From The Trenches

I’d give my right arm to be worrying about a common cold, the weather, or what time Winner’s closes. That’s what normal people do, and boy oh boy, I want to be normal so bad. I wonder if I focus on those types of things that it may be a way for me to pretend that life is normal. And then maybe I could kid myself into believing that I am not ill and never will be because I am one of the lucky, the fit, the chosen. I would belong to a group of people with a vocabulary for what we are.

Having Stage 4 inflammatory breast cancer (IBC), and really I’m sure, any terminal illness is like watching a turtle head for the beach. It is slow and it is inevitable.

For those who don’t know me well, I am a voracious reader. Words have helped me through this illness almost more than people. I have discovered though that along with death being taboo, so is serious illness. You would think that there would be a lot of literature written about illness, and you would be wrong.

Virginia Woolf wrote an essay On Being Ill where she wonders why illness has been denied a place alongside ‘love and battle and jealousy’ as one of the themes of literature. Woolf declares that as a consequence of this denial, illness has never been given its own vocabulary, leaving people who are ill without a language to express our experiences.

In a quote from that essay ‘let a sufferer try to describe a pain in his head to a doctor and language at once runs dry.’

Woolf states that for the sick to be able to communicate their experiences they ‘would need the courage of a lion tamer,’ since finding words to describe what is going on in our bodies is a daunting task.

I have come to know many people who are terminally ill and it is with heartbreak that I listen to their stories of having to be without receptive and sympathetic friends or family or even the words to explain their dilemmas. How many times have I heard the statement ‘they don’t get it, we don’t speak the same language, I may as well be speaking Greek.’

It can be near impossible for the ill to engage society with our stories of suffering. Where we could find solace, there is none to be had. I am thankful and bow to the generosity of my family for letting me talk things through that are important to me.

In our society, illness is something that happens far away and to other people. It certainly shouldn’t happen in our own living rooms. But it does, every day. Maybe because it is an uncomfortable truth and an uncomfortable reality, we don’t want to talk about it. More importantly, maybe we don’t know how to talk about it.

If we don’t put words out there, we think we can make it all disappear. And better yet, we can make sure it doesn’t ever become our experience because we don’t have the words and we don’t have the language.

I agree with Stephen Jenkinson when he states that North Americans live in a grief illiterate society.

The ill know they are muffled. I also have seen the muzzle that some people try to make sure I wear. I think it is a real misfortune that while we are in the trenches, no one wants to hear about it. They only want to know if we have won the war. If the battle is faltering they quickly want to change the topic to Deal or No Deal.

There are no paths for those of us who are ill. There are no words to tell us what to do; there are few words to inspire us. There are few words for us to hear and there are few words for you to speak. Machado states that ‘Paths are made by walking.’ So walk we do.

But I have the heart of the lion tamer and I am going to speak. I am going to speak old words and new words and crazy words and loving words. I am going to create my own language of the ill.