CHAPTER 20. The Illusion of Tomorrow
Hold My Hand: A Journey Back to Life
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“…if we are full of enthusiasm for life, then the unknown reveals itself,
and our universe changes direction.”
Paulo Coelho, Eleven Minutes
Much has happened as a result of what I went through. My life is unrecognizable in so many ways to the one I had before I got sick. Some of those changes have been my choice. Some of them haven’t but have turned out to be positive. Some changes have been forced on me and I’m not so enthusiastic about them. And realistically some of the changes would have happened whether I got sick or not – that’s life.
Some of the changes lasted only a short time and I’ve reverted to where I was before. Others have stuck and in some cases evolved further. Some changes actually started before I got sick but were accelerated afterwards.
I appreciate just how fortunate I am that I have been able to embrace change and wasn’t financially forced ‘back’ to things that I did before that no longer work for me – like my job. I’m well aware that many others don’t have that luxury.
I feel as if all of my senses have been turned up five notches. I look at the world through different eyes. I stop and take the time to look around me more frequently. It’s more colorful – and those colors are much more vivid. I notice the birds singing. I feel the breeze on my skin.
My pace of life has changed. My expectations have changed. I no longer feel the need to be rushing forwards. I’m more settled in the here and now. Life is simpler.
I’m not saying that everything is perfect. Who can say that? But I can ‘see’ myself a little more clearly. And I’m quicker to catch myself and change course when anxiety or fear starts to impact on my mood or behavior.
There’s still plenty for me to work on.
LIVING LIGHTER
I used to believe that ‘more’ was always better. More clothes, more shoes, more bags, more sunglasses, more jewelry, more everything. If I liked something then I needed to have it in multiple colors. If I had one of something then having three must be better, right?
I also kept things forever without using them. Not only because I had too many things, but also because I wanted to keep them perfect until the right time. When was that right time? In many instances it would never arrive.
I even bought more than one of something when I liked it so much that I couldn’t bear the thought of it wearing out. I had cupboards full of things that I never used and that I most definitely didn’t need. How many dresses can one person wear?
I can recognize now that I used material things to soothe my soul. My life was centered around things that are probably better referred to as ‘stuff’. Buying stuff gave me fuel. It helped me get through hard times and kept me going.
I would shop to distract my frazzled brain when I was on yet another business trip. Running on pure adrenalin. I shopped to treat myself. To make myself feel better. Trying to put balm on the painful wound of being away from home (and Kim) yet again. And made worse by a whole heap of work stress.
It would help for a few hours, but the effect quickly wore off. And my wardrobe continued to grow with stuff that I simply didn’t need. But I kept doing it because I couldn’t find comfort any other way.
Instead of dealing with the root cause I continued to try and treat the symptoms. The loneliness. The stress. The effects of imposter syndrome. The feelings of never being good enough. The anxiety that one day I’d be found out.
On top of that I was like a squirrel building its stash of nuts. I couldn’t take anything else on top of all that stress. As a result, I was terrified of running out of anything – be it shampoo, conditioner, my preferred deodorant, toothpaste, perfume, etc. So I bought multiples of everything. The outcome was more cupboards full of stuff that would in some cases last me for (many) years. If it didn’t go off first.
But on the other hand, I didn’t keep stuff for the sake of it. I didn’t inherit the sentimental attachment gene that Mum was born with. I don’t feel a duty to keep stuff that people have given me except in rare instances. I don’t feel an attachment to stuff I bought just because it was in a certain place, at a certain time, or perhaps with a certain person.
After I got sick my priorities and values changed. Suddenly I started to see just how much ‘stuff’ I had, and it felt like a weight around my neck dragging me down.
As my recovery progressed my aversion to ‘stuff’ accelerated. Over the past year, I’ve already started the process to live with less. I’ve sold (a lot) of stuff. I’ve donated stuff. I’ve thrown out stuff.
