A Kidney Warrior’s Brave Journey?

Out of all the health-related incidents and circumstances I have experienced in my life, I have chosen exactly none of them.

I’ve had no say over when I became ill, what my diagnosis was, or what I’ve experienced as a result. Admittedly I have chosen some of the ways I’ve responded to what’s happened to me, and I hope that I’ve managed to be mostly positive in the process, but far more importantly, I’m simply very lucky.

Early last week I watched Emily Maitlis, a BBC newsreader, commenting on Boris Johnson’s recovery from coronavirus. She criticised remarks Matt Hancock made the day before that the reason behind Johnson’s good recovery was the fact “he is a fighter”. This instantly struck a chord with me, because language really matters.

If somebody can survive something like coronavirus, which currently has no vaccine or treatment simply through being “a fighter”, what does that say about those who don’t survive? Grandparents, young children, well-known public figures, even NHS staff, all dying simply because they lacked the fortitude to try just that little bit harder to recover? If only they’d made more of an effort, their outcome could have been so different. Really!?

So how does this translate to me? Sitting here in my little shielded bubble I realise that I recognise some of that language. The same very loaded terms have often been applied to me and my experiences.

“You’re so brave! I could never cope with what you have to!” “Well, I don’t have much choice do I!? I’d be dead otherwise!?”

“You’re so inspirational!” “Ok? How, exactly?”

I hate it. It’s trite and frustrating and sometimes just a bit judgemental. I don’t feel any braver than the next person. I’m certainly not a warrior and I wouldn’t describe my experience as having led me on any sort of “journey”. It’s just how my life has turned out, and my “coping toolbox” needs far more than courage, strength of character and gumption. If they were all that was necessary nobody would ever struggle.

In the real world, practical support and sheer good luck go a very long way to influencing how well I can deal with what happens to me. What’s helped me the most is a combination of both those things, plus the realisation that the only choice I have is to do my best. Most days I’m ok but there are still times I desperately wish I wasn’t sick. It would be amazing to go through life making plans without having to factor in “But what if my transplant fails before then? What if I’m too sick?” All the courage in the world doesn’t help on those days.

At heart, I’m still just me; the same self I’ve always been. It’s not like my illness has somehow magically transformed me from normal into extraordinary. It might have forced me to become more confident, stubborn and assertive, but it hasn’t made me superhuman. If somebody looks at me and what I’m lucky enough to be able to do with my life and accredits that solely to courage, what are they then saying about other patients who, for whatever reason, aren’t able to do what I can? Is it really just a matter of pulling their socks up, picking up their sword, and charging into battle against their illness, their victory assured if they just fight hard enough? When you think about it, bravery soon sounds less like a compliment and more like an expectation.