It’s fair to say that the last few weeks and months have been an uncertain time for me. Giving up a well-paid job, striking out on my own without any guarantee of income or success, trusting just my self-belief and abilities will get me through.
It started as a deeply fearful period. The initial levity of being able to work in my PJ’s if I so desired soon dwindled back into the freelance reality of no work, no money.
Yet even as I faced this most uncertain of times, I started to see and appreciate the world around me again. Over the last few weeks I’ve been reading a lot more and helping to shape and form my ideas about how I go forward from here.
I’ve already written about how reading people’s bucket lists has inspired my own, but it was another book entirely that helped me reach a key realisation in my life and pin down the biggest mistake I’d made.
It’s all a matter of perspective, really.
The Great Transplant Frame
Although this realisation – and the mistake itself – is something of which we are all guilty, it was only through the frame of my transplant, and the struggle to adjust that I and my friends have gone through1, that I finally pinned it down.
Many people post-transplant struggle to adapt to their new life. I’ve spoken before about my friends Tor and Tori, who have been fighting through their own adaptation issues of late.
People on the transplant list have to deal with a life of incredible uncertainty. Every day things get a little worse, almost imperceptibly, as their condition deteriorates, their energy seeps away, their life’s light splutters before them.
We tell ourselves everything will be OK, that the call will come, that this will happen. Some of us have to endure numerous false alarms, false starts to our new lives, with all the angst and heartbreak that involves.
And then one day, the miracle happens. The call comes.
All of a sudden our lives are thrown into complete reverse – far from slowly degrading, we’re suddenly progressing positively. We get up out of bed, take our first few tentative steps, smile and grimace as we push ourselves to get mobile, to join the big wide world again, feel freedom for the first time in years.
That’s when it hits us: we are “normal”.
We’re now starting to stop looking sick. We don’t cart an oxygen tank around with us any more. We don’t dissolve into coughing fits at the slightest exertion. We can do “normal” things.
Yes, we still have a lot of strength to gain and a lot of pills to take, but to all intents and purposes, from the view of the outside world, we’re just regular people.
Which is incredibly hard.
Reaching For Acceptance
I’ve long understood this process and recognised it in myself. From living a life when all I wanted was a chance to be normal, I can now think of nothing worse than being ‘normal’.
“What is normal anyway?” people always ping back, full of good intentions. I understand their sentiment (I do!), but we all know that there are ideas of the norm that pervade our society and culture; if they didn’t, why do we look askance at people who veer off from the ‘normal standards’ we expect?
For me, it’s about being a different sort of abnormal. I don’t want to be the sick guy any more, the one who is admired or pitied2 for fighting a genetic illness that I could do nothing about.
I want to be exceptional. I feel a pressure to succeed at everything, to be the very best human being that anyone has ever been.
Which, when you stop and look at it, is completely ridiculous. The best I can strive for is to be the very best version of me.
Defining ‘Me’
Therein, as they say, lies the problem. To be the very best version of yourself, you have know yourself. When your life had changed beyond measure, it’s hard not to see that change in yourself.
Who am I now? I don’t have all my original component parts; part of me isn’t me any more. Does that mean I’m still me?
Of course, to anyone on the outside, the answer is as clear as the brightest of days. But for many people post-transplant, those skies get clouded with doubts, with uncertainty and fear of what this all means.
Writing Your Story
Many of my internal analogies come back to the ‘story’ of my life and it’s in the writing of that story that I made the biggest mistake of my life.
Transplant is one of the few times in the world that we are given a second chance. Most people’s lives progress in a nice, linear fashion. They are born, they grow old, they die.
For transplantees, we are born, we don’t grow as old, we face death. We stare right back at him, kick him in the nuts and start growing old all over again.
I know you’re hanging on for this now, so here it is, plain and simple:
My biggest mistake was in seeing my transplant as the end of one story and the start of another.
“New life”, the term that so many people – including recipients – use to describe transplant, implies a fresh start. It implies that our story is starting over and we have to tell a new narrative with new characters and a new outlook.
It’s no wonder we struggle to find our way if we’re trying to reinvent an entire world and populate it with new people, including a new protagonist.
A Personal Sequel
My moment of realisation came this week whilst reading Joel Runyon‘s amazing Impossible Manifesto. Despite my feelings towards “impossible”, Joel’s blog is one that consistently inspires and motivates me to be better, to push myself harder and to believe that anything is possible.
In his Manifesto – one of the best calls to action you’ll read on the web – he talks of writing your own story and, more than that, embracing the ability to control the story you’re writing. You are both the author and the protagonist, which means you get to choose what happens.
Key to any great story, Joel says, is conflict.
…conflict happens, especially when you’re going after the Impossible. Otherwise, it would be easy.
But conflict is also where a story starts to get good. A story without conflict is boring. There’s no drama. No suspense. No change.
Joel Runyon, Impossible Manifesto
It was in this moment, reading about the necessity for conflict, how it affects a story and how it makes a story compelling that I hit my big moment of realisation. Not just for me, not just for transplantees, but for all of us in our everyday lives.
We have to realise that transplant is the cliffhanger at the end of Volume 1 of our story, not the resolution to a single story.
Only by seeing our lives as a continuing saga, complete with challenges, conflict and the overcoming of great obstacles, will we all finally be able to accept those huge moments in our lives where things turn around.
It’s not a new story, it’s a new episode in an old and familiar tale. And where that tale goes is entirely up to you.
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PS – I’m working on my own eBook/manifesto called Relaunch Your Life, a collection of thoughts and ideas for getting off your butt and kicking your new life into gear. If you want to be the first to hear about how we can all start the next volume in our stories, sign up to get exclusive updates and other personal content right here.