There’s also been a change in the kind of stuff that I need as the nature of my daily life and work has changed. I rarely go to a business meeting that’s face to face. Online meetings are no longer a daily occurrence and even on video I’m only seen from the chest up.
My working (and non-work for that matter) wardrobe for many years focused almost exclusively on black. It was easy to match. Quick for packing as I never had to consider if one thing went with another. Practical. Classic. And typical for me – it meant that I didn’t stand out from the crowd. I could fade into the background.
Nowadays I can’t stand black. It reminds me of the darkness, the delusions, and the terrifying hallucinations. It sucks energy from a room and from me. All black from head-to-toe is a thing of the past. It’s too miserable. Too boring. Too morose.
Now I dress in, what is frequently, a riot of color. Clashing or matching – I don’t care as long as it’s bright. I can stretch myself (maybe) to a black pair of shorts or a pair of leggings, but only if they’re teamed with something colorful.
Image caption: one of my rainbow draws of T-shirts. Not a bit of black in sight!
I don’t care what other people think. They’re wasting their energy if they want to use time judging me. I’m too busy having fun wearing a real-life rainbow. Color and comfort have vanquished expectations.
I only buy things that I really need and if they’re not absolutely essential then they must bring me joy. I have no need to spend money to soothe my battered soul any longer.
I know that I could walk out of this house tomorrow with Kim, Evie, a small rucksack of ‘stuff’ that’s special to me and never look back.
GOOD VIBRATIONS
How infectious are you? Don’t worry I’m not talking about you passing on some kind of disease. Since I got sick I’ve become so much more sensitive to the energy that we each radiate. Affecting, or perhaps I should say infecting, all those around us and reflecting back to us like a mirror.
When we were going to Dr Handsome’s wound clinic each week I was treated by the same nurse at every appointment. She always had a smile for me. She exuded calm, kind, competent, professionalism to her patients – I’m sure it wasn’t just me. I felt so safe. I trusted her. It made such a difference, not only to be seen by the same person each time and have that continuity of care, but also to bask in the positive, healing energy that she radiated.
I have friends who radiate infectious positive energy when I’m with them and I know I can do the same thing. But I also know people (not friends) who drain every ounce of energy from a room and from everyone in it.
They radiate negativity – resentment, anxiety, distrust, fear, anger, and uncertainty. I now avoid those people like the plague. Whatever they can offer isn’t worth absorbing all that negative energy.
Some years ago, when I was leading business development for a significant customer account, I was running team meetings to prepare our case to win new work (worth many millions of dollars) with that company.
I remember one of my colleagues walking in – as she entered the room she greeted everyone with a smile and said that she was happy that it was time to get ‘a little bit of Jacqui’. Apparently just being with me could boost her enthusiasm, re-energize, and inspire her. It blew me away. More than a decade later I’ll never forget her saying that.
I want to be positively infectious. Infectiously enthusiastic. Infectiously curious. Infectiously energetic. Infectiously empathetic. And maybe infectiously something else wonderful.
HAPPINESS COMES WHEN YOU TRY THE LEAST
When I look back on my life, before I got sick, I can see that I spent a lot of time looking backwards and living in the past. I’d ruminate about things that had happened, and what I’d said. So maybe I wasn’t so much ‘living’ in the past, but in reality constantly wasting valuable time, energy, and head space gratuitously beating myself up.
I drowned myself in guilt, shame, fear, anxiety, and any other negative emotion I could rustle up. Sinking, without trace, any self-confidence I’d managed to build up. Putting up a fake façade and acting as the imposter in my own life that I believed I was.
Looking forwards can be positive, but I took that too far too. I spent even more time thinking that ‘if’ or ‘when’ X happens then I’ll be happy. Cause and effect. When the next promotion happens then I’ll feel successful. When I’ve earned X amount of money then we’ll be secure. When I get past X meeting or X milestone with a customer then I’ll be able to take a break. I was very rarely, if ever, truly happy.
