This post is dedicated to Zoe Bartlett, who died on 21.7.2016 before she took her first breath. We will always love her.
In the beginning
For the majority of my life, the proverbial waters were still and calm.
In the endless spring of early adulthood, one inexplicably contrives to generate a thunderstorm capable of unsettling tranquil waters, but unless possessed of a unique brand of recklessness, attempts are usually futile.
Trying to create waves in the ‘ocean of life’ could be compared to a small child splashing in a paddling pool.
Getting splashed can very annoying, but in no way dangerous. And besides, as soon as the child’s arms tire out, the waters revert to an absolute tranquility.
Now, even if you are feeling particularly irked by the relentless delivery of hideously over chlorinated H2o into your nasal passage AND your mini tormentor happens to be possessed of subhuman stamina levels (quite feasible) it remains possible to exact a level of control over this distinct type of watery disruption.
A few carefully selected words to the child’s parents, suggesting little Johnny wrecking everybody’s fun in the pool MIGHT be more important than their oversized glass of chianti and Jackie Collins novel, usually does the trick.
So it shouldn’t come as a surprise that true turbulence is not so easy to generate from within and is not so simple to stop as a toddler who had too many refill trips to the coca cola tap at lunchtime.
When real storms arrive, full of blood and thunder, the waves they perpetuate are totally merciless, unquestionably frightening and intimidatingly unstoppable.
They are always unannounced.
In moments such as these one realizes that a rackety old rowing boat and a wooden paddle are not much use in the middle of the Atlantic.
The Gods of Olympus
Two lovely sons, a wife I adore and a life committed to my passion, exercise. I was feeling blessed. Not that it had been entirely plain sailing.
I’d successfully navigated relentless self-doubt, innumerable bouts of soul searching and countless poorly chosen paths, but all in all, nothing your typical mid-thirties humanoid doesn’t experience.
It was all self-generated turbulence (see above) and I’d emerged largely unscathed.
Perhaps the gods decided they’d been smiling on me a little too brightly of late.
In my bleaker moments, I’ve imagined them conspiring together on Mount Olympus.
“That cocky so and so in West London needs a bloody good lesson in gratitude.”
Said Neptune, the God of Water, to Zeus, the God of all things.
“I’m not sure I like the way he’s galloping around all full of ‘happiness’. I liked him better when he was full of unwarranted melancholy.
Quite frankly, it’s really starting to P me off.”
“Me too.” Replied Zeus.
“Let the bugger have it. Make his waters as stormy as you like Neptune.”
And that, as they say, was that.
The first labor I faced was relatively small. In fact, it was tiny.
A teeny, tiny dark mole that would have gone unnoticed were it not for a lunch date with my father.
“I’d get that mole on your pin peg checked out Son.”
Suggested my Dad, in his inimitable London Brogue.
A quick mental thumb through the cockney rhyming slang (a cryptic language used by working class Londoners to confuse police in the early 20th century) dictionary precipitated a glance down at my leg.
I did. It was a Melanoma.
It was news to me that seemingly inconspicuous moles on your pin pegs (legs), or your chalk farms (arms), or even on your boat race (face), can kill you.
My melanoma was caught early…
…but multiple hospital scans, anxious waits for lymph node biopsies and late night ‘worst case scenario’ google searches, change a person.
Head on confrontation with ones own mortality flips a switch inside.
Anybody who has felt the heat radiating intensely from the ovens in the kitchen of uncertainty that is Cancer knows this to be true.
This switch brings with it vulnerability, caution and fear, and like the Wild West bandit who glances down to see the bullet intended for his heart, stopped in its tracks by a solid silver cigarette holder in his shirt pocket and converts to the priesthood overnight, the person you were is left behind forever.
Perhaps it is because I was given the all clear and my diagnosis so favorable, (my experience may not be shared by those with less fortuitous prognosis) but as the fog that had so blurred my vision since diagnosis gradually dissipated, my eyes were introduced to a new clarity of vision and perspective.
In my case, I’m more than a little embarrassed that my newfound panorama was cheesier than a visit to a Dutch Edam factory. Cheerily consuming a triple cheese toasty whilst enjoying the company of a family of cheese loving, talking mice discussing the contrasting benefits of Roquefort and Stilton. (Roquefort, creamy and robust, Stilton, crumbly and sharp).
