An Update UPdaTe your status

I'm definitely greyer than I was this time last week. Each new wiry strand of supposed wisdom fighting its way to the surface quicker than the softer and darker version that proceeded it. I'm tired too. Every thought is proceeded by a long, full exhale of breath through my nostrils as though trying to trigger my senses into action. It's as though my brain has slowly ground to a halt under the mounting pile of decisions to be processed from its expanded 'in' tray.

4:44 am. Despite the workload the first thought as my phone light illuminates a darkened room is the pleasing nature of the numbers showing the time. Order. Time is never chaotic but even a highly predictable process has moments that seem to portray extra calm. Time, ceaseless, ordered, predictable. Yet like Salvador Dali’s famous painting, time no longer seems as endless as it first appears.

This was meant to be an update for my psychologist, but what is meant by an update? An update suggests a spontaneous piece of correspondence detailing the milieu of daily life since the last time information was shared. So is this an update or a cry for help? Having typed that I know the reader will pick up on ‘cry for help’ as it appeared like the flashing lights on an ambulance rushing to its destination. So much for subtlety hey?

So what is new? Well, I am still ploughing through a huge pile of books to try and further my insight into human nature. I bought an old rowing machine that I look at daily and admire. I’ve tried taking a wheelchair on the tube and discovered just what it must mean to have a disability. Little change despite huge emotional shifts.

Naturally it’s Stacie’s world that weighs heavily on my mind. She has faced almost 6 months of decreasing health with the grace and strength of someone of unique character, a flower that can’t break regardless of the strength of wind blowing in her direction.

Stacie has gone through the trauma of transplant, lungs quickly failing only to find herself back on the transplant list with odds stacked even worse against her than she originally faced. Now we find, as infection continues to strike at her weaknesses, that her window of opportunity may be closing. A rug could yet be pulled, hope extinguished, life darkened. How to illuminate that and provide a light in that tunnel?

Stacie now takes over 21 different medications every day

Why do I not feel anger? I feel only sadness. I’m fighting but I want to comfort more than lash out. I don’t want to leave her alone in the darkness, or maybe it’s me that needs that comfort as I sense my own fear of death.

No decisions have been made regarding Stacie’s situation as yet but the phrases that keep seeping into my consciousness are ‘best outcomes’ and ‘quality of life’. What does that mean? How are they defined? What is a good outcome when we are all different as individuals? Is there a key performance indicator that must be hit to achieve a ‘quality of life’?

Stacie has a way of cutting through the noise that my brain creates. To her she maintains that as long as she is happy then that’s enough, and she’s right. I remember the broadcasts from the Romanian orphanages and the striking lack of any laughter in a room full of children. Life without laughter and happiness is no life at all.

What keeps Stacie happy? Well, a lot of simple things really. Family, nephews and a niece, the ebb and flow of love and argument that keeps life interesting despite it sometimes feeling stressful. Seeing the joy on peoples faces when she walks into a room, watching a present unwrapped, giving a hug, Harry Potter!

Stacie & Bernice at the OXO

Enjoying time with all her friends

A change from a selfie

Still smiling as always

It’s not just that simple though, to see Stacie like that is to only look at the surface and admire the beautiful cover without thinking the book is worthwhile to really read. It’s looking at that flower in the wind and not understanding the strength that lets it remain in place.

Stacie is a fighter, she has always been a fighter. It’s not without reason that her blog is called ‘Life is worth the fight’. I think people can see the huge smile and think that it’s naivety that see’s her through but that’s massively incorrect. Stacie knows exactly what she faces and is emotionally intelligent enough to know every risk that faces her. She’s scared of it too but she meets every challenge head on and defies the odds stacked against her. She just does it smiling and laughing most of the time.

What people don't see are the times she has to battle through the pain. They see her meet the physical pain but I witness her when she repeats over and over again ‘you can do this!’ She fights off the emotional fear and moves closer to her target. She shows me what it means to be strong.

I’m not a consultant, or a surgeon and I certainly wouldn't want to be. I can take a lifetime deciding if a shirt is worth buying or not, life and death decisions are not for me. It’s a horrible position to have to be in and to think that they are ‘playing God’ is to imagine there is enjoyment to be had in having to decide someones fate. In truth we all want the same thing, we just want the best for the person we love or care for.

I can sense that the audience I meant for this piece is shifting. As always I am looking for advice and a sounding board for my concerns, yet I feel myself almost speaking to the consultants through my words. Maybe my worries and thoughts should be directed elsewhere?

What is the ‘best outcome’ for Stacie? The phrase doesn’t allude to what the possible outcomes are. To myself, Stacie and family the ‘best outcome’ would be having Stacie grow to a happy old age and passing on her spirit to others in person. She would die peacefully in her bed on her 100th birthday having read the message in the card sent by King George.

That’s not going to be the case, but I’m not clear on the statistics being looked at. In Stacie’s world statistics are fairly meaningless given her fearless nature to life. She operates in a binary world where the only outcomes from an operation are that she will either live or die. She accepts that totally and fights for the slimmest chance of survival.

You take that further and any operation, regardless of risk, offers the potential for life. To remove Stacie from the transplant list also removes the potential of life. To Stacie the ‘best outcome’ is the one where life remains a possibility. Light still not extinguished and opportunity for the flower to continue growing.

That brings us onto ‘quality of life’ and of course that just equates to Stacie being happy and able to share the laughter she brings to any conversation. Her quality of life is mixed up in her fighting nature. It’s about showing everyone how you can fight life and its myriad of problems with a smile on your face. Remove the opponent, get rid of the fight and you may just remove the very part of Stacie that keeps her inspiring others. It scares me.

Of course we have to think about the ever expanding nature of the transplant list and making best use of the organs that come available. It does fuck me off that we are still in this situation. Not that there are not enough organs but more that is this the best we can really do? There has to be other answers, anyway that’s for another day.

I’d say we still haven't had our fair share. Adrian died without ever receiving a transplant so I feel Papworth still owe me one. I’m sure Adrian wouldn’t mind Stacie having it, he’d certainly approve of her spirit and I suspect would think her much tougher than myself. Stacie also hasn’t really had a fair crack at transplant either. If we are talking ‘best outcomes’ was the decision right to give Stacie a transplant in the first place? Maybe consultants are sometimes wrong. If ever two wrongs could make a right then this is it. It may be wrong to place Stacie back on the list but it could work out the best decision ever made.

So much for an update, it’s become my rallying call for Stacie’s life. I imagine you’d want to know how I am actually coping. I’m worried, scared, tired and muddled, but I’m still avoiding slipping into any coping strategies I had previously. I’m focused very much on Stacie but also aware I need to take care of my own health too.

I’m going to stare at that rowing machine again. I might use it this time, maybe not.

Created By
Mark Watson

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