In between spending all that time in my head thinking about the past and the future there was almost no space left for me to be present and to live in the now.
In Bronnie Ware’s fascinating book Top Five Regrets of the Dying she lays out what she learned spending time with people close to the end of their lives. I wish I’d had the courage to live a life true to myself, not the life others expected of me. I wish I hadn’t worked so hard. I wish I’d had the courage to express my feelings. I wish I’d stayed in touch with my friends. I wish I had let myself be happier.
One that really resonated for me – I wish I hadn’t worked so hard. That’s definitely something I could regret. And yet I can’t regret it as it has put us in the financial position that has given me freedom to leave the corporate drudgery, the opportunity to have my own small business, and the head space to write this book.
The other one that stands out for me – I wish I’d let myself be happier. I just couldn’t. I can’t blame anyone but myself. I could regret that I simply couldn’t give myself permission. There was always something else to chase before I could reach that point. Happiness felt like it was for other people. I drove myself so damn hard. I didn’t have time to be happy. It felt like I was being lazy if I allowed myself even a little breathing space.
Since I got sick, I’ve spent a lot of time during my recovery actively ‘trying’ to be happy. Happy that I was alive. Happy I still had all my limbs. Happy I still had Kim. But as I found out if you try to hang on to happiness too tight then you strangle any possibility of actually being happy.
You can’t force it. It just happens. But it’s about not stopping it. Not avoiding it. Happiness comes when you try the least.
“…nothing pollutes and clogs a mind as thoroughly as guilt…”
Matt Haig, A Life Impossible
In the months after I came out of hospital, I was engulfed by huge waves of guilt. Guilt that I’d put my family through such a horrible experience that would scar them forever. Overwhelming, crushing, paralyzing levels of guilt that swamped my mind. Guilt weighed heavy on my shoulders. It created a fog through which I couldn’t navigate.
It took time to work all that through in the therapy sessions with Violet. I don’t think I could have done it alone. I was too lost.
I’ve accepted that it wasn’t my fault that I got sick. I can also accept that I’m not responsible for other people’s feelings and reactions – it’s up to them how they deal, or not, with what they’ve been through.
I no longer blame myself. I know now that it was a random set of chance events that led to me getting sick. I didn’t get sick because of anything I did. I couldn’t help what happened to me and the impact that had on those around me. It was all outside of my control.
These days I regret (almost) nothing. Most days. And I no longer feel any much guilt. Occasionally something creeps up on me, but I catch it quickly and put it back in its box.
I could regret a lot of things. I could wish things had been different. But in almost every case it would mean that my life would have travelled along a different path that wouldn’t have led to me moving to Denmark and meeting Kim. To where I am. To being the person I am now. I wouldn’t change that for the world.
I can’t change my past, but I can accept all the things that have happened to me. I believe I can find contentment by caring a little less and worrying a lot less.
If today were to be my last I could depart with no regrets, no guilt, no shame. Like everyone I have bad days, but now I know that no feeling lasts forever. Let it be and then let it go.
On the days when I glimpse true happiness it feels like sunshine on my skin and a joyful warmth in my stomach. I love my life and embrace every element of the experience that has brought me to where I am today.
TOMORROW
“The truth is you don’t know what is going to happen tomorrow.
Life is a crazy ride, and nothing is guaranteed.”
Eminem
Like just about everyone else I have a challenge processing the concept of my own mortality. It feels like we’re each immortal and that we’ll live forever. It’s impossible to imagine not being alive.
Yesterday is in the past. Tomorrow could just be a hopeful illusion and might never dawn. There is only today – right now.
My expectation, as I shared earlier, was always I would live to a ripe old age. I based that assumption on solid evidence of the longevity of women in my close family. My grandmothers lived to 91 and 95 years old respectively. Mum is heading for 90. And Aunty Mary is rebelliously energetic (and still auburn haired!) and also in her late 80’s.
