On Thursday, I will finally see the oncologist to discuss what, if any, steps can be taken to address the rebellious cells currently busy trying to kill me. The appointment is, quite clearly, for me alone. Like so many others in this situation, since the advent of COVID, I am allowed no-one with me to listen, prompt, remember, or check what I am hearing. On Mary Smith’s advice, I will attempt to record the meeting if I can get permission to do so. Because my life, both in terms of quality and quantity, now literally depends upon what I hear, remember and understand. And there is every possibility that won’t be much.
Masks make hearing difficult for those of us who have to lip read part of the time. Learning how little time you may have, what procedures you may have to undergo (and because of fluid build-up around the heart, there is already a very unpleasant list before we even get to the chemotherapy bit)… it may be sufficiently upsetting to stop you taking things in and processing them. You cannot see the face of those who sit in judgement nor can they see yours.
How can either of you know the other at this stage, without the subtle visual clues and cues from which we as humans read so much? We are not designed to read too much from a flick of an eye… we need micro-expressions, warmth, twitches and connection before real understanding of each other can begin to happen.
A stranger, no matter how kind, can have no idea what manner of person I am, what life I have lived or crises I have faced. Nor have I any idea who they are. They do not know and… being unable to see my face… cannot judge… how much I wish to hear. I do not know, because I cannot see and, needing to lipread a bit too, cannot always hear, what they are saying… and, crucially, how much they are not.
Human beings learn so much about and from each other simply by looking in each other’s faces. We are constantly reading how deep a smile might reach… seeing beyond it to fear or hope… adjusting our responses to their needs
I do not want to be told that I might live several months if they are looking at conditions they honestly believe likely to see me off in a matter of weeks. I want the truth… have told them so… but they will only give as much of the truth as they think I can handle. Masked, alone and unsupported, judged… and possibly condemned… all at that first unfair and uneven encounter.
And I am not happy about that.
At what point did we cede our right to truth to the decision of others? To decide how much of our own story we are capable of handling? By what right do others withhold essential information about how we can live our lives… when it matters to them not at all and to us absolutely?
I had the same battle when my late partner went through cancer, and realised, after a year of surgical hell, that ‘clear’ to the surgeons simply meant ‘hadn’t changed much’… where my partner and I thought, ridiculously, that twenty-seven operations had actually removed or at least shrunk the tumour. I had the same battle with staff when my son was in the coma and ‘stable’ became a contentious word that could mean anything from ‘we almost lost him then’ to ‘he’s actually moving his eyes voluntarily!’.
At some point, we have to remember that we have the right to ask questions… and to hear the answers, whether we like them or not. Orwell’s vision of ‘Big Brother’ is not that of some kindly protector trying its best to shield the fragile child from harsh realities, but a construct designed to reduce the capacity for personal thought and responsibility in humans.
Thinking about the way we are constantly being drip-fed information at rates other people judge sufficient for our needs, and branded with the stigma and ridicule of ‘denier’, ‘conspiracy theorist’ or worse should we question what we are told, my only regret in not being around for too much longer will be that I won’t be here to teach my granddaughters how to question what they are told.
But I taught my sons… perhaps that will be enough.