Literacy, Fluency and the Limits of Language

Jenny Diski, the English author, in her book In Gratitude, relates her response to the news that she had lung cancer. She writes with the voice of an author who has honed her craft over decades. I won’t ruin it for those of you who haven’t read the book, and I recommend you do, but as someone in the business of bad-news-breaking, her words remind us that sometimes, when faced with the unimaginable, we have no words.

We get around the world, and our lives, with words. It is one of the primary tasks of early childhood: to acquire language. We learn to hear, to speak, to read and to write. The language we learn is both general and specific. In my family, our primary languages are English, Afrikaans and isiXhosa. We have combinations of these, some more proficient in some than others, and we have different languages we learnt to speak as mother tongues. These are the languages we think, dream and speak in. And we more or less understand each other. We also have our professional languages, those we acquire to practice our professions. Some of us know what a linear regression is, others can read a balance sheet, and some know where proctalgia fugax hurts.

But how do you learn to speak the language of a life-threatening diagnosis? How do you learn to speak the language of your name and cancer in the same sentence, of ‘progressive disease’, of ‘not a surgical candidate’, or ‘not with curative intent’? What does it mean when someone says something about your condition, but all you hear is ‘there is nothing more we can do for you’. There are two problems here. You need language to tell others how you are feeling, and we need language to navigate the medical landscape we find ourselves in. 

So, to the point of all of this: we are not all speaking the same language. Words in the life-threatening diagnosis universe have meaning, and they don’t mean the same to everyone. If you have found your way to #INSOMNIA, welcome to the muddle. We hope we can work through some of this language together.

– Barbara