But whether we like it or not our time on this earth is finite. Our days are numbered. And we will all die one day – in most cases we just don’t know exactly when.
But how much time do we have left? Check life expectancy data in Denmark and a 55-year-old woman can, on average, expect to live another 30 years to the ripe old age of 85 (1). That’s similar to the UK average of 87 years (2). And a little more than the US average of 80 years for a white female (3).
So maybe, if I’m lucky, I may have another 30 years. It sounds like a long time, but more than half of my life has been and gone. And what really is another 30 years? It’s only 1,560 weeks. That’s 10,920 days. That’s another 30 Christmases, another 30 summers, and the clock is ticking. But what if it’s only five years or ten years or perhaps only months that you have left? Depending on your health and fitness how much will you be able to get out of those years?
I’ve thought a lot – what if my life had ended back in December 2022? Would I have felt satisfied with the life that I’d lived? Had I accomplished everything I wanted? Had I loved life? What would people have remembered about me?
Data on NF patient survival does seem to suggest a shorter life expectancy compared to the wider population (4). But scientific data can only tell us so much. It’s dangerous to see something as fact when it’s a case of probability and not certainty.
That’s true especially when the journey for each NF patient is so unique and there are many other factors such as obesity, diabetes, smoking and heart disease that can complicate the numbers. All you can take from this data is that perhaps there’s a higher likelihood that you won’t make it into the depths of old age. But then again, you might.
I could tell you that I live every day as if it was my last – but I’d be lying. Since I got sick, I better appreciate that my number of tomorrows is not infinite. I recognize that there’s no time to waste. I want to live in the NOW. I’m doing my best to not wish time away – not always successfully!
Sometimes I’ve been aware when I’ve done something for the last time, and had the opportunity to appreciate it. To say a fond farewell or let out a sigh of relief. But frequently I’ve had no idea.
Little things, that you do for the last time, can have a huge impact on your life – something as small as leaving your house. When we left to drive to the ER that night, I didn’t have even an inkling that I might never come home again.
Or what about something bigger like telling someone you love them. I’m sure I told Kim before I went down for that first surgery, but I have no memory of it. And I certainly had no idea that I might never speak to him again if things had gone the other way.
And of course, I had no idea when I slipped into that drug-induced oblivion that it might be the last time that I’d be conscious.
I remember our last ski trip with Dad when he was in his late 70’s. He knew his fitness was waning. His legs looked like they had the strength of some rather over-cooked spaghetti when it came to controlling his skis. Add to that the numerous time that we, and unsuspecting French skiers, had to pick him up after he’d slid to a halt and gently keeled over into the snow.
He used the trip to say goodbye to a sport that he had loved since his early 20’s. We could see just how hard it was for him to say farewell. But he knew in his heart that it was time. And it was wonderful that he got the chance to do that one last trip with Mum, Kim, me, and the kids.
What I didn’t know was that trip would also be the last time I would ski. My back would soon be too painful for me to even entertain the idea of skiing again. And there’s no chance on this earth that I’ll risk skiing with all that beautiful titanium holding my back together these days.
We can never always know when it’s the last time and thinking about it too much may create a whole heap of anxiety.
But I know that perhaps, just perhaps, today might be the last time I’ll experience a certain something in my life.
Image caption: sunrise over one of our favorite parks where we walk Evie in the mornings. The dawn of a new tomorrow.
REFERENCES
Danish Government - Statistics Denmark – Life Expectancy Statistics
UK Government – Office for National Statistics - Life Expectancy Calculator
Long-term outcomes of patients with necrotizing fasciitis – J Burn Care Res 2010 – Timothy D Light et al.
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.
It definitely changes you going through a near death experience, the colours is what fascinates me. I totally understand, I live in black but the other week I bought a lilac, red and pink top for a nice change. So glad you have a really beautiful calming change of life.
Think you would love the Camino experience.
People do it for so many reasons but it is an opportunity to refocus on priorities in life as you concentrate on just taking a step at a time!