So overall, you’d have to say it was fairly cheesy.
Yes. A new perspective on love…
WAIT…wait, don’t leave, before you get back to the procrastinators hobby of mindlessly scrolling your Facebook feed, or worse, get on with something infinitely less important, like work, hear me out.
I speak not of the ‘Hearts and roses and splitting your Wrigley’s gum stick in half and sharing it with the inexplicably semi-naked woman sat next to you on the bus’ love.
The last thing on your mind when you’re having a profound moment such as this is ‘romantic’ love.
Nor am I referring to a ‘feeling’ of love. Emotions are only useful to those who experience them.
Pre-diagnosis, whilst scoring consistently highly in the ‘feeling’ love category, (giving me the undeserved satisfaction of thinking I was a loving person), I was consistently notching up ‘nil-pwa’ in the ‘Doing’ love discipline.
Rendering it pretty much worthless.
‘Doing’ love can be tangibly defined through sharing what you know selflessly, DOING what you can willingly and offering genuine kindness, time and understanding to other people.
In my experience, this is about the only thing that holds up against the brevity of ones own existence.
Somebody probably needs to tell those that work in the financial services industry, but it is impossible to ‘do’ love with an inanimate object. (Yes, I know there are many, MANY jokes that I could neatly insert here but this blog is certified PG.)
We spend so much of our lives in the pursuit of things we hope will make us happier, but ultimately, investment in people offers a much higher ‘happiness dividend’ than an impressive fiscal bottom line ever could.
Ever since the diagnosis, the only investments I make are in people. This change has been the greatest blessing of my life.
However, in the wake of such a dramatic paradigm shift, my readiness to remain aboard my shiny new “Love boat” was about to be tested.
Pride and privilege
We are a largely privileged bunch in the 21st century Western world and I’m deeply cautious that the thunderstorms in our lives are relative.
Some may consider an early stage cancer diagnosis to be relatively mild turbulence, some a hurricane of unimaginable magnitude.
For me, it was profound in terms of shifting perspective, but not nearly as emotionally challenging as the next trial the gods had in store.
As I write these words, the story takes us into ‘real time’ and the looming clouds that cast shadows over the people I love most hover ominously in the sky above.
Two of a kind
When we found out we were having twins we fell off our chairs.
When we found out they were girls we cried. I had been secretly hoping for them to be so.
When we discovered one of our daughters had downs syndrome, the doctor waited in vein for another reaction.
All he got was a smile. For us, nothing had changed.
Actually, that’s a bit of a lie, her position as underdog actually made me love her more.
I’ve always had a soft spot for people who don’t fit the mold. I gravitate towards those that bring a variety of flavors and spices to the party, the people that standout from the crowd, the brave few that fly in the face of convention. Whilst I would seldom speak for Alex in my blog or anywhere else, I will say she shares this particular view.
She truly was OUR daughter.
Perhaps it’s because I myself have always been the square peg that could never find a hole to fit in*.
(*For those who can relate, this type of personality can make childhood particularly difficult to navigate but adulthood smugly pleasing. If any young people reading share this disposition. Don’t change. Ever.)
If old Zeus and Neptune felt that a child with Down’s syndrome was any type of a problem to us they were well wide of the mark, she was a blessing in every way.
I like to think they aren’t cruel enough to consider this a green light for what was to come, but lets face it, they’ve got previous.
First came the detection of a heart condition.
“We can fix it”.
The doctors said.
“Ok. That’s good then.”
After that, a rare stomach complication was uncovered.
“The complexity is increasing but we think can still fix it.”
“OK. That’s good then.”
Complications kept arising, the storm kept brewing, but our family continued to march bravely on.
At 32 weeks gestation, we updated our friends with a celebratory message. We had passed a milestone the medical profession had thought we wouldn’t reach.
Recklessly in hindsight, we could only see a positive outcome.
Our two little girls would both be with us soon…
Stick or twist
Blackjack is a card game between a player and dealer. The game is to beat the dealer in one of the following ways:
- Get 21 points on the first two cards
- Reach a final score higher than the dealer without exceeding 21; or
- Let the dealer draw additional cards until his or her hand exceeds 21.
After every card is laid down the dealer will ask you whether you wish to ‘stick or twist’.
If you have 13, the decision is easy. You twist as 13 is rarely a winning hand.
