you.

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#5 LOVE!

It’s a fact – nothing else matters. All that will remain when you’re gone is love.

Has the fascination with listening to memoirs – particularly those read by the authors – continued? Or was it a transitional thing because of writing this book? I have a feeling that it’s still something you enjoy.

Maybe by now you’ve worked out what you’re really looking for in those books? I think I know. It’s help. Help to understand how to love yourself. Even to just like yourself a little bit. That would be a start. That’s always been the thing that you’ve found the hardest. It will have been your biggest challenge over the past ten years. There’s no easy solution, but I’m sure that you’ve been working on it.

In one of those memoirs, I came across a quote that resonated so much for me. It’s usually given as “when one door closes another door opens”. However, the real quote by Helen Keller is:

"When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us."

Are you still looking at closed doors? I think not. I’m sure that you’re enthusiastically walking through plenty of newly opened ones.

Go get on with living your life.

Keep holding hands with Kim.

Cuddle Evie.

And show those you care about just how much you love them.

Nothing else is more important.

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My experience over these past couple of years has become part of your past. It may sound weird, but I’m grateful for what happened to me. I wouldn’t be who I am now, or who you are in ten years, without this experience. It’s part of my history. Part of what makes you special. Never to be forgotten.

Embrace the gift of life. I’m not asking you to be grateful as I know that’s not something that sits well with you and I can’t imagine that’s changed. But I have confidence that you look forward to the future with not only hope, but also excitement.

Remember to smile EVERY morning. It’s a new day full of wonderful opportunities – just open your eyes and they’ll be right there in front of you.

Be present. Yesterday is gone. The future beckons.

Loads of love,

Jacqui

4^th October 2024

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Image caption: a beautiful peony from the garden at our old house. I have yet to add these to our current garden - another autumn job to add to the list. I picked it for this post as I recently found out that it’s the flower of ‘healing’. Why is it associated with healing? Well apparently it relates to Greek mythology as the the peony is named after ‘Paeon’, the physician of the gods, who used it to heal wounds. Whatever the association I just adore these beautiful, big, blousy flowers.

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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!

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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.

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