RICHARD KINGSLEY THOMAS writes about the challenges – and hope – facing those diagnosed with an incurable disease…
London, UK
A long time ago, my thyroid went nuclear. The often-ignored C cells catapulted multiple tumours into my neck. Finally a lump, like a golf ball, below my ear got my attention. When the surgeon declared it was cancer I could have asked if it was curable. It wasn’t. Then I would have asked if it was terminal but I was too scared. I was trying very hard not to cry. Fifteen years later, living in what feels like an incurable world, my tumours and I have been having some thoughts.
The first one is that the incurable have a stigma. Efforts in our times to remove the stigma around mental health are good and long overdue. We also need to talk about conditions like lung cancer or HIV. In church circles, soon after diagnosis, I realised that I had become healing fodder. In this approach, ‘healing’ means fixed – always. Being neither cured, or dead, can make people feel uncomfortable. Sorry about that. Some respond by quizzing me to understand what my amazing doctors have been studying for decades. Others tell you how well you look, with the unspoken suggestion that you really can’t be that sick. Almost everyone I know who has cancer speaks of friends who have walked right past them on the other side of the road, often literally!
PICTURE: National Cancer Institute/Unsplash
This problem has long been with us. One hospital, next to Wimbledon Common in south-west London, is still known by some locals as the ‘Hospital for the Incurables’. It changed its name in 1995 to reflect its focus on neuro disability. Or was the reason an intolerance for incurable? When it was built, in Victorian times that prejudice was rife. There were 270 London hospitals for the curable but none for people like me. Thankfully, with money from Charles Dickens, advice from Florence Nightingale and gardens designed by Capability Brown things began to change. A century-and-a-half later it seems that changing hearts and minds is much slower and harder. A friend of mine who worked there spoke about how convenient it is that there are certain conditions which we rarely see.
“In church circles, soon after diagnosis, I realised that I had become healing fodder. In this approach, ‘healing’ means fixed – always. Being neither cured, or dead, can make people feel uncomfortable. Sorry about that. Some respond by quizzing me to understand what my amazing doctors have been studying for decades. Others tell you how well you look, with the unspoken suggestion that you really can’t be that sick. Almost everyone I know who has cancer speaks of friends who have walked right past them on the other side of the road, often literally!”
Some Jewish rabbis believe that illness was Jacob’s idea. Before him, they suggest, you were alive and well until you were dead and gone. The shock and effect of losing someone that way is awful. So Jacob changed that for some by getting sick. One chapter of Genesis is devoted to Jacob’s dying words to his sons. Some were great but for others perhaps he should have been sick for a bit longer! We might now say he was ‘putting his affairs in order’. Illness, the rabbis teach, was given to him to provide that opportunity.
That might be fine for those of us given a month, or even a year to prepare for the inevitable – but what about those of us who don’t remember a time when we were well? And I’m not just complaining about my type of illnesses. What about those who have a long deterioration in physical or neurological health? And what about people like our youngest son? The deep scars down the middle of his chest tell of a seriously damaged heart and broken hearts since he was one-day-old.
When I first knew I had cancer I had recently read Michael J Fox’s brilliant memoir detailing his battle with Parkinson’s Desease. He wrote: “If you were to rush into this room right now and announce that you had struck a deal – with God, Allah, Buddha, Christ, Krishna, Bill Gates, whomever – in which the ten years since my diagnosis could be magically taken away, traded in for ten more years as the person I was before – I would, without a moment’s hesitation, tell you to take a hike.”
I didn’t feel that way about my son’s heart when I read it and I don’t feel the same about my cancer now. I hate my disease and the many others carried by my fellow incurables. My thyroid’s well gone but, like a bad tenant with rats below the floorboards, it left behind a tumour in my liver and a few smaller ones elsewhere. The ongoing question is whether it has left anything of value.
An ancient song, the fourth Psalm, got me through radiotherapy 15 years ago. Its words helped me endure being clamped every morning, unable to swallow when they zapped me. One phrase, “Why do you people turn my glory into shame?” speaks to the stigma. It addresses those voices of blame and shame. They make us feel dirty or guilty or lax or worse for being sick or messed up. They can be spoken by good people who love us, clergy or physicians and the worse ones yap on and on inside your head.
This stigmatisation distorts our humanity and hampers our true healing. When it comes from Christians, it erodes the very core of our faith. The apostle Paul suggests this to the churches in Galatia. “God forbid,” he writes “that I should glory, save in the cross of Christ”. One thing he means is that there’s a tangible glory in pain – especially Christ’s, but ours too. Your suffering should not be shamed because it is part of the greater glory of Christ’s pains for us and with us. A few sentences later he alludes to this using the Greek word ‘stigma’ from which we get the same English word. “I carry around the ‘stigma’ of Christ.” So, he says “Let no-one give me trouble” or, in my words, “Shut up”.
Turning back to Jacob, I am actually more inspired by his limp. He got it from a big night out, wrestling with God, whatever that looks like. My dried out voice and stiff neck feel like an upper-body limp. Serious illnesses leave scars, even if they’re hidden. Perhaps Jacob gloried in his hobble. When people patronised him, advised him or wrote him off, perhaps he laughed. Then he would touch his dodgy hip and say, “There’s glory in this hip”. I think there’s glory in our scars and glory in our tears. It’s not that all our sicknesses are wrestling injuries (though it usually feels like it). It’s that our limps and scars and bodily dysfunctions can and do actually frame something sacred. It is at the points of struggle and pain we encounter something holy. Whether we feel the stigma that are the marks of the incurable or the shame and disgrace poured out from others, try to laugh with Jacob and touch the glory. A friend going through radiotherapy told me this week that his wife calls it the ‘glory rays’ – they’ve got the right idea.
You may doubt this – really, it’s fine. Not because I say so but because Jesus welcomes your doubts. My namesake, “Doubting” Thomas, knew it. For him, it wasn’t seeing that was believing. It was touch. Such touch speaks to our present crises. Our world has been starved of meaningful touch but long before this current crisis, society and church have tolerated touch which causes harm while incurables have been treated as untouchables. In such a mess, Thomas knew, even in doubt, that there is glory in touch. Jesus affirms this giving him permission to touch His hands and side. They both knew that the sacred is strongest, not in resurrection power. Then and now, the sacred is in the stigma and the glory in the wounds.
In your world there will be incurables. How can you reduce the stigma and help them feel the glory?
