The ceiling of the meeting room is low and, although its adequate, I can’t help wishing the lights would be brighter. It’s familiar, this room – not from our cancer journey – but from my corporate life before cancer started. It’s a well-appointed meeting room in a weekend-silent office block. Individual, note-taking desks have been shunted to the back of the space and piled with plates filled with corporate catering. Sexy looking but (I know from experience) uncomfortable chairs have been positioned into loose circles of five chairs apiece.
Josh sits on one of the chairs with karate-suited adults to either side. He’s been invited to attend an hour-long session where these adults will practice what they have learnt in their “Kids Kicking Cancer” training. The training will, apparently, equip them with the ability to help kids with dread diseases cope with the fear and pain of illness and treatment.
Josh smiles and introduces himself. The adults smile back and shake his hand. There’s something a little off with these adults, though. Something that makes me look twice at the group of, undoubtedly, well meaning karate aficionados.
All these adults seem terrified.
They express their fear in one of two ways. The first group’s faces seem paralysed. Rictus masks adorn their immobile features. They almost-but-not-quite bring themselves to make eye contact before focusing back on the grey-patterned carpet tiles.
The second group, have clearly decided they are going to “connect with the kids” to hide their angst. Their voices lilt with the false brightness of TV shows aimed at toddlers. Their eyes sparkle with overemphasised enthusiasm. They “ARE GOING TO SHOW YOU HOW TO OVERCOME THEIR FEAR OF NEEDLES.” They say, in loud, bright voices more suited to toddler party tricks than cancer.
There are four teenage cancer warriors in the room. Of the four, three of them (Josh included) were given close to zero chance of survival. Two of those kids now exhibit “no evidence of disease”. Josh is still in treatment.
These three boys, men actually, have faced their own mortality. They have been up close and personal with death and come out the other side. These survivors know far more about needles than anyone in the room. Their older-than-their-years expressions tell you they can map the length and breadth of their disease. They swap good-natured stories about the best pain meds and the worst treatments. They’ve been cut and stuck and pumped full of poisons that might, just might, kill the beast before the beast kills them. I wonder how many of these “instructors” can say the same?
Indignation rises in my chest. It constricts my throat and brings angry tears to my eyes. How patronising it is that we, as adults, think we could possibility know more about withstanding cancer than these young men?
Who do these people think they are?
And then I look again…
The boys all have the same expression. Encouragement. It’s the same kind of encouraging look I’ve seen of the face of teachers as a kid sounds out a new word. The look that says – I already know this but I’m ready to cheer you on as you get it too. I’ve seen this expression before. In fact I’ve seen this expression wherever I’ve seen kids “dumb-down” their experience of illness to accommodate the well-meaning intrusions of adults.
The session ends and the faces of the instructors relax. They begin chatting amongst themselves. The adults congratulate themselves on their hour spent helping these “brave young people”. How clever and gracious they have been in giving their time to these poor, poor victims? They grin, knowing that these kids can go back into their treatments with a new skill to help them face the fear of needles. Back-slapping commences.
The young men all know different. They’ve just spent an hour teaching “the instructors” how to face fear. They shake hands and tell each other to “keep doing what you’re doing”. They share the shy smiles of an unspoken collusion.
We reach the door to the parking lot and the discomfort of being teenage strangers resumes. These guerrilla teachers go on their way.