If you have, say 20, it is easy to choose stick. The dealer is unlikely to beat 20 and there is only one card in the pack that could help you. Twisting would probably bust.
The hardest decisions in blackjack are 16 and 17. One decision is not clearly better than the other.
You may stick and find the dealer hits 18, or you may twist, hit a 10 and bust.
When the doctor told us that our little girl was struggling in the womb we asked what that meant.
“There has been a significant change in blood flow to the organs. Under normal circumstances we would get them both out immediately…”
These weren’t normal circumstances. She continued.
“…but if we take her out now the risks are very large.”
‘Risk’ is doctor speak for your daughter may die. We both knew that.
“OK. So what are we going to do?”
The doctor carefully placed the next card on the table.
“There is no right answer…we can offer our opinion, but the complexities are too many to understand which route is better at this stage.
You and your wife will have to decide.”
If we were playing blackjack we’d just hit a 16.
Stick or twist.
There is no way of preparing yourself for a decision like this.
The feeling of holding your daughters life in your hands whilst simultaneously feeling almost entirely helpless is not an enviable one.
Alex instinct told her proceeding with the pregnancy was the right thing to do.
Intuition has more wisdom than logic in such moments.
This WAS the right decision, regardless of the outcome.
We both believe that.
A bridge over troubled water
Life usually imitates art so when Simon and Garfunkel sang about the “Bridge over troubled water” being a person. I assumed it was true.
My experience has been markedly different.
When faced with the toughest moments in life you desperately search for the people you love most to be your bridge.
They can’t be.
For the people who care the most have jumped headfirst into the troubled waters with you, absent of fear and without hesitation. It is, of course, impossible to be submerged in water and a bridge at the same time.
When a brutal wave hits and you are struggling for breath, consumed by the relentless crashing of angered, salty water, the greatest comfort one can have is reaching out, and finding a warm hand to hold.
They say we experience four stages of life before the process of winding down commences.
The Birth. We start.
The Growth. We Learn. We improve. We grow.
The Discovery. Growth gives way to discovery. Playing with our talents and our abilities. Discovering what is possible and what is not.
The Realization. With a greater comprehension of what we can do, we put it to use.
I’ve worked in exercise for twenty years, but I only ‘realized’ what exercise is for in the last few months. The ‘journey of exercise’ echoes the ‘journey of life’ in such harmony that it seems almost poetic.
The Birth: You find exercise.
The Growth: You train for vanity, to lose weight, to be leaner, to be faster, to be stronger.
The Discovery: Exercise stops being about results but rather about how can it make you feel and what you can achieve in life with it as a bedfellow.
You exercise because you want to, because without it life is that much poorer.
I thought this was the realization phase. I thought that exercising for pleasure and for progress with life in general was the pinnacle of the journey.
I was wrong.
The Realization: In the toughest moments, when there have been no answers. Exercise has been my bridge over increasingly troubled water.
The proverbial bricks I’ve spent a lifetime laying and the bricks that continue to be laid every day, provided a sure footing, albeit temporarily, on which to take respite from the brutal waves of the ocean.
Without exercise, I fear I may have sunk.
The Moral of the story
Our situation has not been particularly remarkable, and struggles are every bit as relative as luxury.
Above all, we feel fortunate, positive and happy. Sympathy is not within our agenda. We are remarkably blessed in our lives, regardless of what the future may hold.
Many people will suffer greater difficulties than we ever will, and we may have many more challenging decisions and trials around the corner and up the road.
The great equalizer is the realization that mind, body and spirit are intrinsically linked.
When the mind and the spirit are stretched to the limit, a healthy body can become the bridge that provides a sure footing, the shelter from the storm and the boat that offers rescue.
I find little to no irony in recalling that in order to build a strong body, only mind and spirit could carry me through when the physical body was flailing.
So. The takeaway is simple.
The Ford dealer suggests driving a Mustang for speed and comfort on journeys.
The dairy farmer recommends drinking milk for healthy gums and bones.
The shepherd exhorts the benefits of wearing wool to stay warm this winter.
And the exercise coach recommends exercise for everything else. (Sorry Mastercard.)
Look after your body. Don’t worry if you aren’t already doing it. Start today. The payback is immediate.
And one day it will look after you.
P.S Her name is Zoe, which means ‘life’ in Greek.
Much love to everybody who supports us with kind messages, thoughts and prayers. x