How to view each passing moment with 20/20 vision

Last week I almost cried.

For the first time in 3 months.

I thought my will was getting stronger – but everything got to me.

You know how that happens sometimes? One seemingly innocuous irritation piled on top of another, until you have a precarious tower of anxiety.

Like the closing moments of a Jenga game. You can step back and admire the tower – miraculously standing, despite the gaps and imbalances. But there is tension in those moments, because you know that one false move will bring it all crashing to the ground.

That was my week.

So what went wrong?

My consultant at the specialist unit in London sent a referral letter to another department, in which he wrote the wrong diagnosis. How could he not even remember what condition I have? His error made me feel like ‘Patient X’, a number on a list, a box to be ticked.

The next day, I found out about a new NHS rule that each patient has a Covid test 72 hours before any appointment. As it was explained to me by a confused secretary at the blood unit, if you visit the hospital every week (as I do), that’s how often you’ll need to have a swab rammed so far up your nose that it tickles your brain.

I mumbled a sarcastic retort to the secretary – half wanting her to hear me, and half knowing that it wasn’t her fault.

To round off the week, the nurse who had brimmed with enthusiasm as each set of donor results came, finally admitted that the consultant wasn’t happy with any of them. “No-one is CMV matched with you, so we’ve requested verification typing from 3 others. The results will take up to six more weeks,” she told me plainly.

We were back to square one. I was crushed.

For the shit to fly, someone needs to turn on the fan

Those three pieces of news sat in my mind like a mound of steaming manure – inert, loaded with potential and waiting for a catalyst.

Then, in the early hours of Saturday morning my kids decided to run riot through the house, shaking me out of deep sleep.

After ten minutes of heated exchange, I went back to bed – incensed with their flagrant lack of compassion, and incredulous that their papa had lain blissfully asleep through the whole event.

My head hit the pillow. My mind whirred with annoyance. I didn’t sleep.

The sun rose. The day started. My body was unrested.

As I stood in the kitchen, staring into the middle distance while the kettle boiled, I felt a heavy lump of desolation throbbing against the insides of my windpipe. My brow furrowed slightly. My lip quivered.

I hadn’t cried since the early days of my illness – and I didn’t want to go back to that place.

Breathe calmly on the fire and it will abate

I skipped breakfast with my family and sought refuge in the park. Fuelled by the energy that only comes with intense anger, I yearned to run. Level-headed enough to powerwalk instead, I let adrenaline drag my exhausted body across the green fields until I came to a clearing.

I lay down in corpse pose and closed my eyes.

Within moments of doing deep yogic breathing, my cares started to melt into the grass. Some time later, I stood on the rim of the circle of rage that I’d felt earlier. I looked inwards at that irate woman – and, in my Zen-like state, I knew that she simply needed to accept the world the way it was.

Of course, that insight was fleeting. Zen carried me on a wave of calm until mid-afternoon. Then the tiredness caught up with me and the internal dialogue began again.

When everything magically falls into place

The next time I spoke with my consultant, he told me that the exaggerated diagnosis in his letter was intended to create urgency, so that my case would be prioritised.

The Covid testing team reassured me that I could have my swabs taken locally, and every fortnight – saving me an envisaged 1-hour weekly roundtrip to the hospital.

In one effortless sentence, sent by email, the nurse switched around my thinking about the on-going donor search. “Because you’re generally keeping well, we have the luxury of waiting for the best possible donor, and not settling for a suboptimal one.”

You know how that happens sometimes? Problems seem so grand in the moment. Then they elegantly resolve themselves, and you wonder what you were so worried about. And you promise yourself that next time you’ll take the bird’s-eye view, see the big picture, behave more like a Zen master.

My life is so full of ups and downs right now – at least I have a multitude of chances to hone my Zen mastery and practice watching every moment with 20/20 clarity.

5 thoughts on “How to view each passing moment with 20/20 vision

  1. Impressed you were able to change your state of mind like that. Also reassuring shift in perspective that people in healthcare are doing the best they can for you behind the scenes

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  2. Jodie you are an amazing and strong lady. Of course you are susceptible to emotions – you would be less than normally human if you weren’t. Hang on in there – the medics have acknowledged that you are staying well enough to be able to wait for not just any old donor but the RIGHT donor. We love you very much and just know that your strength will serve you well, both physically and mentally. xxxxxxx Sh and Ch xxxxxx

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  3. Gosh Jode, what a rollercoaster. We all send you so much love xx I’m convinced you’ll get a match really soon.

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